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Author Topic: 21-day stay at a Dual Diagnosis Center - progress  (Read 18278 times)
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« on: May 31, 2013, 03:05:12 PM »

Hi... . I've actually never posted a topic on any Board, except for my Introduction story on the New Members Board. If anyone is interested in why I came here in the first place in April 2013, here is my Introduction: This Board is saving my son's recovery  But, in a nutshell, my adult son's recent diagnosis of BPD in April after a 21-day stay at a Dual Diagnosis Center, and the Center's discharge paperwork giving me this website's address, started me on our journey to his recovery. And, for the record, he is still doing very well  Smiling (click to insert in post)

In fact, his very recovery process in going so well is what brought me to this morning, and a new revelation for me. My son (36 years old) has been getting Neurofeedback T sessions since April 18th on a very intensive basis. At this point he goes at least 4 times per week, sometimes 5; the intensity is because he not only is dealing with Low Functioning BPD, but has been diagnosed (15 years ago) with ADD, Clinical Depression, Social Anxiety, Hyperactive Thyroid, with resulting Suicidal Ideation and Substance Abuse that have been under control now since the end of February. His NF T has a lot to work with here (hahahaha!) and is doing a wonderful job. My son really likes her a lot, and loves the T. He is making changes and progress by leaps and bounds, and is sober and non-suicidal and feeling better every day.  Smiling (click to insert in post)

So much so, that I now forget almost all the time that he is still in recovery, and is not thinking "normally" like you or me. Our conversations (which sometimes include my H, his Dad, when he's home from work) are so lively and fun and enlightening, his intelligence finally shining through again after his long, 17-year long descending into his skewed-cognizant abyss, that I tend to talk to him with the playful banter that I use with all of my closest relatives and friends. Even though the Validation and S.E.T. and DEARMAN communication techniques I learned here since signing on were the reasons that we changed our relationship for the better, enabling him to be freed up enough mentally to agree to all his recovery Ts, I don't actually use them 100% of the time (forgetting he's still "thinking crazy" sometimes, as he tells me).

This morning, he had to go mow the lawn (he hates doing it, but was resigned to do it because he knew he had to). I was good... . woke him up with a suggestion ("You might want to do it sooner rather than later, since it's going to be so hot outside later on in the day", and he got himself up and came downstairs resignedly--not happily--but did make it out of bed and downstairs (this is new for him; in the past he would procrastinate doing an undesirable task to the point of maybe accomplishing it before he had to go to bed at night. No joke.)

This was good, and typical of his new (better!) behavior since starting NFT. I was impressed, relieved and happy. When he went to get some breakfast, he ended up grabbing at least 3 fruit danishes from the freezer to pop into the microwave, and I reacted by saying (as non-judgmentally as possible): "Try not to have TOO many; you know that too much sugar isn't a good thing... . " The look on his face was so irritated, so despondent, so depressed, that I realized immediately I'd said something wrong, but couldn't figure out why. Then I realized that this was "the look" that I haven't seen since April, "the look" that says: "You hurt my feelings. I can't do anything right. I'm always disappointing you. I suck... . I wish I didn't do stuff like this... . "

After he went outside and mowed the lawn (more of it than he'd been asked to by my H, doing a wonderful job of it without complaining or recklessly wheeling around with the riding mower), I figured out my mistake. I'd somehow invalidated and criticized him by trying to give healthy, motherly advice. And, in the scheme of things, I should have just let him be, because what he was doing RIGHT was more important than a few danishes when he should've been having something healthier. Luckily for me, when he finished the lawn about 75 minutes later, he came into the house with a smile and I could praise him for a job well done and validate for him "Yes, it sure IS hot out there and you DESERVE a long shower to cool off... . "

And just for the record, in the "old days" before this recovery process, he would've come back in the house with the most SOUR look on his face, dragging up the stairs noisily and slamming the bathroom door on his way into the shower. No wonder I keep forgetting that he isn't fully recovered yet Smiling (click to insert in post)




Here's more: Good News, Breakthroughs & TLCs (and it's not just about my son  Smiling (click to insert in post) )

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« Reply #1 on: June 01, 2013, 03:48:28 PM »

We are fairly new to this BPD game but I understand the emotions you are describing!  It is great to hear though that you son is doing so much better!  I will pray that the progress continues!  And as a parent, it is so hard to always remember to say and do exactly the right thing.  You are not alone!
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« Reply #2 on: June 01, 2013, 09:47:16 PM »

We are fairly new to this BPD game but I understand the emotions you are describing!  It is great to hear though that you son is doing so much better!  I will pray that the progress continues!  And as a parent, it is so hard to always remember to say and do exactly the right thing.  You are not alone!

Thanks for the kind words, BioAdoptMom3   You are so right; as a parent I find that I sometimes forget to be "mindful" and just blurt out whatever I think is right or funny or whatever  Smiling (click to insert in post)  But, I have to say that the techniques I've learned from this site, and from all of the many Posters here, have been invaluable and life-saving for my family. Good luck to you with your DD 
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« Reply #3 on: June 03, 2013, 08:17:10 PM »

RR what a wonderful story   I am sitting here in a sort of 'disbelief' it sounds so good... . and now I am feeling a tad teary too. Your story is such a blessing. It is so hopeful that at 36 things can be turned around with what seems like a short time frame. Of course it is a work in progress, but to see progress must be so wonderful. Yes, I admit it, I am a little jealous   but really I am so happy for you.

If you gave us your insight into how things have worked for you from time to time on the boards here, that would be so helpful and uplifting for us. You know how hard it is when our kids don't have treatment and don't want to accept treatment? Well your success with the tools you learnt here can help us too.

Me, my dd is diagnosed as PTSD, due I think to her claim of a lifetime of abuse by me, according to her T. So, of course while she is in treatment, it is not optimal... .

thanks,

Vivek

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« Reply #4 on: June 03, 2013, 09:16:43 PM »

Hi, Vivek     And thanks for your thoughts... . If I was not living this recovery in my own house, I would not believe it, either  Smiling (click to insert in post) If anyone reads my first Post on the Newbie Board, they would see the life my son had been living prior to his suicide ideation (the last of many in the last 17 years) that landed him in the Dual Diagnosis Center in March of this year. And they would see the horror I'd been living, and the tension that was starting right after he got home, before I logged onto this site and learned how to not "push his buttons" that led to the tension. Honest to God~~This site and then the subsequent Neurofeedback Therapy truly made the difference this time, which was the third time he was discharged from a rehab program. Of course, the fact that this 3rd program addressed his mental health issues (finally!) also made the difference... .

Somehow, finding out about the BPD diagnosis set off some change of understanding or attitude for my son, and he spent the 21 days in the Center reading the library of psychological information they had there, and he was just so ready to "get better" after he got out, that when he was offered the NFT, he jumped at it. It's not for everybody, I know. Insurance doesn't cover it, so it can really run into some money for someone who doesn't have any extra to work with (we had an unexpected Federal Refund this year, and are spending that). If the patient isn't interested in doing it, or doesn't think he/she has a problem that needs to be solved, then it will take longer. And, my son isn't working right now (and I just recently retired), so getting him to his many appointments is not a hardship (his car was totaled in February, which led to a series of subsequent bad decisions on his part while we were on a 2 week vacation in FL, which then led to his last suicide contemplation. Which means I am taking him to the appointments). And, geographically this is a piece of cake: his NF T is only 15 minutes from home  Smiling (click to insert in post)

And, I DO have an update... . After his last NFT appointment on Saturday (his next one is tomorrow, Tuesday), we chatted in the car on the way home. Up to that time, any time someone asked him if he thought NFT was helping him, he'd say he wasn't sure; that he liked it, and felt great after having each session, but he wasn't sure how much it was helping him. Of course, his Dad and I (and everyone who knows him!) can visibly see that he's a new guy, and his behaviors at home and everywhere else (his Outpatient Therapist can see it, and his Psychiatrist can see it) show that he's a new guy, but he wasn't seeing it himself so much  

Anyhow, in the car on the way home from his session on Saturday he told me that he's realizing now that the NFT is making his brain work "better." That he's "thinking clearer" and "understanding things better" and he's not "reacting emotionally so much anymore, but taking the time to check" his "feelings to see if they are correct in a situation or not." He's realizing that "just because something seems like it's the end of the world right at the time" he's realizing that if he gives it "more time, eventually it turns out OK, and there's no reason to get angry or upset or pissy... . "  Yes, yes, yes, yes! THAT'S what we are all seeing, and what is making living with him in our house so much better!  Smiling (click to insert in post)  And, hopefully, with continued T, he will be happier, less inclined to self-medicate again, and able to get a job and live a full and happy life... .  

Do I expect that to happen? Not exactly, but at least I can hope for it now. I go to every NFT session with him, and give feedback to the T so she not only hears what my son tells her, but knows what I know, too. She's intuitive, sensitive, passionate and dedicated to what she does, and to my son in particular. They have similar, artistic, personalities, and she understands him and his problems. And she so much wants him to "get better" because she knows he wants to, and because she knows our little family is willing to go the distance with this. We're all serious about this, which is why his NFT is so intensive and serious. It's the difference between life and death to him, and we are all honoring that  

Me, my dd is diagnosed as PTSD, due I think to her claim of a lifetime of abuse by me, according to her T. So, of course while she is in treatment, it is not optimal... .

thanks,

Vivek

And this breaks my heart  :'(  I don't for one minute believe that her claims are true, but I guess they are "true for her" for whatever reason    I read your posts about that, and it just makes me so sad for you, and please know that my wish is that somehow she sees the light and things get better  
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« Reply #5 on: June 03, 2013, 09:24:36 PM »

Rapt Reader,

What a hopeful and encouraging post! Thank you so much for the shout-out on Neuro-feedback therapy. I have been looking into that alot lately but have found very little evidence that supports significant changes for those suffering with BPD. Your story adds a sliver of hope for those on this board. (You know how we'll try almost anything) Smiling (click to insert in post)

Congratulations to you and your family for seeing a breakthrough!

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« Reply #6 on: June 03, 2013, 09:43:18 PM »

Thanks, Juliecelle   Smiling (click to insert in post)  I appreciate your kind words   

I actually talked to the NF T about that on Saturday... . I'd given her the link to this website so she could learn about BPD, since my son is her first patient diagnosed with that. She really loves this site  Smiling (click to insert in post)  She's worked with people with ADHD, Autism, Depression, Anxiety, Substance Abuse & Suicidal Ideation, and all sorts of physical disabilities, but never BPD. She did her own research as to the best way to proceed, and she said that she is working on "symptoms and behaviors instead of diagnoses." And, true to form, my son's symptoms and behaviors are being addressed specifically by the T and one by one we are all seeing changes.  Smiling (click to insert in post)

And, the reason for the intensity of the sessions (4-5 days/week, sometimes more than one session per day) is because of his past addiction problems, and his past suicidal ideations. She is specifically working on these tirelessly and predominately, while also working on everything else. First and foremost, he needs to not go back to self-medicating, and not want to give up on life. And I have to tell you, it really seems to be working  Smiling (click to insert in post)
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« Reply #7 on: June 03, 2013, 11:59:51 PM »

So good to hear from you again   - so happy your ds can see and feel the improvement   I hope this continues to build on the work already done, compounds the effort and so on... .  

Now, to take you on another tack, I just finished reading Buddha and the Borderline, see:

Buddha and the Borderline

It is the story of the recovery of an young woman from BPD, a memoir and a great read. She didn't do neurofeedback, but her life was a story of treatments and no permanent relief from her BPD until she found Buddhism. Now it's not that she became religious or anything, it was just that what she did was not enough of itself, she needed that extra impetus to find a way to connect with the universe and practice mindfulness.

So, I am thinking that the neurofeedback, working so wonderfully, your ds may benefit from a complementary psychotherapy. Perhaps you could speak with the neurologist about it? Now, to help you and the neurologist understand the different psychotherapies, you might want to have a look at this link on National Clinical Guidelines for the Management of BPD (Aust) published just last month. It compares the therapies and their success rate based on the latest research (you will see neurofeedback doesn't rate a mention because there is limited research on its use with BPD). The book can be downloaded free, see page 55:

National Clinical Guidelines for the Management of BPD (Aust)

I don't want you to go into a flat panic now   and get all unnecessarily worried  . It's just a thought. And since your ds is working so well with neurofeedback, it may be appropriate for her to consider this with him - at some stage.

Cheers,

Viv   
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« Reply #8 on: June 04, 2013, 08:39:07 AM »

Raptreader,

Wow!  Your post is so encouraging!  I haven't read your intro, yet.  I will go back and read that.  I am going to check out if they have any neruofeedback around here.  My, soon to be 29, has diagnosed ADD; and/or borderline.  I highly suspect BPD, and a former T of mine, saw here once, and confirmed those were her feelings, too.  My dd has been struggling with addiction.  She was on methadone, then detoxed in jail, and decided not to return to clinic once she was released.  I was so proud of her for getting off of it.  Methadone has quite a long half life which makes withdrawal all the longer.  She had extreme fatigue and started taking opiates here and there for energy.  I warned her that full blown addiction was around the corner.  I feel that she may have some underlying medical problem that causes extreme fatigue.  I have an auto-immune illness, so I know what extreme fatigue is. She did test positive on one test, but primary dr. said that her titers were low enough that she was not concerned.  I said that is how mine started out.  It was a very slow progressing disease.  However, pcp said that she would refer her to rheumatologist, but my dd did not want to get into it any further.  She just chose to self medicate.  Anyways, she is back at the methadone clinic. 

We have a university hospital that probably does neurofeedback.  It is a 90 minute drive, but if it is not everyday, then that would be very doable for us. 

I really appreciated your post.  It is easy at times to forget about the validating.  But, we can always go back and get a do over.  I have done that numerous times when I realized that I was invalidating.  She appreciates the apology and recognition of her feelings. 

peaceplease
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« Reply #9 on: June 04, 2013, 06:09:20 PM »

Thanks for the links, Vivek     I read the reviews for the "Buddha and the Borderline" book and it looks like it would not only be helpful for my son to read, but myself also... . I ordered Rachel Reiland's "Get me Out of Here" and he read it in one night (!) and LOVED it! Turns out, his last girlfriend (they broke up more than a year ago) "could have written that book herself" according to my son, and it helped him understand the r/s they had (he, a LF BPD and she, a possible HF BPD/NPD as far as he is now concerned). He read Rachel's book to learn more about himself, and he did... . but he felt that it was most beneficial for him to put his old GF and that r/s into proper context.

I'm hoping that NOW he will finally be able to get over her... . Who knew? A LF BPD has the same r/s issues as a Non would have with a HF BPD, and the same agonies and difficulties extricating himself from the r/s, even more than a year later! The heartache he has been suffering over their break-up (and even the stress he was under DURING that r/s) actually has been one of the stressors that was making his SA and SI recoveries so hard for him in the past... .  

At my son's NFT appointment tomorrow (Wednesday) I'll see if I can talk to his T about the other therapies you are mentioning... . I'll get that paper you linked to. Thanks! He's going to Outpatient T for his SA issues, a Psych for his ADD/Depression/SI/Anxiety issues, and is on some meds for all of that. He also has been reading a virtual library of books that were recommended to him by the Dual Diagnosis Center, including DBT and Mindfulness (both therapies practiced and taught to him at the Center), Meditation, etc. He is actually a very spiritual guy, so I think the Buddha book will appeal to him.  Smiling (click to insert in post)

Hi, peaceplease   (I love your name!). My son's NF T says that her practice has had great success with addicts; there are different points in the brain for specific addictions, and they can be targeted with precision and they are finding that years later the addicts are still clean and sober. If they are serious about the treatment, of course. I only know in my son's case that the variable in this--his 3rd try at recovery after rehab--that is new is the NFT. Yes, it's only been about 7 weeks of NFT for him, but he's different now and it just seems that he is more positive than ever before. He's been clean and sober for more than 3 months now; not very long, but good for him  Smiling (click to insert in post)

I am so sorry that you are going through this with your daughter; it sucks and takes so much energy to deal with watching your own sweet child (in our minds at least!) self-destruct. My son also had a problem with opiates (he said it made him feel "normal", and he ALSO suffered from fatigue ALL the time. I swear, when he was not self-medicating, he could sleep 24/7 and then sleep some more! One of the meds he is on (prescribed prior to his Dual Diagnosis program, and still on it) is Provigil (generic: modafinil, the brand he takes is Modalert), prescribed by his Psych. I have to say, it has REALLY helped him with the fatigue and lethargy; he is much more wide-awake and cognizant while taking it. It is not habit-forming either; if he forgets a dose or two (or more) there are no side effects or withdrawals.

Does your daughter want help? A Dual Diagnosis program, if you have a good one available, was my son's salvation... . He will tell you that, and he'd wished at the end of his 21 days that he could've stayed 6 months! He learned so much about himself and his mental health and substance abuse issues that it was a real turning point for him. I am emotional about it when I think of that program and the wonderful professionals who helped him there.  Smiling (click to insert in post)

About the validating... . We were talking about it yesterday, and he said he saw me using the techniques with my Husband (his Dad) and my other son and his wife, and thought it was cool... . I looked at him with a grin, and he said: "What? You don't use those techniques on ME, do you?" Hahahahaha! Only EVERY day, kiddo! He said he really never realized it  Smiling (click to insert in post)
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« Reply #10 on: June 05, 2013, 05:38:04 PM »

I had a bit of a revelation today at my son's NFT session, while hearing him chat with his NF T prior to the start of his treatment (he begins each session by telling her what is going on with himself since his last session, and if he is seeing any improvements/changes, etc. regarding his symptoms). Anyway, I believe that this therapy is good for him because he has had to rate a long list of symptoms and behaviors that he has that complicate his life, and it was done in a nonjudgmental way--rating on a 1 to 10 scale. He did this before his first session, and then every 7 sessions he does it again, making note of any progress or any unmet expectations. He completes this "survey" online, privately, and the results are sent to his NFT Therapist for a record of his progress.

This, along with his very matter-of-fact discussions every session with the T, has taken away the judgmental nature of his thinking about his troubles; the "character flaw" issue is now gone for him, and he sees these problems as linked to his diagnoses, not to his value as a human being. And, he himself is seeing progress which reinforces the clinical (not personal) nature of his problems.

Listening to his good-natured chatting about his issues/problems/symptoms, and what is getting better and what needs working on, with the T today, I realized all of this... . And realized that it is good for him Smiling (click to insert in post)
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« Reply #11 on: June 05, 2013, 06:04:15 PM »

It just keeps on getting better. Do you pinch yourself and wonder what happened to the two steps forward one step back?

How do you think NFT would do for someone who was not so 'switched on' as your ds is? For someone who isn't sop IT literate, or who has learning difficulties. It seems to me your son is more outgoing than not, do you think that makes a difference?

cheers,

Vivek  
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« Reply #12 on: June 05, 2013, 06:40:26 PM »

Hi, Vivek ... . My son is "switched on" at this point, and that switch was flipped during his Dual Diagnosis Program stay in March/April of this year. Prior to that program, he was despondent, suicidal, always thinking that the solution to his problems were the opiates that made his brain work better (according to him). He, in the past, went to various conventional therapies for the ADD/Depression/SI & SA issues and Anxiety, but the intensive mental health evaluations and new BPD diagnosis and DBT sessions at the DD Program somehow made it all "click" for him.

I think that his progress is happening so fast because he is really a smart guy (ADD and all!), and the NF T is doing a VERY intensive program. But, someone else, I think would do well, also. You don't need to go online to rate your progress (in the beginning he was "afraid" of using the computer, and would do it verbally with the T), and everything can be done with the T. Doing it online saves time, though, and frees up his sessions for actual T. Someone with LDs, I think, would love this T... . it helps the brain in easy ways; there's nothing that even resembles "work" in his sessions. His NF T makes sure that the last part of each session leaves him calmer, stress-free and happy.

I would say that everything depends on the expertise of the Neurofeedback Therapist, and the attitude of the patient... . If you do NOT want to be there, then it would probably take longer to see results. I only know this Therapist, but my son loves her and she loves her work, and takes lots of care with him. He, actually, is not really that outgoing of a guy; he just feels so comfortable with her--from the beginning--that he's never had trouble talking to her. I will say, though, that in the 7 weeks that he's been doing this, he has become more and more talkative and friendly and outgoing with everyone he meets... . More like he was before becoming troubled in his teens.

And, yes... . I do pinch myself and wonder, and wait to see if/when we take one step back... . I'll keep everyone posted  
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« Reply #13 on: June 05, 2013, 10:55:05 PM »

ta xx

All this is soo interesting. I am hanging on every word.

Viv 
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« Reply #14 on: June 08, 2013, 01:12:32 PM »

Wow, I love this thread. I so relate to "that face" they get when they feel invalidated. And I can so relate with seeing links between experiences (like therapy) and improvement in behavior that seem soo obvious to me but are not obvious to UD18.

I want to second Vivek 's thumbs-up on Buddha and the Borderline (thanks, Vivek !). I'm almost done with it, and it's really been helpful. Part of me wishes I'd read it six months ago, and part of me thinks I wouldn't have been ready for it. The reeeeally weird thing is that I can personally relate to much of what the writer describes; I think I could very easily have tipped into BPD if I (like DD) had had childhood trauma. I'm working on healthier coping skills anyway, in the parenting role, so dealing with my emotions has been quite a bit easier of late.

Thanks so much for your posts!
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« Reply #15 on: June 08, 2013, 02:01:20 PM »

Hi, sunshineplease 

I'm so happy you can relate to this post; I am so pleased with my son's progress with his T that I want to just put it out there for anyone else who might just benefit... . I do know that the stars would need to be aligned in the perfect sort of universe for it to work (willingness to get help, time to do it, and the funds to make it happen), but we are still seeing progress  Smiling (click to insert in post)

Today he had another NFT appointment (had a "deep state" session for an hour, an hour off, and a "wake state" session after that) and he's just so cognizant and amiable and "normal" (for lack of a better word!) most of the time. She's gearing his sessions to his specific symptoms and behaviors, and today she said that after finding out from him how things have been feeling for him since his last session on Wednesday, that she was concentrating on his "social adaptation and cognition skills" along with the other usual issues related to his many diagnoses. I truly am impressed with her knowledge and compassion  Smiling (click to insert in post)

And, it really helps a lot for her to have my input at every session... . He truly is not seeing his progress as being as amazing as his Dad and I do. Which, I believe, is a good thing... . He's not jonesing to stop T because he's "all better now." He's still careful enough in his optimism for his good mental health that he's willing to keep going... . I'm truly thankful for that 
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« Reply #16 on: June 08, 2013, 10:03:33 PM »

Rapt Reader -

Just want to say a big thank you for sharing this wonderful progress with your ds. Gives all of us with adult kids more hope.

qcr
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« Reply #17 on: June 08, 2013, 11:56:54 PM »

Questions:

Does neurofeedback work best when part of a team approach - ie. pdoc, T plus feedback T?

What resources best describe methods - are there different systems for this training?

Has anyone tried home-based training? I found this at Zengar.com for $5500.00

There are a couple feedback centers close to where i live that seem to have different programs. This would seem to be an option for gd7 as I am avoiding meds for her attentional issues with ADHD dx. It might help with my bipolar II and PTSD. It definitely could help Dd27, if she could be convinced to try it. So maybe if a home-based system could work, it would be worth the investment of $5500.00? Guess it would depend on how many treatments at $100 avg price per session would be needed.


Such a hopeful option. Puzzled why I have avoided checking out before - maybe my struggle with money.

qcr
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« Reply #18 on: June 09, 2013, 04:43:25 PM »

Hi, qcarolr 

Though my son's NF T has introduced herself and her credentials and program to his Outpatient T and his Psychiatrist, I'm not sure if they've had any coordination; my hunch is no. I think she (the NF T) wanted to make sure they were all in the loop, and that if necessary they could work together. The OP T and Psych are supportive of his NF T sessions, though, and he talks to them about it extensively during his appointments with them. I'm not much help here, am I? 

In talking to his NF T, I know there are at least 2 different NFT systems, but I can't remember the one she uses; she told me the information when I didn't have a pen and paper available, and I'd thought I'd remember, but I don't... . She did tell me about a home-based training program, and has suggested we look into it when he is finished with his sessions with her, so that he can help himself when he needs it; she was very positive about it and offered to tell us more about it when we were ready. It did sound expensive, though doable... .

My son's ADD, Depression, Social Anxiety, Impulsivity and poor decision-making (as well as Substance Abuse and Suicidal Ideation) issues ARE being addressed and alleviated. Honest Smiling (click to insert in post) She takes his symptoms and behaviors--the ones he, himself has told her that he needs "fixed" and targets them for him. She explains all of this and how and why she is doing what she is doing, but I am not in the medical field and can just absorb so much of it. I just know that he is getting relief and seeing progress... . Smiling (click to insert in post)

The home-based training you mention could be really cost-effective for you if you, your D and also your GD were to benefit from it... . I'll take down the info you posted and see if my son's NF T has heard of it or can check it out for me. His next NFT appointment is on Tuesday, 6/11th; I'll see if I can find out anything for you  Smiling (click to insert in post)
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« Reply #19 on: June 10, 2013, 05:22:13 PM »

Excerpt
I'll take down the info you posted and see if my son's NF T has heard of it or can check it out for me. His next NFT appointment is on Tuesday, 6/11th; I'll see if I can find out anything for you

I'd appreciate that, too, RaptR. I don't suppose you're in the NYC area, are you? :-)

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« Reply #20 on: June 10, 2013, 05:39:29 PM »

Excerpt
I'll take down the info you posted and see if my son's NF T has heard of it or can check it out for me. His next NFT appointment is on Tuesday, 6/11th; I'll see if I can find out anything for you

I'd appreciate that, too, RaptR. I don't suppose you're in the NYC area, are you? :-)

I do plan on asking her if she knows about the program that qcarolr mentioned, or if the one she's been telling me about is something different. If it is something different, maybe she can point me in that direction and I can report back, here  Smiling (click to insert in post)


And unfortunately, I am not in the New York City area... . Have you found any Neurofeedback Therapists that appeal to you in NYC? I believe when I was running my search to find my son's T, I saw that there were quite a few there... . I believe you can search a website called eeginfo.com and it will let you search for a T and there is info on how it works, etc. Good luck! 
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« Reply #21 on: June 11, 2013, 06:13:35 PM »

At my son's appointment today I was able to talk to his NF T about Home-Based Neurofeedback Therapy. Turns out, she knew about the Zengar.com system, but that is not the program that she is using. The system she uses is Cignet, an "Infra Low Frequencies/Resting State Network" of the brain system, which she says is very different from Zengar. The information regarding the program my son is on can be found at www.eeginfo.com, and the Cignet System information can be accessed from there. She said that a Home-Based program using Cignet would be comparable in price to the Zengar system.

Cignet is the software (Beemedic is the company that sells the equipment). This July, there will be new upgrades made to the equipment (and possibly the software? I didn't think to ask this), and she said that people will be able to buy the system being used now, used, and the prices will be lowered and it should be a good deal. My son is very fascinated by his NFT, and is interested in maybe checking this out for when he's completed his sessions with his T. We'll see... .  

His session went well today, and she told us that she started working on Initiative and Motivation sites today... . that, up to now she's been focusing on Cognitive, Impulsivity, Emotion Control, Addiction, etc. sites (everything I've mentioned in prior posts). That, before you can "put the car in Drive, you have to turn the motor on," and now he's ready for her to add Initiative and Motivation. Good news for me as a parent; I can't wait till he's able to get a job and support himself    But, seriously, I know we are in it for the long haul, and it'll be awhile... .   Smiling (click to insert in post)
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« Reply #22 on: June 11, 2013, 07:22:04 PM »

Rapt Reader,

Thanks so much for asking these questions for us all. I hesitate to start out with a home program. The deeper issues that need to be treated, the more possible 'side effects' risk I would think. By side effects I mean an increase in negative feelings/thoughts/actions. I so agree with the metaphor of filling the car with gas before putting it in drive.

When I spoke to the T using the Zengar system, he had zero interest in working with someone as complex as my DD27. And perhaps even with my gd7 unless our home situation became more tranquil. He sounds like his focus is more on people wanting to peek their performance than deal with mental illness issues at this point in his life. He mentioned his age (61) and looking forward to retirement after practicing for 30 years.

I will check out the website you listed. Seems I saw this referred to on another thread today.

I really want to find some help for my gd7 with her ADHD, anxiety etc. NOW that is not so medication focused. I will continue to look at how to add NF to her community of support. I have nightmares about her following in her parents footsteps --   

qcr
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« Reply #23 on: June 11, 2013, 07:39:16 PM »

This site has such an awesome summary of neurofeedback. And presents it is a very realistic manner. I really appreciate that they offer a suprevised home system after an initial 20 sessions are completed for issues that may be ongoing (ie. some organic brain conditions like autism, siezure disorders --- where will BPD fit into this analysis as it is not mentioned.)

They also talk about insurance, that codes to exist for covering this under biofeedback with or without therapist. Why do I go on and on. We can each read it for ourselves.

Seems a more sound approach than what I found at Zenger. IMHO

qcr
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« Reply #24 on: June 11, 2013, 07:43:04 PM »

Hi, qcarolr    I totally agree with you about starting out with a home-based NFT program; I wouldn't even touch it without prior completion of enough sessions with a T, and then guidance from her for home use. We've already broached this subject with her, and if we DO purchase a used Cignet System, she will facilitate the sale and show us exactly how to use it, and explain whatever it is we need to know... . We would only use it as a "refresher" after my son's recovery from his symptoms. I hope I am not being delusional here, but it does seem possible at this time... . We'll see  Smiling (click to insert in post)

At the www.eeginfo.com website you can run a search for a Therapist in your area; I hope you are able to find one. She's seen great progress with ADHD patients, among others. I can say that so far my son's many diagnoses/behaviors/symptoms are being addressed and being alleviated. And I know about the nightmares... . I feel like we are just waking up from ours, these days... . Good luck to you!     (I'm glad you like the website; I find it very informational!)
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« Reply #25 on: June 12, 2013, 12:08:05 PM »

Thank you, RaptR! There's even a practitioner in my town! Holy cow!

I hope my daughter will be interested. Helps migraines, too. :-)

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« Reply #26 on: June 12, 2013, 03:43:11 PM »

Thank you, RaptR! There's even a practitioner in my town! Holy cow!

I hope my daughter will be interested. Helps migraines, too. :-)

I'm so glad you found someone nearby to you, sunshineplease  Smiling (click to insert in post) It would be great if it works out for you and your daughter... . Yes, it is supposed to help migraines, too  Smiling (click to insert in post)  In fact, I haven't said anything about this before (because I've only been writing in regards to my son's BPD symptoms and treatments and recovery process), but for the last month or so I've had some NFT sessions of my own with my son's NF T; maybe 5 or 6 of them. The reason I agreed to do them (after all, I'M not the patient, and I really want the bulk of the $$ we are paying for these sessions to go for my son) is because the stress I've been dealing with over the last 3.5 years (when my son's troubles became pretty dramatic and traumatic, not only for him, but for our whole family) was manifesting itself in my grinding my teeth in my sleep, and clenching my jaw subconsciously during my wake time. The TMJ had become really painful and intrusive to my well-being (as well as the stress!). I've been grinding my teeth (the dentist said it was stress-related) for many years, though... . It just got WAY worse in the last 3.5 years... .

Anyhow, after these sessions, I can say that my husband told me this morning that since I've started NFT he hasn't heard me grinding my teeth at night; that it used to wake him up! He doesn't sleep through the night ever, and he used to hear me grinding my teeth regularly, and now he's realizing that he doesn't anymore. I do know that during my wake time, I don't notice myself clenching my jaw very much, and when I do, I am cognizant of it and stop it immediately (I never realized I was doing it before; other people would point it out to me!). Some mornings I wake up with no pain in my jaw at all, some days I don't notice the pain, or I have very little. I won't say the pain is totally gone; it's not at the scale that it was before NFT (I'd gotten a nightguard several years ago and hated it; it was made by my dentist, but I could never sleep with it... . I kept chomping on it--even unconsciously!). I'm not "better" just yet (I still feel my jaw aching--less painfully though--from time to time), and I'm not sure how many more sessions I'll need, but I'm hoping it won't be too many more. I truly want the $$ to go to my son's recovery and chance at happiness in the future  Smiling (click to insert in post)


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« Reply #27 on: June 13, 2013, 10:22:00 AM »

Wow, RaptR. That's amazing. I'm a night-grinder, too, so I read this with special interest! Thanks for putting it out there. NFT for all!

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« Reply #28 on: June 13, 2013, 06:25:56 PM »

Wow, RaptR. That's amazing. I'm a night-grinder, too, so I read this with special interest! Thanks for putting it out there. NFT for all!

Smiling (click to insert in post) I got a kick out of that    One thing to remember if you search for a NF T on that www.eeginfo.com website, make sure that the one you find is using Cignet (if you are interested in the same program that my son's T is using). She, obviously, recommends that over the Zengar program.

Also, at my son's session today I asked her about something that I've seen posters chatting about: whether Neurofeedback Therapy can address "empathy." My own opinion, when thinking about that, was Yes; I can see it in my own son's recovery process. He is much more regulated in his emotions, and therefore "comes out of himself" most of the time now, which seems to make him more aware of other people's situations, opinions, feelings, etc. When I asked my son what he thought about that subject (without personalizing it to himself; I didn't want him to feel like a guinea pig!  Smiling (click to insert in post) ) he said that he thought that NFT makes his brain work in such a way that he is more aware of other people's facial expressions and that he is more cognizant now of "social cues" than he was before. He said he figured that this would cause someone to be more empathetic in the long run... .

So, when I asked the Therapist whether empathy could be addressed with NFT, she said Yes. Now, she showed me all the spots on the head related to the right side, left side, frontal lobe, behind the head, etc. for all the different locations to target for social anxiety, stress, cognitive skills, emotional regulation, etc. I'm pretty terrible at remembering all the technical brain terms (sorry! My son is way better at this than I am at this point!), but she said that if someone's brain is able to stop just seeing the world in "their own little space" then empathy can occur. She says that she works on making it possible for someone's stress to be "put into a little pocket in the bottom right side of the brain" to free up their cognition skills which can also enable empathy to be felt. She's doing this for me so that my stress doesn't affect my body so much, resulting in the clenching and grinding of my teeth. I hope some of this makes sense... .
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« Reply #29 on: June 20, 2013, 09:40:04 AM »

In keeping with the original intent and subject of this post, something I never expected (but should have!) happened this week with my dBPDs36... . Before yesterday (Wednesday) his last NFT session was on Saturday. On Monday he had an appointment with his Outpatient Therapist, which went really well... . He willingly went to the appt. after having a decent weekend being with my H and me, helping his Dad in the yard with the multitude of landscaping projects they are working on. After the appt. he came back with a grin, saying that his OP T was very "proud" of his progress. All good Smiling (click to insert in post)  So, what happened on Tuesday really surprised me, and knocked me out of my delusion that he is "all better" and that I can just go on with my life as if progress was going to happen unencumbered by his BPD... .

This is really not a terrible setback or anything, but really was a reality check... . Tuesday morning he had his monthly appt. with his Psychiatrist. He went willingly but unenthusiastically (he likes the guy, but doesn't think he's helping him much--an opinion I don't happen to share). He did, however, get into the spirit of the session once inside, and in the waiting room I heard a lively, friendly, engaged hour-long conversation between the 2 of them. The Psych really is interested in my son's NFT, and loves to talk to him about it. When the session ended, my son came out amiably but happy to be finished, and the Psych was absolutely glowing... .

Now, this Psych has been seeing my son for almost a year--has seen him at his worst: addicted to opiates, depressed beyond all belief, wanting to self-harm, unmotivated to do anything but sleep in the fetal position 24/7, angry, obstinate, etc. (The normal for dBPDs36 for the last many, many years). On Tuesday (and a month ago, after his last Psych appt.), the Dr. couldn't contain his happiness and excitement that my son was doing as well as he was  Smiling (click to insert in post) The Dr. said to me this time: "He's doing so well! He's so much more 'in the moment' and is learning so much about his brain! He really is interested in that, and it's really helping him!" Smiling so much, I couldn't help smiling back and agreeing with him that this was true, and was, indeed, "a good thing... . "  Smiling (click to insert in post)

When I looked at my son, thinking he'd be pretty darn proud of himself, I saw the fear in his eyes. And it turned so quickly into depression that he was hanging his head and uncommunicative before we even got into the car in the parking lot! We had to do some errands after this appt., and during the ride he was pretty quiet and depressed. I just didn't know what to say or do, or if I should say or do anything    I know how to validate, but since he wasn't raging at me (his raging is always directed inward, though he was just depressed that day, and not raging), or even saying anything at all, I tried to just not get sucked into his depression. I didn't question him or try to pry anything out of him, but talked conversationally about what we had to do that day. He responded quietly and with resignation, no aggression.

I knew he had an appointment with his NF T the next day (Wednesday, yesterday), and decided to let her deal with whatever it was that was causing his depression at that session. I have read the Family Guidelines and had the feeling that he froze when the Dr. heaped on the praise--petrified that now that he was getting "better" everyone would expect him to just go out and live the life that we all want for him: getting a decent job, supporting himself, moving out eventually and living on his own. Now, my H and I know that it will take more time for these things to happen, maybe even a long time for these things to happen! Part of the reason he is doing better is because of his ongoing therapies and the soft landing place available for him at this time with us at home. We know that, but I wasn't sure how to let him know that without making him more depressed... .

Luckily, my son has given his permission to me to be able to communicate with every one of his Therapists/Dr.s, so I emailed his NF T that night--the night before his upcoming session--and let her know what was going on with him since seeing the Psych so she had time to decide how to help him if she could. Yesterday morning he was still depressed--for the first time since going to NFT he was late getting ready to go, agitated in the car, not looking forward to the session. Well, I'm not sure what she did (I only know that it involved the left side of the brain!), but his double-session went really well... . She chatted with him about how he'd been doing since Saturday, he was animated and honest with her, and she discussed with him how they should progress for that session. They discussed having him not go for such a long stretch of time between sessions in the near future, and we all agreed that we could do that.

We left the appt. with him in a much happier mood, and the rest of the day (and today) have been back to his new "normal" and things are good... . And, now I have to continue to remember to be constantly validating; he is still BPD and still needs time to deal with his life and himself, and I can't take his recovery for granted 


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« Reply #30 on: June 20, 2013, 07:54:19 PM »

Hey RR, do you think it would have been helpful if you had tried to validate him in the car? Maybe a question like: 'you are quiet, do you want to talk?'

I ask this because when I watched the Fruzzetti video recently Encouraging peace in a BPD family he pointed out that not acknowledging the other can be invalidating.

Perhaps your body language and tone in general was implicit validation for how he was feeling... .

what do you think?

Vivek  
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« Reply #31 on: June 20, 2013, 07:56:23 PM »

ps I am so glad you are able to talk to his Ts. You are very much a part of the process of healing and your insight is positive and must be so reassuring for him. It's good the glitch was able to be overcome.

never easy eh?   
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« Reply #32 on: June 20, 2013, 09:05:59 PM »

Hey RR, do you think it would have been helpful if you had tried to validate him in the car? Maybe a question like: 'you are quiet, do you want to talk?'

I ask this because when I watched the Fruzzetti video recently Encouraging peace in a BPD family he pointed out that not acknowledging the other can be invalidating.

Perhaps your body language and tone in general was implicit validation for how he was feeling... .

what do you think?

Vivek   

Yes... . I should've been doing that in the car, and I knew it; I think subconsciously I was just either afraid to have to deal with it--maybe incorrectly--or was hoping he would say something to make the conversation more natural. I whiffed    I'll look at that link you gave; I just haven't had a chance to see it yet  Smiling (click to insert in post)

There always is the chance that my non-verbal reaction was actual validation for him, though... . We got along fine, and he was just depressed; we actually have a good connection with lots of shortcuts to it. I think the fact that I didn't absorb his depression and try to "drag it out of him" was probably a help... . Who knows? But, yes... . it's GREAT I can talk to all of this T's; it saves a LOT of time and helps his recovery a lot  Smiling (click to insert in post)
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« Reply #33 on: June 21, 2013, 09:52:09 PM »

Rapt Reader - This quick recovery is such a good thing for you both. It makes such a huge difference when our adult kids sign those releases to involve us in their treatment. Is is essential, especially when they are in our home, to be able to support all sides of the story and have a better understanding of what support our kids need. You and ds are doing great with each other.

The reciprocal nature of your r/s with your son now helps both of you stay connected with each other, and with the professionals that are so essential for his contiued recovery. My DD is just taking some baby steps in this direction, even with huge trauma in past couple weeks, to allow me again into her realm. I won't distract with my story here, but we have had some awful/good days this week. And I have done pretty good at staying composed, if not validating at least not too invalidating (except for those really huge invalid things she was asking of me).

I also watched the Fuzzetti video on validation - it helped me alot with accepting my imperfect use of the principles. And gd's T has encouraged me with the ability to make 'repairs' in my family r/s's when things were not validating or protective enough.

Thanks so much for sharing your story.

qcr
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« Reply #34 on: June 21, 2013, 11:42:02 PM »

Hi, qcarolr    Thanks for your reply; I know how stressful your life is right now, and have been reading about how complicated things are with your daughter and how hard it has been for you, so I appreciate your taking the time to read my posts... .    

Yes... . the communication between myself, my son, and all of his Ts and Dr.s is what is making his recovery easier (well, all of that and the support and information I am getting from this site!   ). I do have to keep forcing myself to realize that my son's recovery will take time, however (the subject of this whole thread). He looks and acts so much healthier and better than just 4 months ago, that it's easy for me to be lulled into thinking: "He's OK now... . he's going to get through this in no time; I've got my sane and sober son back!  Smiling (click to insert in post) "

Today after his NFT session (yes, another one since Wednesday), in the car on our way home he opened up on his own about what was making him "agitated" (his word) on Tuesday. Although I believe that the reason he was depressed was the fear of success, there's another facet to what he was going through, and will be going through for a little while more... . {{{{{sigh}}}}} And, as soon as he started telling me, I realized what my subconscious fear of this discussion on Tuesday was: he told me that now that he's been clean and sober for almost 4 months, this is now a few weeks later than the time that he always would start to relapse in the past. In the last 4 years he's been in and out of 3 Rehabs; and the last 2 times he relapsed right after the 3 month mark. I knew this, and it's been in the back of my mind, and I never want to think about it, let alone talk about it. PTSD for me?  

Anyway, this time things are different: the Rehab was a Dual Diagnosis Program that (finally) addressed his mental health issues, and also diagnosed him with the BPD and taught him DBT and gave him and us the tools to use for recovery. And, of course, this time we've added NFT to his recovery process. He told me that he's been "itchy"; that the nice weather reminds him of the days when he had the freedom to go out with his car... . but that all his time was tied up with wanting drugs, trying to find the money to buy drugs, doing favors for "friends" (this was usually giving rides to appointments, shopping, or even a ride to pick up drugs) in exchange for drugs. Drugs gave him a reason to get up in the morning, something to live for in his miserable, depressed and pointless life.

This kind of discussion with him is VERY hard for me... . I hate it, and want to just forget the past and move on and not have to even have my mind think about the seedy, gutter-like life he used to live. I really think I have PTSD over it; the memories of dealing with it for the last more than 4 years prior to 4 months ago are really hard and painful for me. This is why I "whiffed" on the validation or willingness for the conversation on Tuesday. I couldn't put my finger on it before he brought it all up on his own today.

Now, there has been progress in this area... . He told me that in the past he would go 3 months or so clean and sober, and then relapse with just "a little bit" once a week, and have no problems. So then he would use a couple days a week, no problems. Then, he would do more than a couple days a week, and then he would have problems. Then he would have BIG problems, and it would snowball out of his control and things would then be horrible again till the next Rehab. He said he can't have that happen again... . But he's been thinking about all of this, and trying to deal with it. Then he said: ":)on't panic; I'm getting over it... . Smiling (click to insert in post) "

And then I got it: His fear of success is that once he's out in the world again--driving, working, socializing--he's afraid of getting sucked back into the drug lifestyle by being in the same town, running into the same people, driving past the same places (which are Everywhere) he used to purchase drugs. I think I subconsciously knew this, and fearing my ability to navigate the conversation, I avoided it.  

He has another NFT session tomorrow (Saturday), so I emailed his NF T this information. She's very perceptive and attentive, and I know it helps her with her treatment of him. He has a double session tomorrow, so that is good... .

And yes, Vivek      It. Is. Never. Easy.  
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« Reply #35 on: June 22, 2013, 08:32:51 AM »

Rapt Reader - this new self-awareness is a huge success for you DS. And his caution. And his being able to share all this with you. And your being able to tolerate your fears and listen.

Tolerating fears - this is my biggest stumbling block with my DD. It shuts me down, sends me away from her, makes the situation feel intolerable - unendurable.

Your ability to lean into the NF T by sharing these conversations that help focus your DS's therapy is awesome support and validation for YOU. I am learning that one of the most needed benefits of our self-care support network is to find validation for ourselves and how hard we work to continue to love our troubled kids.

Doing the right thing (click to insert in post)  

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« Reply #36 on: June 23, 2013, 05:17:07 PM »

qcarolr... . You are right, as usual    About everything you said 

As you are finding out yourself (I've read your latest posts!), when we are able to communicate with our pwBPD's Dr.s and Ts, it is very validating to have our insights acknowledged and acted upon, like we aren't seeing or hearing things about our loved one, but have valid truths to share. And, to have this also move their recovery in the right direction, how much better than that can it get! I'm so glad that things seem to be heading in the right direction with your DD, also... .  

I'm realizing that one of my problems with talking to my son regarding his past substance abuse issues, and the residual emotional issues he is having with his past addictions right now, is because I've always known that his problems with drugs were secondary to his mental health issues. That is still true, but now that his mental health issues are being addressed and treated, I guess I subconsciously just expected the drug abuse issues to dissolve (or something else just as delusional)    It actually confuses and frightens me any time he mentions anything drug-related (as in: things used to be this way, or: in the past I used to just do this [insert something terrible in my mind!] thing... . ). And I retreat into my "safe place in my head" and pretty much stop talking. I do listen, and try not to wince. I don't yell or argue or say invalidating things to him, but it's hard not to freeze up.

I'm just so used to believing that his untreated (for so long!) ADD, Depression, Hyperactive Thyroid, Social Anxiety, and now the newly diagnosed BPD, were all the reasons for his past drug use--that now realizing that his past drug use is still causing him angst and turmoil is hard for me. I will deal with it... .
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« Reply #37 on: June 24, 2013, 01:20:09 AM »

Hi there, just wanted to share this... . many years ago I did some training and part of it was a 'role play' about being addicted to heroin. What it showed us was the buzz that could be got out of just getting the next deal. It was easy to see how you could fall into all sorts of negative behaviours, lying, cheating, stealing in order to get the next fix and how it provided a buzz when you were successful. And how your friends formed a close knit circle of insiders who knew what it felt like... . etc etc just being a part of the social group felt good, there was a place you belonged etc.

So I learnt from that, that there is more to the culture of addiction than you would consider if you just looked at the physical implications.

Rapt Reader, I think your son is very brave to be successfully confronting this - and talking with you about it.

I am so happy for you,

Vivek    
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« Reply #38 on: June 24, 2013, 12:11:35 PM »

Thank you, Vivek , for your words of wisdom (I'm not kidding!) and information... . You are a blessing to me as usual    I appreciate the story you have told here... . It's thought-provoking  Being cool (click to insert in post)

This morning at my son's NFT session, I spoke with his T about this subject, and she said that he just needs time to sort it all out... . That in the past, after rehab (without this new T), he could just go so long without being drawn back into that lifestyle because he wasn't "thinking straight." Now, with this new T, he really IS thinking straight, and he's being more realistic and cognizant of how much that lifestyle has hurt him, and it's causing him to be drawing a bit into himself right now to do his thinking and working it all out in his head.

In fact, after the appointment he even told me (in the context of a conversation regarding NPD vs. BPD), that where the Narcissist doesn't even think that he's got a problem, and therefore won't even seek help most likely, the BPD (and here he meant himself in the context of our conversation) realizes just how much harm his dysfunction and behaviors have caused his life and himself, and he wants to get past it and learn how to make it all better. He really is making progress... .   Smiling (click to insert in post)
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« Reply #39 on: June 24, 2013, 02:04:23 PM »

 Smiling (click to insert in post) Doing the right thing (click to insert in post)

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« Reply #40 on: June 24, 2013, 06:24:08 PM »

Thanks you for your kind words  Smiling (click to insert in post)

The thought of your ds coming to grips with his behaviours brings tears to my eyes. How hard is this to go through... . He is processing the harm he has caused himself... . then he can begin to see the hurt he has caused others... . and how I would like to save him from that. Sadly, this is essential for his recovery. These words seem blunt and callous, all I want to do is protect our children... . how misguided is that?

I think of my dd and how it would be for her, if she was to recover. For me, learning to change myself and to acknowledge my complicity in her mental illness has been hard enough, and this process continues on and is painful and almost all consuming. How much harder for my dd would it be... .

RR in the book 'The Buddha and the Borderline' Keira talked about recovery not making sense and not working until there was a 'spiritual' component. Until she was able to connect with the universal energy (aka God) and the sense of community she found in Buddhism. Perhaps having that can ease the pain... . I know it helps for me... .

lots of love to you and your boy   

Vivek      
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« Reply #41 on: June 24, 2013, 07:20:45 PM »

Hi, Vivek      

You are very welcome; your posts here have been really inspirational for me... . Along with so many others here~~Everyone: I thank you all  Smiling (click to insert in post)

I really feel bad for you and your relationship with your daughter; she is high functioning, right? I really find that the HF BPDs in my life just would probably not ever really realize that they have a problem, and need help. For all his troubles, the fact that my son was low functioning (and actually really still is) is probably the only reason he ended up reaching his "bottom" in February 2013, which was the catalyst for all that followed... .

I do see signs that he's starting to process the harm he has caused to our family; he says many times how impressed and surprised he is that my H and I have been so supportive after all he has done, and that he respects us so much for hanging in there when other parents might've kicked their kid out and cut him off from any financial or emotional support. He says often that he realizes he is lucky to have us, and he doesn't know if he would've been able to be as forgiving and supportive to someone like him, if he was in that situation himself.

He's apologized for things that have happened in the past, if there is some reason it comes up... . I do know it is hard on him remembering these things without getting depressed or very sad... . I am lucky that he knows his problems were situational, and not from parental abuse; all abuse came in the form of peers bullying him, or teachers never understanding that he wasn't trying to antagonize them when he was in school  There are times that he still deals with agitation about something we ask him to do or express some sort of emotion that he isn't "reading" right, but he told me today that he's trying to understand when he does that so he can think it out better... .

I actually received "The Buddha and the Borderline" in the mail late last week, and my son grabbed it and is reading it (along with about 3 other BPD-type books!). He's about 3/4 of the way through, and really likes it  Smiling (click to insert in post)  He says that he hasn't gotten to the "Buddha part of it yet" but is finding it really helpful and interesting. He promised he will give me a "book report" after so I can share it here   I am reading Valerie Porr's "Overcoming Borderline Personality Disorder" right now; when we are both done we are going to trade books  Smiling (click to insert in post)  He absolutely loved Rachel Reiland's "Get Me Out of Here" and read it in an all-nighter a few weeks ago; I haven't had a chance to get to it yet, but he is encouraging me to read it. I have to say that our sharing this journey through his BPD treatment and recovery is making it easier for all of us in our family. I don't think it would work as well any other way... .

I truly wish that your daughter would be able to open her heart to realize that both of you need to work on this; her blaming only you for all her troubles will never work for her... . Too bad she can't see that... . I am so sorry that this is a journey you are taking alone 
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« Reply #42 on: June 26, 2013, 12:07:12 AM »

ahh, RR (sounds like a pirate eh?  Laugh out loud (click to insert in post)) Thank you for your kind words. To know it is working for you makes me feel good   I am not exactly alone... . I do have my dh who is 'mis-stepping' beside me in this journey. I have to wait for him to catch up.

But I too have you all here 

Another question... . if you can answer it... . I have seen on UTube, people 'playing' games as part of NFT. Does your ds play games, do exercises, or what? ... . does the Neurologist design it for him or is it already included within the software program? ... .

You may have answered this and I have just not taken it in... . maybe you can't answer it... .

Vivek  
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« Reply #43 on: June 26, 2013, 01:24:51 PM »

Another question... . if you can answer it... . I have seen on UTube, people 'playing' games as part of NFT. Does your ds play games, do exercises, or what? ... . does the Neurologist design it for him or is it already included within the software program? ... .

Vivek   

Nope... . No computer games. He started out with "scenery" coupled with soothing music/sounds: Many different species of fish in the ocean; a lake with birds flying overhead and trees in the background; the change of seasons of one tree in a peaceful setting. He graduated to a documentary about migrational bird species with soothing music and minimal narration, then to movies. Everything she has picked for him to watch is keyed to the electrodes (?) and the computer to evoke some emotion to gauge the brain waves. The movies are very motivational; one was about a Dr. with Robin Williams, another was a Hallmark movie: Head of the Class, a true story about a guy who grew up with Tourette's syndrome and made it through many hardships of misunderstandings in his early lifetime (he wasn't diagnosed till he was like 12 or something, and at that time there was minimal understanding of treatment). He ended up making it through college, then getting certified to teach and then getting his Masters, and eventually getting the "New Teacher of the Year" award for his state (don't remember the state). All while majorly exhibiting his symptoms of tics that threw almost everyone "off" and having a very traumatic time of trying to fit into the world and finally get a job teaching elementary school. A VERY inspiring movie that my son reacted to emotionally and LOVED.  Smiling (click to insert in post)
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« Reply #44 on: June 26, 2013, 11:18:01 PM »

ta 
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« Reply #45 on: July 04, 2013, 03:05:39 PM »

You're welcome, Vivek   Smiling (click to insert in post)  He really likes these movies (he's seen quite a few of them now; every one of them is inspirational: someone has a disability or issue, and in the end they "make good.". The one with Robin Williams was "Patch Adams" I found out, and he saw recently the one about the young girl who had an arm chewed off by a shark, but continued surfing anyway. For some reason his NF T found that inspirational movies work better with the Cignet Program of Neurofeedback, and that's what she uses. She told me that she does use games, but with kids (with ADD or Autism Spectrum issues), or in one case, a teenaged Autistic boy who always wants to bring DVDs of his own that have too much violence in them for the low-frequency Cignet Program to work correctly. She gently put a stop to that... .

In the spirit of the original theme of this thread, something happened today that I almost messed up by not remembering to constantly validate: Today being the 4th of July, my dBPDs36 was hoping to be able to take it easy (and I would've liked to, too!), but my "yard-work-aholic" Husband was gung ho with his mid-week day off from work, and he had all sorts of things to do to get our 2 Acre yard in shape. He let my son sleep late, since he needed the riding mower to hitch to a cart for him to drag big tree branches over the bank after he pruned many overgrown trees. S36 was supposed to mow the lawn (which he is now doing as I type), but H let him off the hook early in the day so he could use the mower, himself, as I said.

Anyhow, getting used to taking it easy, when my H called for S36 to come out a couple hours ago to help load big branches and do some other yard work before mowing the lawn, my S36 was pretty grouchy preparing for the rest of the day doing work outside. Of course my first inclination was to snap at him: "What's the problem? You've taken it easy all day, and are lucky enough to have a late start, and Dad is working so hard that the least you can do is help him cheerfully!" Anyone on this site reading this will have a great idea how that would've worked out!

Well, something clicked in my brain before I uttered a word, and I remembered the mantra of this thread: "Need to remember to be constantly validating!" (take my word for it, I absolutely have to tell myself this all the time!), and I said instead as he started grumpily heading out the door: "I know just how you feel having to go outside to work when you don't want to... . I feel the same way sometimes!" And with that, he nodded resignedly and has been helping my H this afternoon and is now mowing a very large yard, navigating many trees, flower gardens, vegetable gardens and a 1/3 Acre pond! It's an art, I have to say, and though my H doesn't mind doing it, my S36? Not so much... .

Conflict averted, H happy, S36 semi-cheerfully mowing the lawn, and me getting ready to put country-style spareribs on the grill. Have a good 4th of July everyone!  Smiling (click to insert in post)
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« Reply #46 on: July 04, 2013, 05:25:11 PM »

So interesting, Rapt Reader.  The months before my son died, he had me watch Soul Surfer with him at least 5 times and I know he watched that movie over and over again.  He loved the hymn they sang in the outdoor church!  He played it over and over again, probably dozens of times.  Patch Adams was another one and there were many more, I just can't remember the titles.  They were all about the human condition that unites us all. 

The info about neurofeedback is fascinating.

I love your validation.  It works so well and is helping your son recognize his feelings.  A wonderful, inspiring story, Rapt Reader.

Thank you.

Reality

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« Reply #47 on: July 06, 2013, 09:38:46 AM »

Thank you, Reality, for your kind words... . It seems like your son shared the artistic, creative and sensitive qualities that my own son has. The world is sometimes a confusing, cruel place for people like them, and trying to find a way to navigate it safely is such a traumatic experience.

I like how reflective and honest you are, and I'm wondering if there is any advice you can give me? My son is recovering, but is still himself--BPD and all!--and as much as I am trying to learn how he feels, sometimes he's an enigma to me. He's living at home, and starting to fit into our world better (which is a wonderful, happy thing!), but right now he is still leery of the world in general. Stays close to home where he is safe right now... . Maybe it will just take time; the problem with opiates is always something he fears will recur, and I think he is "nesting" with us as protection. I'm sure it will pass; the Therapists he sees tell us so. I'm just rambling now; it is my greatest fear I guess.

Thanks for checking in on this thread; I always value your input   
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« Reply #48 on: July 06, 2013, 06:56:51 PM »

Rapt Reader,

May your wonderful son find one true good friend, who sees his gifts and supports his steps, just as he will surely do the same!

Maybe this wish has already been granted!

I mean, of course, other than you and your husband.

Reality
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« Reply #49 on: July 07, 2013, 07:02:22 PM »

Rapt Reader,

May your wonderful son find one true good friend, who sees his gifts and supports his steps, just as he will surely do the same!

Maybe this wish has already been granted!

I mean, of course, other than you and your husband.

Reality

Wow, Reality... . I truly think you hit the nail on the head! Yes! That is exactly what he needs... . He is doing so well right now with his sobriety and learning about his issues, and realizing what in the past has caused his troubles. But, I see a melancholy in him (not depression so much, so that is good), because he is 36 years old and he feels he has nothing, and he can't see how he can accomplish what he needs to, to live a good life. Now, as you know, my H and I know he is a talented, wonderful person, but at this point his self-image and self-esteem still hasn't recovered. So many years of bullying, trauma, and people not understanding him has made him uncertain of himself and his abilities... . even those artistic, creative abilities that are so unique to him and wonderful that everyone who sees his work will praise him. He doesn't even hear it... .

You are very insightful, and from your keyboard to God's ears 

  Rapt Reader
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« Reply #50 on: July 17, 2013, 10:16:31 PM »

I just want to give an update. Today made my son's 3rd month of NFT; he is now going every Wednesday and Saturday, but going for 2 (one hour) sessions per day. Still intensive, but spread out more. He's been on this schedule now for 3 weeks; he, his T and I discuss his sessions comprehensively to make sure his progress is not slowed down by going twice/week. If at any time any of us feels that he needs to go more often or for more sessions, then we can easily go back to that. But, for now, he feels he's doing well and so do his T and I (and my husband, and his Outpatient T, and his Psychiatrist). In fact, he had an appointment with his Psych just yesterday, and once again Psych came out with my son afterwards beaming and patting my son on the back, and shaking his hand, and telling him how "very well!" he is doing  Smiling (click to insert in post)

My son is now almost 5 months clean and sober. His NF T is still working diligently to help him with that, as is the OP T and Psych. After his last 2 ("normal" rehabs, he was already starting to relapse here and there before the 4th month point; the ONLY difference now is the addition of the NFT to his recovery. Well, that and the fact that I've become a member here and I faithfully apply everything I've learned here since he got out of the Dual Diagnosis Center in April. I always need to remember to be constantly validating~~still! He is still BPD, but less and less each day... . Really! He knows it, too, and apologizes when he surprises himself with BPD behavior. He reads his books about BPD religiously, and we discuss his books, my books, and the books we trade off and read together... .

My son was the brightest, smartest, most artistic and creative kid in the universe until the very first day of Kindergarten... . He was a cartoonist since age 3, an artist as soon as he could hold a crayon, and wanted to be a movie producer since age 4. He left the house that morning (undiagnosed ADD and all!) all excited and confident waiting for the bus to take him to the first day of school (he'd never been to pre-school). He came back that same day, head down, trudging slowly down the driveway back to the house with his brand-new prized He-Man back-pack dragging on the gravel behind him. He was beaten down and his self-esteem had inexplicably (to his Dad & I) plummeted. And it had stayed that way for 31 years... .

A couple of days ago he had a breakthrough: He told me that, that day--the first day of Kindergarten--was the day that he "lost himself." He went to school as an artist, writer, future movie producer; and no one in school saw that in him. The teacher got angry when he daydreamed out the window, didn't get his work done in time; got lost in the hall on the way to the Library, boy's room, and cafeteria. He was the last kid--all alone--on the swing set when recess was over and everyone else was in class. The other kids laughed at him, teased him, bullied him. He came home that day not knowing anymore who he was; if he wasn't the smartest, brightest, most creative artist that his parents and family members had ever met--then who was he? Was he the lazy, crazy, stupid kid everyone in school thought he was? In 1982 where we live no one ever heard of ADD; and it wouldn't be until 1999 that he was finally diagnosed with it. After all the BPD damage was done... .

He has a lot of work to do, to get back that confidence he had when he was 5 and walking excitedly down the driveway on his way to his first day of Kindergarten... . But now, I see the light in his eyes again: my 5 year old son is in there, happily trying to coax his 36 year-old self to be that artist, writer, movie producer... . And for the first time in 31 years, he is starting to find himself again. 









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« Reply #51 on: July 17, 2013, 11:03:36 PM »

thank you RR. I am so happy for you, your son, your family. I must be vulnerable today, the tears are falling freely for you, I think I should be standing up and calling out YES! nevermind, tears will have to do.

lots of love to you and yours,

Vivek    
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« Reply #52 on: July 18, 2013, 10:08:08 AM »

rapt reader  Doing the right thing (click to insert in post)

So much joy for you and your ds in my  . You are both moving together is such a hopeful direction with new awareness every week. Hoping this processing of these old hurts builds the courage needed to keep moving in our tough world.

I am beginning to acknowledge these same truths with my dd27. she is slowly opening her heart to some past hurts, and staying safe with this. Praying for her intake at the intensive new program tomorrow to be a start of something good for her. She has persevered waiting for a month to get to this point. Maybe NF T will be in her future for the ADD and NLD that plagues her from a very early age.

Constantly validating - or making repairs for invalidating actions.

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« Reply #53 on: July 18, 2013, 12:59:35 PM »

Hi, Vivek    and thanks for your heartfelt well wishes and comments... . I pray that you and your daughter get to the place where you can at least communicate happily, and that she will start on the road to recovery... . Hang in there, have faith in your BPD toolbox, and keep learning. When the time comes for you to use your talents you will be ready! You know way more than I do, so apparently the universe is preparing you for great things... .

Thank you, qcarolr, for your well wishes also... . Your attitude with your daughter is good; I'm so hopeful that her stay in this next program is life-changing for her. We never know the outcome of circumstances that seem so scary in the beginning, but then have the potential to end up happily. "Constantly validating - or making repairs for invalidating actions." Yes! That is exactly what we are here for and able to do... . That is in our control  Doing the right thing (click to insert in post)

My son has told me that the validation he received at home for his talents and personality traits were always fine when he was young; it was the invalidation (and he used that word) of who he was and the talents he had all throughout his school years, starting that first day of K, that did the damage to his psyche. There's another thing he and I have talked about too... . As the oldest child with a brother 2 years younger, he'd always at least had that "older, wiser, respected brother" image gifted to him by a younger brother who idolized him for the first 5 years of his life. But, as fate would have it, once younger brother started Kindergarten himself, he realized quickly that he and his friends--and every other kid he saw around him--were the "normal" ones, and that his older, talented ADD brother was "lesser." By the time my BPD son was 7, the loss of even that role of esteemed older brother was lost to him. And that invalidation of his self-image, combined with the contempt of his younger brother, has caused the breach between them, that continues on to this day... . A double invalidation whammy that sealed his fate by the age of 7.

Now that these things are coming to light--and at this point I have been able to give bits of information to my younger son, so he can see what's been going on from a different view--both sons are starting to get their "aha!" moments, and I am actually hopeful they will eventually fully reconcile. They are "talking" (if you count email cards and notes), and that in and of itself is major with these 2. Even my uBPD DIL (younger son's wife) is softening up her attitude about BPD son, and I can foresee for the first time in years a reconciliation between the 2 of them, too... . Younger son & DIL have recently had their own infant, and that is changing their attitude and understanding of BPD son. Nothing like a first child to open one's mind to the peculiarities of life  

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« Reply #54 on: July 24, 2013, 07:07:19 PM »

Another update 

Today on our way to my son's Neurofeedback session he told me that he has finished reading "The Buddha & the Borderline" by Kiera Van Gelder. He said that he really liked it, and got a lot from it. He liked it as much as he liked "Get Me Out of Here" by Rachel Reiland. He said that he saw himself in both books, but the most helpful thing for him was that in both books he saw his old girlfriend; the girl who he now believes is BPD (high-functioning). That relationship was the "one" for him; his soulmate as far as he was concerned. It lasted about 2 years with several break-ups, and only ended for good a little more than a year ago. He has been torn up over her for so long--and the trauma of her, the r/s, the break-up & his hope that they would somehow get back together, had interfered with his recovery from drug addiction the last 2 times he went to the "normal" rehabs (she was his "drug buddy".

Now, what is interesting, is that this recovery process is going so well this time and I've been attributing this success to:

1). The Dual Diagnosis Center (instead of regular rehab) & the new BPD diagnosis

2). The addition of Neurofeedback Therapy to his OP and Psych Therapies

3). My finding this website and all the tools we've been using learned here

Now, I believe I have to add another: 4). His reading of these 2 books and finally getting a good understanding of his BPD soulmate girlfriend, so that he can move on in the knowledge that it never would have worked out.

I learn something new every day    Now, he told me that he recommends both of these books to people with BPD and also their loved ones and family members. He thinks that the first one for a family member to read would be "The Buddha & the Borderline" and that "Get Me Out of Here" should be read next. He feels that the first would be less "hard-core" a read, and a good preparation for Rachel's story.

So, there you go... . I promised a "book report" from my son, and I was able to give you one!    I haven't read either book yet (I'm still reading "Overcoming Borderline Personality Disorder" by Valerie Porr, and finding it fascinating and very helpful. I'm taking my time, soaking up every word!), but I will now that he's finished "The Buddha" one (since he advised me early on to wait, and read it first... . ). Thanks to everyone for being interested in my son's story... .
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« Reply #55 on: July 25, 2013, 12:49:15 AM »

Thanks RR, I really like your ds! Such a sensitive young man 

The Buddha book was wonderful. The author Keira can be seen on a video documentary:

Back from the Edge

Which is a 48 minute program about BPD based on interviews with recovered BPD people. An excellent view. And it has great graphics explain about the neural pathways explanation for BPD.

Looks like I have to read Rachel's book too 

Vivek    
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« Reply #56 on: July 25, 2013, 08:33:25 PM »

Thanks RR, I really like your ds! Such a sensitive young man  Smiling (click to insert in post)


Looks like I have to read Rachel's book too 

Vivek    

Well, he does recommend it very highly to parents of BPD children    He says it will help to understand someone with BPD--especially females, so in that case it's right up your alley!

Thank you so much for the link to that video; I told him about it and we are both planning on watching it. You've always got a rabbit up your sleeve, no matter what the subject is! Amazing   You know more about BPD than most of the books I've been reading, and I always learn so much from your posts... . Thanks!

I mentioned way up this thread somewhere that the Neurofeedback Therapist for my son was going to upgrade her equipment to the newest hardware and software available for the Cignet Program. Well, she just got it all in and set up, and yesterday (his last appointment) was the first time she used it, and he was her first patient she used it on. I asked him if it felt any different, and he thought about it and said "I actually do think so... . " I really don't know if he would know that so fast, but he has another appointment tomorrow (Friday; he usually goes on Saturdays, but this weekend we are busy) and he's going to pay more attention to how it all is working and he'll let me know if it really does feel "different."

All I know about the upgraded system is that the frequencies are lower (I believe) and more efficient, and that it is supposed to work better and he should see his recovery (and especially with his drug addiction weaknesses) go at an enhanced clip. He is still clean and sober (almost 5 months now!), and he isn't in any trouble with it, but he is still leery of going out in the "cold, cruel world" because of all the triggers and his fears of relapse. He's a good guy, and is the most verbal, creative, thoughtful and helpful than he's been in years, but is still cautious and lacks self-esteem. His NF Therapist knows all this and is doing what she can to help him with all of that. He's a lucky guy... .  

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« Reply #57 on: July 26, 2013, 02:27:32 AM »

RR: aw shucks, (she says stabbing toe into the ground and putting finger in corner of mouth  ) thanks   . (turns away big smile on face, skips down the road, arms swinging  )

Tell me, how much longer does she think? Any idea?

Vivek    
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« Reply #58 on: July 26, 2013, 02:35:24 PM »

Tell me, how much longer does she think? Any idea?

Vivek ... . First of all, glad I made you so happy    And second, to answer your question, we do have a general idea of how much longer he will be in NFT. Today made his 63rd "Wake-State" Session, and we are going for at least 80 of those; they are being geared to his ADD/Anxiety/BPD symptoms and behaviors. Since he has so many DXes, 80 may do it, and in the end he may feel that he will need more of those Sessions.

To deal with the drug addiction issues, in order to prevent a relapse, she is suggesting at least 30 ":)eep State" Sessions. As of today, he has had 14 of those. So, there are at least 16 more to go of Deep States, and 17 more to go of Wake States. My son, the Therapist, and my Husband & I are all OK about this; he is doing so well that we don't want to stop until he's ready. We are leaving his duration up to him after the prescribed sessions; he is being realistic and open-minded and eager to be in "remission" (his words), and we don't want to discourage him.

He found out more about the new, upgraded equipment that she is now using with him. He said that the frequencies are more "fine-tuned" with lower low frequencies and higher high frequencies, and more options in between. The new program has some more options with the games (which he never did before; he moved from images with sounds to movies--the latest being "'Fly Away Home", and today he took advantage of a brand new one that came with the new upgrade: a painting program where he did artwork using a mouse. He truly loved it (he is, after all, an artist), and is planning on doing it more in the future. He likes the new upgrade, and is hoping it is fine-tuned enough to his needs where his recovery will progress faster.

He and I had a conversation last night about the differences between Men with BPD and other mental illnesses, and Women with these problems. He told me that in his experience in the first 2 "normal" Rehabs and again in the most recent stay at the Dual Diagnosis Center (all of which were co-ed), and also in his outside life with the crew of misfits he used to hang out with, he thinks that BPD, etc. effect men and women differently. Now, this is just my son's opinions, and neither of us are in the medical profession, etc., so it is not gospel truth or anything but just his opinion... .

My son believes that Men with BPD and other mental health issues tend to minimize the traumas, abuse, victimization, etc. that they have been through. Even with bona fide real past abuses, the men he's met in his BPD travels (in the outside world and Rehab world) don't want to be thought of as "victims" in any way; they will minimize the beatings they received from their parents, the bullying in school, the mental or emotional abuses they received. They shrug them off as "no big deal; just a part of life... . It's just the way life is for me; it's just how the past was." Not wanting the "victim" label, they would rather be thought of as "bada$$es" to explain the troubles they've gotten into as a result of their pasts and BPD, etc.

The Women he's observed with these problems (and again, it's just his observations), seemed to him to be more willing to embrace the "victim" label to explain away their problems and troubles and bad behavior. He said that the women will tell their stories with themselves being victimized over and over again; he's sure that most of them were victimized, but he said that some had turned things into victimization, in order to try to justify or understand why they are the way they are, or do what they do. He said he always felt that the Women couldn't explain their problems without seeing themselves as victims; that having mental health problems seemed hard for them to admit to. They'd rather blame their troubles on parents or caregivers, teachers, siblings, etc. rather than accept that they had some sort of mental health issue. Where the Men seemed to minimize their own victimization, the Women seemed to maximize it.

This is just food for thought; whether it helps you to understand your daughter or not, I don't know... . But it does explain my son to me. His lack of blame for anyone, but his own "stupidity, laziness, craziness, badness" for his troubles has always amazed me... . but, like the Women, he also did not want to admit to a mental health issue; he'd rather have been thought of as a "bada$$" than mentally deficient. Now, reading all the stories here on this site, I do know that there are exceptions to this; plenty of Men seem to blame their parents, wives, etc. and plenty of Women seem to want to understand their mental health issues and are willing to believe they have a problem. But my son says this is what his experience has been... .

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« Reply #59 on: July 26, 2013, 05:47:47 PM »

RR that's so interesting. And logical when you think about it... . but of course, I never had looked at it that way.

Gender stereotyping is a powerful thing isn't it? Women as 'victims' is a reflection of their relative powerlessness in society. Men as 'badass' is a reflection of their role as protectors - even though they are often the perpetrators of violence. It is a complex world we live in. 

I am glad you have a sense of where you are going with the length of time involved. I am glad that this is seen as 'remission' not yet recovery.

It is truly like a miracle to read about and I shake my head in disbelief and wonder. I am so happy for you all.

Thanks too for the heads up on the software involved. These sort of details are important I think for those of us able to investigate neurofeedback.

Cheers,

Vivek  
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« Reply #60 on: July 27, 2013, 01:14:59 PM »

He is still clean and sober (almost 5 months now!), and he isn't in any trouble with it, but he is still leery of going out in the "cold, cruel world" because of all the triggers and his fears of relapse. He's a good guy, and is the most verbal, creative, thoughtful and helpful than he's been in years, but is still cautious and lacks self-esteem. His NF Therapist knows all this and is doing what she can to help him with all of that. He's a lucky guy... .  

Rapt Reader - is there a plan or possibility for your DS to find support in a peer group to help build his confidence and to have support in stepping out into the world. Kind of like access the 'therapeutic friends' or a mentor relationship?

My DD and I have talked about this. Her lonliness, which often shows up as boredome, is a strong factor in her getting back with toxic friends that destablilize her. This is really really evident to me with her recent jail stay. She was in a dorm style pod with required class participation. It is a transistion group mostly from what I can gather. And DD has shared how feels better about herself - that she can make friends - the others in the living skills classes are also wanting to make their lives better. She is talking about the community programs that are similar that she has available to her. Before the recent week in jail she did the intake at a mental health recovery program. THey can offer her similar classes. I can see motivation - if she can get connected right away.

qcr
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« Reply #61 on: August 05, 2013, 01:38:39 PM »

Thank you, qcarolr, for your insights... . After reading it, I contacted his Therapists and we are starting to work on it. I'd love for him to be involved with a DBT Group, but there may not be one locally available, and if it is, it may be hard for his Mecicaid/Insurance to cover it (something having to do with his Psych being someone not a part of the Group in town that is/was available). We're all working on it... .   Doing the right thing (click to insert in post)

We had another little insight on Saturday after his Neurofeedback session. Now that he's doing the upgraded Cignet Program, he felt really good after the first one, but started with some sort of agitation following the 2nd (2 Saturdays ago). He seemed "out of sorts" that weekend, and told me "for some reason I feel angry, and I've been separating myself from you and Dad so as not to cause an argument... . " when I asked him if he was depressed or something (since we really hadn't talked to him much over that time).

He had another session last Wednesday, and we talked to his Neurofeedback Therapist about it all that day; she told him if that ever happened again that he should call her for a free "tune-up" since right now the new system has her using a different frequency than before (she'd continued with the one he thought had worked well, and when the same frequency had caused him agitation after the next session she wouldn't have known since we never contacted her). So she adjusted the frequency (higher, I think) and he felt better after last Wednesday and this past Saturday, and is doing really well now.

On Saturday she reminded me that though he'd had a little "setback" with the agitation that past weekend, we had to look at it also as a step forward: He noticed the anger/agitation, and instead of just impulsively arguing all weekend with his Dad and me, he processed the emotion and figured out that detaching himself from the emotion and us would be in his and our best interests. TLCs: Tiny Little Changes that I had missed myself, but now realize mean a lot... .   Smiling (click to insert in post)
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« Reply #62 on: August 14, 2013, 03:14:02 PM »

About 3.5 years ago my son, like many people who are/were heroin addicts, was diagnosed with Hepatitis C (without Hepatic Coma NOS... . but I don't exactly know what that means). A very insidious affliction that needs specialized treatment. When he was first diagnosed he had to go to a Gastroenterologist every so many months for a course of immunizations against the Hepatitis B infection, and after 1 year (I think) he was finished with those courses. Then, the next step was that he had to stay free of opiates for 6 months so that he could start more courses of treatment with Interferon. I'm not sure how that is administered (injections?), but running in the circles of users that my son was involved with, he heard horror stories about those treatments--apparently they are similar to chemotherapy with similar side effects.

He was scared to death of that next Interferon step, and I noticed a pattern for the last 3 years or so: every time my son, whether on his own or with the help of a rehab program, was clean and sober for 3 months or so, he relapsed. He never made it anywhere near the 6 months he needed in order to go on to the Gastroenterologist for the next phase of treatment with Interferon. At first I attributed it to the fact that he was an addict, and recovering from that was hard and he just couldn't do it. Which is why he ended up in a second (normal) rehab, and now just this past March-April 2013 in the Dual Diagnosis Program that changed everything for him. Lately we've talked about it, and he has admitted to me that one of the reasons he would relapse before the 6 month mark in the last 3 years was because it was a way to put off getting the Interferon treatments. His Dr., OP T & Psych were not happy with him when this happened, but never put 2 and 2 together to figure out that his relapsing had anything (in whatever small or large a way) to do with his fear of Interferon.

This week has been another turning point for my son. On Monday he had his OP appointment, and the Therapist worked with him to start preparing for taking the Interferon treatment. On Tuesday he had an appointment with his Psych, who also worked with him about it. His Psych gave him instructions on which additional testing he wanted done (some kind of viral count?) later on that afternoon when he saw his Dr. for his monthly check-up and blood testing. His Dr. then worked on preparing him for the Interferon treatment, and had my son agree for her to call the Gastroenterologist for the first appointment for these treatments. Since my son has now been clean and sober for 5.5 months, and the appointment takes about 2 weeks lead time to set up, he will be the required 6 months sober by the time he will go. He told me all about this after his Dr. appointment... . He was nervous about it, but kept a stiff upper lip about it.

Today, after his Neurofeedback sessions, we had a chance to chat. He was pretty upbeat (I'm sure the NF T is also working with him to get him prepared for this new treatment), and told me that he is happy he will be continuing the NF sessions while undergoing the Interferon treatments. I said to him: "It must make you proud that you've made it this far... . You have really made a breakthrough, here; it must feel really good!" He sorta grinned and said: "Yeah... . I am proud of myself... . "

I'd remembered that when validating him, I had to keep myself out of it. But, when I didn't get any pushback from saying that (in the past even saying that he must be proud of himself, when it had to do with his sobriety, would result in him rolling his eyes, or even just ignoring me), I said: "I wanted to say that I am proud of you accomplishing this, but I didn't because you don't like that" and I smiled.

He replied: "You're right... . but it's not because I don't want to know that you are proud of me; it just makes me nervous that I will disappoint you in the end." And he was smiling and calm, and I could tell that he wasn't afraid of that right now... . It has been a very good week so far, and even he admits he's had a breakthrough... .


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« Reply #63 on: August 14, 2013, 07:03:37 PM »

so, so good to hear that story   I am proud of you RR 

I am very familiar with Hep C. I am also familiar with the old interferon treatment. I also know what can go wrong if it doesn't work. My dh has Hep C and a liver transplant and we are so lucky.

In some ways it is good that your ds has avoided the treatment, she says wryly smiling... . in recent years there have been big improvements in the treatment. It used to be just interferon injected daily and the effects weren't great - but not as bad as the horror stories you ds has obviously heard. Now it is probably interferon with pegolated ribovarin or a version of that. I think the number of times it needs to be injected has also improved. The side effects have been reduced, the effectiveness of the treatment is significantly improved.

I expect your ds had built up this image that wouldn't fit the reality today. Tell him for me, if appropriate, that there's a woman on the other side of the world holding his hand for him throughout the process. He can skip through this 

cheers,

Vivek  
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« Reply #64 on: August 14, 2013, 08:40:58 PM »

Thanks for the encouragement, Vivek   

I have read that the treatment has gotten better and a bit easier, but he's never really believed me (the stories he's heard were apparently graphic and horrifying to him). I've mentioned that we can research it, if he wants to, and that's something he may be interested in doing. I'm so very proud of how he is dealing with this... . He may not have a job, a car, any money, a girl, etc. But, he's here with us, almost-happily living his life again--a part of the family, helping out, watching a TV movie here or there with us, eating meals with us (and sometimes even helping me cook it or cooking it himself), and starting to do "normal" life things that don't in any way involve anything harmful to himself or others.

Like Valerie Porr says in her book "Overcoming Borderline Personality Disorder": Don't expect things to be like you expected them to be; accept them as they are and be happy for all the tiny little changes... . Of course, that's paraphrased, but that is what I got from it, and that is what I hold on to. The life I expected and wanted for him is just not there; if he ever gets that far: Who knows? For now, he's taking it one step at a time and doing no harm. What more, really, can I expect from him? After all he's been through... .

Thanks for your knowledge; I'll pass it on~~he knows about Vivek  from the other side of the world, and is rooting for you and your daughter... . I'm sure he'd be happy to grab that hand of yours for support... .
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« Reply #65 on: August 14, 2013, 11:27:12 PM »

that is soo sweet. Pls tell your dds I really appreciate his kind thoughts. Darned if I don't feel them across the ether either!

One of the most insidious effects of Hep C is fatigue. It's not the same for everyone, but nonetheless Hep C is a debilitating condition. He may be surprised at how good he feels when the treatment is successful. It may just give him a whole new burst of energy... . goodness knows where that could lead 

Little steps, baby steps, two steps forward and one back ... . even giant leaps from time to time.
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« Reply #66 on: August 15, 2013, 12:25:57 AM »

RR I so appreciate the hopefulness your story gives me. DD27 continues to be able to manage beinging in our home, relating in positive ways with gd8, and we are able to talk about the why's of her neediness for my involvment with her. This helps me with finding what is supportive vs. what is enabling. She actually asked today what she should do next. She wants to get a job at a thrift store. She loves gathering stuff - nick nacks and clothing etc. She started this dumpster diving when homeless, then continuing this and filling my home with so much stuff. I am realizing that instead of veiwing this a chaos and clutter, I need to respect what this gives her. A REAL GOAL THAT IS REACHABLE.

I am moving more of this story to my other thread, to not hijack yours. I am rooting for your ds to keep on this path of recovery. He is lucky to have you there to encourge him.

qcr

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« Reply #67 on: August 15, 2013, 05:50:37 PM »

Thanks, qcarolr~~I'm really glad you are starting to feel hope, and happy to help with that 

I think you might be on to something about your daughter's motivations while hoarding; that's a good insight, and at least helps you to tolerate her actions better. And, the fact that she is not causing strife at home, and is doing well with her own daughter... . You know, that's even bigger than a "tiny little change" for her; it's a GREAT change and helps the whole family! Let's hope and pray she keeps taking those baby (and sometimes BIG!) steps forward... . It's the best we all as parents of pwBPD can hope for, and sometimes it's enough, right? They do teach us to be more appreciative of the little things, don't they?

Good luck and Godspeed to you and your whole family... .

Thanks to you, too, Vivek ~~I told my son what you said about the fatigue (which he does have almost every day) getting better after treatment... . He was surprised by that, and was glad to hear it. He's still scared, though, about the future treatment plan; I'm trying to keep him optimistic and open-minded to its not being as bad as he fears. He doesn't believe me so much as he's willing to believe you    Good luck and Godspeed to you and your whole family, also... .
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« Reply #68 on: August 15, 2013, 08:28:19 PM »

raptreader,

Your post is so inspiring.  I am happy for you that your ds is progressing forward.  Your post gives us hope.  Thanks for sharing!

peaceplease
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« Reply #69 on: August 15, 2013, 08:51:35 PM »

I wish that we had a provider that used neurofeedback therapy that was covered by insurance.  I see that we have one in neighboring state that is 57 miles from us.  I would be willing to travel that distance, but I am quite certain that my dd's insurance would not cover in another state.  I wouldn't even mind trying it.  I highly suspect that I have adult ADD, but am not willing to take any of the meds.  Heck, my whole family could benefit from it.  My dh, and ds are addicts as well as my dd.

Hopefully, more clinicians will be using this therapy.  It sounds promising!
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« Reply #70 on: August 15, 2013, 09:25:53 PM »

Hi, peaceplease  

I agree that Insurance should cover it (it doesn't, and my son goes 15 minutes down the road to see the NF T!), and I wish that there was more research on it... . I myself went for 7 sessions for my TMJ (for grinding my teeth at night and clenching my jaw during the day), and now I don't have to go anymore. I've stopped the grinding at night, and in the daytime every now and then--and not often--I will notice that I will begin to clench, but right away I notice it (I never did before) and stop. My jaw hasn't been this pain-free for so many years that I don't even remember the last time it felt this good.

I can't vouch for anyone else, but for myself and my son, we've been satisfied with the results. I know other people who have experience with it being used for just ADD/ADHD (my niece, my friend's son, my sister) who are satisfied, and another niece who found relief for Anxiety and 2 friends who were happy with the results for migraines. All anecdotal, I know... . My son's DXs are so varied and so many; I'm not sure what the total outcome will be. Will he ever live a normal life like the other people I know above, who are doing just that? I don't know... . But he's better than he's ever been in the past and for now I'll be happy with that.

Thanks for stopping by; it was nice to see you  
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« Reply #71 on: August 23, 2013, 02:35:07 PM »

I have a couple updates... .

My son's blood work and abdominal ultrasound have been done, and his appointment for his first visit with the Gastroenterologist is set for almost 2 weeks away. He talked to that office himself, made the appointment, and is dealing with it so well that I'm really surprised. He's OK, and this is going to happen after more than 3 years of trying to get to this point! A real milestone... .

Also, I've told you that he is an artist: draws, paints, writes lyrics, composes music on a guitar. He also is a gifted writer, and I've been encouraging him to write something ever since he's been back from the DD Center in the beginning of April. His self-esteem and self-confidence has been such that he wouldn't even start something art/writing related; he was afraid it wouldn't be "perfect" or that he would never finish. Sadly, that is his Modus Operandi, and he couldn't get to the point of entry, art-wise.

For the last month or so I've been talking about this with his Neurofeedback T and she's been working with him on it. For at least the last month of treatments every Wednesday and Saturday, she's been putting this as a priority, along with all of his other needs relating to all of his DXs, behaviors, symptoms. We knew it would be a long slog, but I've always felt that if he could just get into his "artist mode" his feelings about himself would improve, thus improving his recovery process.

Well, today he was talking to my Mom on the phone (another little hurdle jumped), and she must've asked him about his artwork, and he chatted with her for about 5 minutes. He told her that he's been drawing here and there, and that he's working on a story. He's been writing off and on, sometimes through the night, for the last few days. It's a great story, and if he ever finishes it (he's still realistic!), it will be the best thing he's ever written~~he thinks it could be important... .

I'm pretty psyched, but I can't let him know; he gave me the phone when he was done and just grinned. I am thrilled beyond belief, but have to be cool about it. I know from experience that if I overreact (which means just reacting happily, in his world), he will freeze up with fear of failure and then stop writing and drawing. I just smiled and nodded my head in approval as I took the phone, and chatted with my Mom. That's all the validation he can handle at this time... . And it's OK with me. 
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« Reply #72 on: August 23, 2013, 07:00:05 PM »

I long for the day when I can express my emotions freely and with gusto, without repercussions ... . the positive ones that is 

Good to hear he is returning to what is important to him eh? Nice to be able to 'chat' with granma for 5 mins too  Smiling (click to insert in post)

Very good to hear the Gastro appts are in hand. Have you asked him if he wants you to come to the session where he gets 'kitted up'? He may appreciate company for that one... . just a little moral support... .

I was thinking of him last week and was this is what I was thinking. If you can see the stars at night where you are (ie not in a very big city), then could you go out into the night sky, look up and see all those stars. Then instead of looking up, can you imagine being up there looking down into your own backyard where you are? Do you get a sense of the different perspective? Two things I would want for your ds to learn from this. 1) we are but specks in the universe and these problems that take on such immensity in our minds are rather tiny really. 2) if you cast your star eyes over the whole earth, you can imagine me, there too, looking up ... . and all the positive energy from all over the earth sending out their own little vibrations - just people doing good things for each other, loving each other. It's a good world. And that positive energy is for us to tap into anytime.

We're nearly out of time for this thread now RR... . time for the next phase perhaps?

best,

Vivek      
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« Reply #73 on: August 23, 2013, 09:21:49 PM »

Yes... . It will be nice to someday be able to express my happiness and excitement with his progress, when I see the TLCs that show him putting one foot in front of the other, without worrying about it causing him to put the brakes on. I so know what you mean.

And I will be going with him to his first appointment, and probably the rest, too. It's about 45 minutes away, in a "big city" and we'll make a day of it each time. We are both looking forward to it, as a way of taking lemons and making lemonade... .

We live in the country~~big sky everywhere and lots of stars when there are no clouds... . We all like to lay out under the stars on a warm summer night, on the cool grass. I'll remember to think of it the opposite way; what wonderful poetry you've written! I'll be sure to share it with my son; we'll look at the stars and think of you and your good wishes from the other side of the world.

And, yes... . I know that the limit is pretty much up. I actually knew it when I posted today, and wanted to end this thread on a very happy note, and when I heard my son talking to my Mom about his artistic endeavors, I thought "Yes... . this is good... . "

I'll continue his story on another thread... . Thanks to you, and everyone else who has been reading it 
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« Reply #74 on: August 23, 2013, 09:33:31 PM »

Staff only

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