New to Forum - degenerative PCS
 

Hello to all - I'm so glad I found this forum. I am the wife of a 47 year old male with a history of multiple TBIs. Fortunately, he always seemed to go on to full functioning without any long-term effects. Made it through college and had a very successful career until a few years ago. Only long-term effect seems to have been occasional problems with impulse control (would pick fights for no reason).

His most recent concussion was in a ski collision about 5 years ago at the age of 42. Again, he had no immediate issues - no cognitive impairment, headaches or anything.

Then, out of the blue sky, he started having extreme behavioral and cognitive symptoms in 2008. First thought it was purely psychological, but then it became clear that there were severe cognitive deficits in play. Tasks that he used to relish and do very well, he now avoided completely. He used to manage our finances and maintain our house (including doing all the repairs himself). He used to be very motivated.

He has done quite well with the meds - Lamitcal and Effexor have helped control moods wonderfully and to the outside world he appears on all counts to be "well."

However, he has not worked a steady job in over 10 years, and I am supporting our family (including our 2 young children). We have visited neurologists, neuropsychologists, and even ruled out other medical conditions just to be safe (everything from thyroid issues to sleep apnea - all negative). Even the MRI was negative. He's tried cognitive rehabilitation several times and it was a complete failure.

His executive function and sense of urgency with tasks seems to be completely gone. Also, it had not occurred to us to apply for disability benefits - been too busy trying to get him medical help.

I feel as though I have exhausted all of the specialists and am beside myself. I want so much to help him and at the same time my frustration level is becoming intolerable. His mood is finally good again, but I still feel like he is no longer the person he used to be. It's really weird.

Any advice as well as referrals to neurologists in the NY/NJ area would be great. (P.S. - we've already seen some really nice doctors, but who unfortunately were not able to help us - Gary Alweiss (neurologist - Englewood NJ), Nick Scarmeas (Neurologist - memory disorders - New York, NY - Columbia), Joel Morgan (neuropsychologist - NJ), etc.)

Finally, anyone have familiarity with the work of Douglas H. Smith in Philadelphia? I hear that he's onto something with accumulation of proteins after axonal injury.

Thank you again for listening!!

--Losing hope in NJ

beacon,

I am so sorry to hear of you and your husbands struggles. It reminds me of what my wife went through about ten years ago.

First, I would find the best Social Security Disability attorney you can find. Your husband qualified ten years ago. Since he has not worked in ten years, his income history will be poor. You need an attorney who will go to bat for you due to your failure to apply long ago.

I waited to apply until my struggling to work with my wife's help just got to be too much. By then, my income history had dropped so much that my SSDI payment was decreased by $150 per month.

Regarding your husbands condition, Dr Robert Cantu in Concord, Mass has experience with the delayed onset of PCS. Your husband sounds like the many retired football players whose PCS hits them in their early 40's.

Dr Julian Bailes in West Virginia is also an expert. Maybe their offices can refer you to someone more local.

You also need to find a good TBI support group. You need the support of others who are living with this same situation.

You also need to continue working with your husband to discover work-arounds and accommodations to allow him to be more productive. I can be explosive and know how to recognize the signs and hopefully turn and walk away. By now, I bet you are quite good at recognizing when his eyes start to show his struggles.

My heart goes out to you because I know what it is like to lose your spouse and help-mate and income earner. I have watched it as my wife has found support from others. The changes in personal relationships is difficult.

I have had to learn a lot of relational disciplines because the natural behaviors from the heart just do not flow. I see the effort my wife puts out and know I need to be disciplined to respond. Sometimes, I feel like a fraud since my responses are usually due to discipline rather than my heart. But, it is what works to keep the relationship working. I have an amazing wife just like your husband has.

The spousal relationship when dealing with mTBI and TBI is unique and more difficult than a parent to child relationship. You seriously need to connect with another wife or two whose is/has lived in this situation. I'll start a thread and see if any wives respond.

Have you helped your husband with nutrition? There are many post on this forum discussing nutrition and vitamin and other supplements. I can not function without my supplements. The injured brain is a cesspool of toxins from the damage and the cascade effect of the chemical imbalances. Search nutrition or vitamin on this forum.

Download and read the TBI Survival Guide at www.tbiguide.com There are some other great online resources, too.

Hope this helps to the time being. Stay in touch. There are many experienced people here.

My best to you two.

Hello Mark -

Thanks so much for the reply. I will definitely take your advice to heart.

As for nutrition, yes, I've actually been on the ball with this one. Put him on a regiment of multivitamins and supplements about three months ago (the ones that include stuff like folate, b12, etc.), as well as magnesium, and omega 3 fish oil that is high in EPA & DHA with a 2:1 ratio. His memory actually has improved somewhat from it, but the executive function is the big problem still.

I will definitely look into the doctors that you mention below. My concern with a support group is that most of what I see are people dealing with the immediate after effects of TBI and are still in the acute stage, are still in rehab, etc. as opposed to our situation, which is many years after the fact.

If you are able to locate a wife (wives) in the forum who are dealing with similar situations, I would be most grateful!!

One of the difficult issues for me is to continue to remind myself that he has this impairment - because it is so easy for me to play into some of his behavior or get mad at him because he is no longer motivated to do anything remotely productive. But I am happy that he is finally out of his depression and able to enjoy his old hobbies again. Even that was gone for a while.

Thank you again and please keep me posted on anything you find that might help.

--Beacon

Beacon,

Your comment about support groups is odd to me. The support group we participate in is mostly subjects who are many years post injury. We have some who are twenty to thirty years post injury.

Those close in time to the injury are often too busy to participate in support group. It may be different in your locale. Check with your Brain Injury Association of America affiliate. They often have referrals to support groups. With the population density in your area, I would suspect that you have a number of support groups within your locale.

I am the only PCS participant but my struggles are not a lot different than many of those with more severe injuries except I do not have any of the physical struggles. Most have been in car wrecks or had strokes or other severe injury to their brains. Two were shot in the head. Many were comatose for extended periods.

Check this link http://www.bianj.org/support-groups

Don't be afraid to just attend and be a fly on the wall. There is lots to learn from just watching. You may need to check a few out to find one that fits your need. Most of the facilitators will be able to tell you about the group.

Post to the new thread I started to see if others chime in.

My best to you.

carers support group
 

hi welcome headway run a small group for carers in the uk I have had personalty changes so understand you need support as a partner check out the sticky,s at the top of the page if you can encourage your DH to join this site it may help him it would be good to have more wives husbands ect on the board but your issues are copping with ABI person

we will help of course , the carers board here at NT may also be of help

best wishes

Mark & Vini -

WOW - thanks for the information and encouragement. I think I needed that.

Thanks for helping me to overcome my being hesitant to reach out.

I'll be sure to follow up.