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Cognition v. Physical Disability

Aug 22, 2012 - 2 comments
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tysabri



On another one of my active forums, there were 25-pgs of complaints over cognition loss.  While I fully and whole-heartily understand and sympathize with the loss of cognitive abilities, I could not believe my eyes when I began reading how people were wishing for physical disability over cognitive!  TWENTY FIVE PAGES.

I'm keeping my response to that thread in this journal as baseline and reminder for when I start to feel down or "in the blues" about my constant and declining cognitive abilities.  Sometimes it's easier to be the outsider looking in when you aren't in the "blues" moment and I know I will need this reminder as a pick me up since I am no longer on my wonder drug.

FORUM RESPONSE **Start*

Tysabri helped me get my memory back, my articulation, my being able to carry on a lengthy conversation without asking for help to finish it or find my words.

...I'm only 34!  This shouldn't be happening to me.  My 78 yr old grandma says, that's just life dear, listen to me -- I'm doing it too!  WTF?  Of course you're doing it... I'm only 34, this should not be happening to me!

I had to quit my higher pressure job in project management because I couldn't recall important information in meetings.  I couldn't carry on intelligent conversations while playing office politics.  I looked foolish and appeared uneducated where I used to dazzle and impress.

When I began Tysabri, my ability to speak improved.  My confidence regained.  I felt super-human and ready to be myself and live in my old self world again.  Then, I tested JCV + on my 12th infusion and have decided to not play russian rulette.  Death is not the only concern with PML.  There is complete bed ridden existence requiring assistance with dressing, eating, moving - for the rest of one's life.  I chose not to risk that and would rather have loss of memory and be able to independently put on my own underwear than sentence my husband to a lifetime of bathing and feeding me.

It truly saddens me to read some of you wish one disability over loss of cognition.  I understand your grief over losing our marbles. It promotes depression and loss of confidence, a loss of self worth.  I get it.  But so does physical disability.  I do not chose one over the other.  Neither one is more desirable over the other.

I decided to keep working, but a much less skilled job.  People still look at me funny when I can't complete my sentences, and I still feel like a total dumb arse, but at the end of the day -- I'm coming home feeling like I contributed something to my household for my DH who is working hard to help make my quality of life as best as it can be.  I want to do all I can while I can and not friggen complain about it.

I HATE that I can't find my words, I HATE that I'm not as confident in ability to outwit the next guy in a fast speaking come-back, I HATE that I can't recall a funny story that my husband recalls we did just last week... it does suck... but I'll tell you that I am thankful for all the symptoms I don't have and the things I still am able to do today while I can to enjoy my day :)

I have so much warmth and sympathy for all my MS friends... I just wish I knew some of you in the real world.

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4461995_tn?1357958708
by Antalya, Jan 06, 2013
What a wonderful letter.  

My thoughts exactly.  I'm just getting my friends/family "trained" to wait for me to finish a thought.  Or find a word (if I can find it I have to spell it in my head before saying it!)   It's frustrating and annoying and embarrasing to ask "Oh.  I SAW that movie?  What was it about?"  Then, may remember some - or not. But if I enjoyed it, I can enjoy it again!

I have decided that I'm staying out of the work force.  I "retired" when I was 40 -  14 years ago.  Between fatigue, eyes getting ""weird" with fluorescent lights, memory loss and speech, I'm really not comfortable attempting something new.  Always busy tho!

Oh. With the exception of the last week that I have been home dealing with a bladder infection and? kidney infection - OR sciatica.  ?  Can't drive w/ spastic foot/back.  So am home.

With my papers and calendars and iPhone and and and to try to stay organized!

4461995_tn?1357958708
by Antalya, Jan 07, 2013
I have a thought.............

Wouldn't it be wonderful GREAT if the chapters had someone who could actually come into your home to get you organized.  The best places to put things - how to manage w/ the least effort both physically and mentally???

I hired an organizer a year ago and it was one of the smartest things I have ever done.  She gave me a break but it was still expensive.  

That would be a fabulous service that would really help if the chapters could do that.

What does anyone think?

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