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Old 09-28-2012, 09:29 PM
Mariel Mariel is offline
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Join Date: Dec 2006
Posts: 724
15 yr Member
Mariel Mariel is offline
Member
 
Join Date: Dec 2006
Posts: 724
15 yr Member
Default I'm overdue for this?

About twenty five years since dx (all my records were lost in the 2000 Los Alamos fire, so I can't give the exact date), I am finally getting to the state I might have been in if I had not fought so hard to be normal.

I am finally having big difficulty with walking, and feeling like I might just fall over forward even when I have not tripped in any way. I am feeling number, and the numbness is further up my calves, not just in my feet. My calves also are in pretty permanent spasm now, and nighttime jerking of my legs and back are not responding to magnesium as they have for decades.

Sometimes, but not always, I'm numb all over.

I don't have a neuro. I did have an MRI with one when my eyes were bad from the smoke last year, but he had no definitive answer for me other than that I must try to lower my platelets, which are high from another disease, Polycythemia Vera. My brain was more ischemic than earlier, i.e., diffuse white matter rather than the big spots I had during the first ten years of my MS experience (after that, no one bothered to give me an MRI until now).

So, I guess that at 81 I am now going to be more disabled, and that's hard when one is alone. I am thinking of trying to find an old folks home, but they are so expensive that they would take most of my monthly income, leaving little to pay for necessities such as Medicare, dental work, toiletries (I need lots and lots of cream for my afflicted skin from Porphyria, and it has to be the good kind of cream, without drug store additives). There is one place in downtown Seattle I might be able to afford as well as tolerate, as they use steam cleaning on the rug, never use soy oil, etc. This place is mostly for people more limited than I am now, but they will get you on Medicaid after two years if you run out of money (which I might not run out if I don't have to do "assisted living". I don't feel up to going to look at the place, but I'll have to when my teeth are finally semi-fixed this coming week.

I have no family support, either financial or emotional. I feel like my old age is what many of you have experienced at earlier ages, being alone and increasingly disabled. I am coaching myself to just accept this, knowing that eventually I will graduate to a better place and see loved ones again, and God.
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"Thanks for this!" says:
ANNagain (09-29-2012), Debbie D (09-30-2012), SallyC (09-29-2012), tkrik (10-02-2012)