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.

Aaawww geez Mariel

I don't know what to say, other than I am sorry, and sad that you are feeling like this, and I wish there was some magic fix for you.

I hope that things work out ok, and that things are not as bad as you are expecting.

Hugs

Lyn

I'm so sorry that you find yourself in this situation, and I'll continue to lift you in prayer. I must say that I was startled to see you mention your age--I don't know why, but from reading your posts, I pictured you in your 40's or 50's! I obviously haven't read all of your posts, or else I didn't put two and two together!

I assume you've been in contact with your area Agency on Agency? In my area, they are very helpful about matching people with solutions.

Mariel!!!!!!

Like B2Y I always pictured you as in your 50-60s.

Aw, ((((Mariel))))! Have you looked at 211.org? Lots of info, maybe you'll find some assistance there.

Please don't give up. It might be temporary ~ you know how weird MS is.

(((((Mariel))))) I feel it coming too, dearone. I hate the thought of getting worse and losing my independence. DD say's I will never have to go to a nursing home, but what is she gonna do with me and her 4 kids?:eek:

I hope you find a suitable home to live comfortably in, that is not too expensive and has the care there when you need it.

Take care, we are here for you.:hug:

Mariel, would a few hours a week of home care help? You could contact "Home Instead Senior Care" and see what options are available.

Hi Mariel
 

Sorry things are difficult for you. Life is rather hard with no support. In some ways boredom, and being alone can be alievated with assisted living. My friends mom at 83 decided to do this, and she found new friends, and also had help with disability. Maybe this would help you not hurt you. You can make friends right here on Neuro Talk too. I am 60 F, and disabled. I came here seeking support though some hard times, and found so many people that I never want to loose as friends. I will keep you in my thoughts and prayer. I will be here if you ever want to talk too. Are you able to read? amd emjoy that kind of thing? ginnie:hug:

I will look at 211.org. Have not heard of it. thanks.

Blessings to You, I don't need home care because I do my housework except for the floor care done by the handyman, who comes every second week and is very helpful. What I really may need is someone in the house to see if I fall down and can't get up. I tried one of those things one wears around the neck, and it went off twice while it was not near me, and the police came twice. Up to now I've been walking well. Today I'm having much better balance and went to church and the co-op to buy groceries, and did just fine. My eyes are also better. It's just that I'm thinking of the future without family support. My mother lived to 97 and died alone on the floor because she would not go to a "home". But I think she lived so long because she did it "her way". It's a good question whether such long life with disability is preferable--she was nearly blind with macular and could not hear well enough to let me communicate without shouting. I am so sorry she died that way...I could not even live in the same town because the 2000 forest fire had complicated entirely our living economics--just ruined our funds, basically. I offered to live with her (husband and I) and she would not have it.

Ginnie, I do read, am reading this forum. I had trouble reading it after both forest fire episodes we had in the two last Junes. Forest fire smoke really sets my vision back, but I've recovered; it may be that Lutein Eyes helps many eye problems, and I've taken it for 15 years because my parents had Macular Degeneration. I fear we will have yearly smoke seasons now that drought is the rule rather than the exception. Smoke causes my eyes to go into "seizures" for months afterwards.

((((Sally)))) hugs back to you!

And thanks to all who sent comforting words. I appreciate them VERY MUCH. Wish I knew how to put a nice stickie here.