[Mariel]

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.

[Lynn]

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

[Blessings2You]

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.

[kicker]

Mariel!!!!!!

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

[Sparky10]

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.

[SallyC]

(((((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?

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.

[Mariel]

Originally Posted by Sparky10

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.

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

[ginnie]

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

[tkrik]

Mariel - I'm so sorry you are having to face this decision. It's a tough one to make. One of my neighbors recently moved in to an assisted living type facility. She's 91. She absolutely loves it! It was the right decision for her. She feels secure knowing that there are others around to help her when she needs in and in case of an emergency. She also likes the activities that they have there as well as the library. Oh and the food. She raves about the delicious meals they have. (You get 15 meals a month that's included in your rent.) For her, it turned out to be a great move and I feel more comfortable knowing she's there as does her family.

There is lots of help out there for people in your situation. It's finding the right agency and such for the extra help.

I will keep you in my prayers as you make this decision and hope that all works out for you.