help for very advanced MS patient

[jimrader]

My wife had her first attack 30 years ago
She is now 63 years old in a reclining wheel chair because she has zero trunk strength and can not sit up
hel legs are totally racked by spasums and has not had any use of them for a decade
she has little use of her arms
her neurologist says she has zero meilin left.

no one seems to talk about the patient
are there any others out there ?

if so are you getting any help from Doctors ?

[Muu]

Hello Jim and welcome to the site. As a person whose father was very incapacitated for many years (not MS)and whose mother was his carer I am aware of how difficult a situation your wife and yourself find yourselves in. I have to say that as someone with mild SPMS I'm not really qualified to give practical advice but I'm sure there are others here who will. You may also want to look at the forum on this site for carers of people with ms if you have not already done so.
muu

[HarryZ]

Jim,

Welcome to the forum!

I can certainly place myself in your shoes. My wife had her first attack 36 years ago and lived a fairly normal life until the MS returned in 1991. Slowly but surely, it progressed to SPMS and then she broke her leg in 2001, further complicating everything. That landed her in a wheel-chair where she has remained.

Today, she still suffers from leg spasms but not nearly as bad as just after breaking her leg. She has decent upper body strength but last fall suffered from pale optic nerve degeneration as well as some loss of hand use.

Marg has been using the alternative medicine Prokarin since 2000. It really has helped several of her MS symptoms and without it I know she would be far worse off today than she is. It sounds like your wife may have a lot of damage to her axons and that would certainly complicate her situation. Not sure that any kind of medication would help her at this point but sometimes it doesn't hurt to try. Prokarin doesn't have any nasty side effects, it's a trans-dermal patch and is painless to use. You usually know within a couple of weeks if it will help or not. I'm not trying to push this medication but don't know of any other suggestions to make at this time. Prokarin requires a doctor's prescription and a compounding pharmacy (licensed for Prokarin) to make it up.

If you wish any further info, you can privately e-mail me.

Harry

[TwistedHelix]

Hi Jim,

I'm glad you found this site: it certainly sounds as if you and your wife are having a tough time of things, and have had for a long time. My heart goes out to you.

You didn't mention anything about the situation you are living in: I mean, do you get the help and support you both need? With such severe disability the simple daily routines of life become impossible to do without help, and the strain on you must be intolerable. I presume there must be social services where you live, or help agencies of some kind who can assist you, so if you don't get enough help at the moment perhaps finding them in the phone book would be a start.

Local MS Societies and disabled groups can also provide invaluable support and information and, if you can get to their meetings, a place to talk about your experiences and perhaps point you in the direction of a more understanding doctor.

This website might seem to be all about science, research and treatment, but there is plenty of room to talk about every aspect of MS -- the good days, the bad days; your hopes and fears; its impact on your lives and the lives of people around you -- those are things that doctors are often uncomfortable discussing because they are out of their depth, and where talking to people who share your troubles can really help,

Dom.