Hi Sally,

We try to get out 3-4 times a week with Marg's electric scooter which we can carry at the back of the van. We recently had an electric moving seat installed into the van which allows an easy transfer from the chair/scooter onto this seat which then lifts Marg gently into the middle area of the van.

This past week we have also been trialing a standing frame which, via a harness under her bum, lifts her out of the chair and into a standing position. It's quite the device and allows her into a standing position for as long as she can take it. The initial problem is her blood pressure dropping once she gets standing up so we have to watch that carefully. So far the max amount of time she has been able to stand is about 8 mins. We have another week to decide if we want to purchase this and it's a big decision because the frame is beastly expensive!! But if it works, that's the important thing and we'll buy it.

Take care.

Harry

I've seen that frame thingy you're talking about...cool!

yes, expensive, as everything is that helps us. Will this devise help her to stand on her own eventially?

This disease is really the pitts, isn't it...Bah!!

Love to you Both,

Sally

Hi Sally,

I doubt the device would allow her to stand on her own, even after several months use but with this disease, you just never know.

The main reason we would purchase it would be to improve both her circulation and respiratory systems. A secondary benefit would be the reduction of leg spasms and hopefully the standing would reduce the tone in her legs.

As you likely know, sitting in a wheel-chair all the time is hard on every system and eventually that leads to many problems.

Harry

Hi Harry,

That device sounds really promising. Good luck with your decision.

Was it the broken leg that caused Marg to be in a wheelchair? Or that event precipitated MS events which resulted in her being in the chair? I'm asking because if it's the MS, I am surprised that she wouldn't have chosen at some point just to give the MS drugs a try, on the off chance that they might work. It's easy enough to go off them if they're not working, but I'm just wondering what she had to lose by at least giving them a try?

I think if I was progressing rapidly or accumulating significant disability, I'd be more inclined to try things that I might not have been interested in earlier on. I certainly respect her decision, but I would imagine with increasing disability, it would have been harder and harder to say no to traditional meds. At least it would be for me.

Is your wife online at all? Does she have lots of on or offline support?

Hi Wannabe,

It was breaking the leg that caused the big problems. Marg turned SPMS in 1996 and was sliding slowly until she started on the Prokarin in June, 2000. Very soon after starting that drug, several of her symptoms started to reduce and/or almost go away. At this point, Marg was using a walker for short distance walking and a wheel-chair for long distances. A few months after being on the Prokarin, she actually only used her cane on a few occasions to walk in the house.

Then that break in March 2001. The next day when they put the main cast on her leg, the violent spasms started. Up until that point, she never suffered from spasms. She was told to go off the Prokarin by her doc because of the danger of blood clots with a broken leg. Within 4 days, all of her symptoms started to return (tingling/burning in the leg, numbness in the hands, heat sensitivity, heavy fatigue etc.) She went back on the Prokarin regardless of what the doc said and within a day or so, those symptoms reduced or went away. But not those spasms!!! They plagued her for the next 4 years before they started to reduce after a lot of physio.

In 1996, the CRAB's had only been out for a couple of years and they weren't for SPMS. He neuro told her they would be a waste of time in her situation. And being a nurse, she didn't like those drugs anyway. And the Prokarin was really helping her as well.

Marg used to spend some limited time on the computer but last year she suffered a severe infection in her leg (after getting a small innocent scratch) and that (according to educated guesses by the docs) increased old damage to her optic nerves and a fair amount of lost use of her right hand. Her sight has suffered as a result and she has lost at lot of fine motor movement in the fingers. That makes using the computer almost impossible at this time.

Often I will pose questions to her that readers might ask me on the net. I use her answers to help me reply to these people. Fortunately her cognitive function is still good. On the bad side of that and being a nurse, she knows and sees exactly what is happening to her and that is VERY frustrating for Marg.

Take care.

Harry

Hi everyone. New here, but not new to MS.

Just wanted to chiime in and tell you what a Neuro told me about this:

Basically that since they really had to pick ONE to throw all the money into, that RRMS would be the best since that is where it mostly starts. Yes, that does mean we are SOL but it just makes the most sense. Otherwise if all the $$ was thrown into SPMS, we would never be able to nip it in the bud...

Now, of course he did not say it as lamely as I did... lol

Hi Harry,

This is just the most miserable, fickle, degrading disease ever!! But you are living proof to the question posted here about the worry of a spouse bailing out when the other has MS. I admire you and the love you have for Marg which includes the bad times along with the good!!!

Mine left the first year I was diagnosed, 1990, but with some ingenuity, I've managed alone and now am SPMS. There were other extenuating circumstances involved too.

Have the two of you thought about trying Aimspro? You're in England, right? I believe it's available there on a patient-by-patient basis with a script from your doctor. It's another "alternative" like Procarin -- I'm doing LDN myself. I find it so ironic when the docs are unwilling to give these a try because they haven't gone through the "Trials". Well, we all know what happened in the case of one of those "tried" drugs and the possible side effects from the rest are enough to turn your hair gray right on the spot! Guess it all comes down to $$$$.

Anyway -- God Bless You Both and we'll keep praying for that magic pill.

Hi Judy,

I'll certainly second that description of MS!! Spousal separation/divorce in MS is extremely high. I've heard numbers as high as 85-90%!! Marg and I have certainly been through the ringer for the last 10 years and as the MS slowly progresses, it doesn't become any easier.

We live in London, Ontario, Canada. I've followed the info about Aimspro and everything surrounding it. Not sure it would do Marg any good at this point but that's a mute point since it isn't available over here anyway.

The Prokarin keeps her head above water as far as many of her symptoms go but you have to know that Marg has probably suffered a lot of axonal damage over the years. Unless someone comes up with some miracle kind of treatment in the next few years, I'm afraid that she will have to live with the disease and its progression and whatever it brings. Not a great prospective at the moment but certainly reality.

Take care.

Harry