PPMS - does it always mean the patient will end up bedbound?

mugs · Newbie Joined: Jun 09, 2008 Posts: 3

The more I read about PPMS - and of course seeing the worst examples on the internet -- the more scared I become.

My H was dx in 2000 after having sx since 1994 -- he has PPMS but can still walk with two canes, drives and goes to work -- needs no assistance from me with personal activities of daily living.

Are we looknig at a future ( our supposedly great retirement) with hoyer lifts, bed pans, catheters and eventual nursing home?

Does anyone with PPMS ever retain their mobility, even a little? My H is 59. Sorry to sound so bleak -- I guess I'm depressed.

robbie · Posted: Wed Jul 02, 2008 7:18 pm Post subject:

Hi mugs no one knows how we will end up until were there I guess, your husband deserves allot of credit for carrying on with his life the way he is. It must so hard to do what he does. Really hard for you two, my wife would surely sympathize with you. None of us are alone here that’s all I can offer you.
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I see seven towers
But I only see one way out

nenebird · Getting to Know You... Joined: Mar 29, 2008 Posts: 17

There is lots of hope. I too got dx'd with PPMS. I immediately started the Swank diet. You can look it up on line, but basically its pretty radical. Has it helped? I think so. I have less numbness in my feet which have been numb since 2006.

I take Provigil for the fatigue, which has helped a bunch.

My specialist is recommending Rituxan for slowing progression. I am still pretty ambulatory, just some balance, gait issues and my worst symptoms come out during exercise in heat. Then I drag a leg, can't walk in a straight line etc.

There is another websitge patientslikeme.com that has an MS forum. Very good and very imformative. you can search by type of ms and see what treatments and therapies they use. With so few PPMS people, you want to find out what everyone is doing.

Good luck to you and your Hubby. I hope you find lots of things out. Don't forget to contact the MS Society. If there is a support group near you, go. Mine is populated with mostly RRMS members but there are a couple of PPMS members. It just helps to chat with others. Spouses are always welcome.

DIM · Posted: Wed Jul 02, 2008 11:30 pm Post subject:

I have read a research that says if you are strong after 5 years with no disabilities after 15 years you'll loose more or less 30% of those abilities so don't expect to be bedriden but no one can tell you for sure!
Good luck!

robin50 · Posted: Thu Jul 03, 2008 12:08 am Post subject:

i m also 59 years "young"

and my strict pp-ms startet appr. in 1985....it increased 15 years till 2000 nd STOPPED then!!!

use power chairs and other aids for help, but life is still not bad for me!

Know a meantime large no of other ms sick people...also with ppms, most of them are not SO BAD!

dont loose hope!!!

robin

mugs · Newbie Joined: Jun 09, 2008 Posts: 3

thanks for all the replies.

I feel a bit more hopeful that maybe my husband won't end up a worst case scenario. He was still walking without a cane five years after sx started, so maybe that is a good sign.

I'll continue to post here and if anyone has any other suggestions or answers to my question, please let me know.

You are all a great bunch!

thanks

TwistedHelix · Posted: Thu Jul 03, 2008 8:06 am Post subject:

Hello mugs,
I've had PP MS since about 1986, although looking back I'm sure I had symptoms before then, and I suppose my position represents exactly what most people fear about the future with MS. I can move my left arm and fingers a bit, and my legs will bear my weight for a few seconds, and that's about it. In my darkest hours I remember imagining the future like this, and the cold chill of fear that ran down my spine at the thought – my most basic needs being met by other people; not being able to do the simplest thing for myself; even having an itch that I can't scratch – every possibility seemed terrifying.
Well, the future has arrived and, you know what? You can get through… over the years, bit by bit, you retreat in the face of each defeat: trying to find a new way to do the things that MS says you can't do any more, (for instance, using speech recognition to write this), mourning and accepting the loss of those things that are really out of reach.
BUT! As I've said before: I am sure that my present is NOT your husband's future; understanding of this disease is moving forwards – though not as fast as we'd like – but don't forget that there are many, many diseases of the central nervous system which are being researched and attacked on all fronts and lots of them overlap with MS, sharing some of the same underlying processes. Also the subject of tissue repair is moving forwards apace, which holds the promise of restoring tissue no matter what caused its loss – disease or accident – and raising the possibility of dealing with the damage caused by MS even before the disease itself has been tackled.
The worst case scenario by no means happens to everybody, and it's good to contemplate and face your fears, just never lose sight of the fact that one generation will see the the end of this nightmare – and it might just be this one!
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Dom

Loobie · Posted: Thu Jul 03, 2008 9:41 am Post subject:

Dom,
I know I've told you this before, but you are truly my idol. Whether you realize it or not, you are the man. If I ever get to where you are, I can only hope I handle it with 1/2 the grace that you exhibit. I know I haven't been there actually for any of it and I know you probably have your share of 'I can't take this shit anymore!' horror stories, but that's definitely not how you present. Me here lately on the other hand..... Shocked

.

Sincerely,
Lew
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"When you're in jail, a good friend will be trying to bail you out. A best friend will be in the cell next to you saying, 'Damn, that was fun.'"

carolew · Posted: Thu Jul 03, 2008 9:56 am Post subject:

Dom, you are a true inspiration, keep it up ok??thanks Carole

Lyon · Posted: Thu Jul 03, 2008 10:04 am Post subject:

mugs · Newbie Joined: Jun 09, 2008 Posts: 3

Ditto DOm:

Thanks do much for your post -- it really made me look at this whole thing in a different way. Not the end of life as we know it, but a change in life that can be handled -- not easily, but possible.

thanks@@@

robbie · Posted: Thu Jul 03, 2008 1:36 pm Post subject:

TwistedHelix · Posted: Fri Jul 04, 2008 12:49 pm Post subject:

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Dom