Happy to be back
AnonymousJuly 14, 2006 at 4:59 pm
Well it’s been quite awhile since I’ve posted – had been trying the site for sometime and suddenly there it was !
My recovery continues slower then I might like but still forward — First Diag.Jan 3 2004 — resp/ April , Trached /May ,finally eating by June – 3 mths at Burke Rehab , then to sub acute and back to Burke -home to new wheelchr accessible place March 05 — rehab has brought me along quite well – once up (those sit to stands still very tough) can walk with walker 1500-2000 feet – Tired after that — still have work to do with left arm and both hands still coming along slowly — in rehab 4 days a week – OT/PT and pool -the pool continues to really challenge me and I believe it has been a very large part of the recovery — toileting, bathing, eating and even some cooking all now undercontrol – have an E-Stim unit at home – and a full program of home exercises –kept weight the same — so things even after 2 1/2 years look promising —
Have a great support grp at Rehab unit in Danbury Ct and am back woking from home each afternoon…
It’s been great to see some familiar names back on the forum
Wondering if anyone has heard from M Muirhead (I think that is the correct spelling)
The best to all
AnonymousJuly 15, 2006 at 7:17 pm
My mother has had GBS since May,2004. She lives in Auburn, Mass.
She has had a severe case and was away for almost 2 years.. She is currently home but is no way near walking yet.. I know how frustrating it is for her but honestly it is on me as well.. She can not really do anything for herself yet.. Her hands are slowly coming back and we are seeing some small changes but she still needs us for everything. She looks fabulous but can not do much of anything
She only receives therapy twice a week which I think is not a lot but if I mention it she will cry. She does have lots of pain, especially in legs but I wonder sometimes if she is not doing enough.. I feel so awful saying it but I wonder a lot about it.. I have often thought of water therapy but what can I do to ensure it happens.. What things are you doing in therapy Robert? How is your balance? When I see her stand ( with help from Dad) to go to the bathroom its a if she is a rag doll.. There is no balance.. UGHHHHHHH
I wish you luck in your progress.. If you have an advice I would be very appreciative.
AnonymousJuly 20, 2006 at 4:51 pm
My activity includes a great deal of work w/ OT in upper body excercising —
lifting light weights — fine motor control with hands –
For walking — my balance probably not truly tested on land as I use a walker — in the pool in 3′ of water I have to concentrate very hard to walk with out looking “drunk” starting to do steps in the pool and very small steps on land — They work very hard on my core —
Bathing etc is done in a shower chair– my toughest task is getting from sit to stand
I’m doing 4 days a week which is a fairly heavy load
Hope this is some help
AnonymousJuly 20, 2006 at 5:41 pm
It sounds like your mother’s pain is still not under control. Until it is , she’ll have a very hard time concentrating on exercise or anything else.
There are meds out there that will help stop the pain. Talk to her doctor with her about this.
Also, remember that this is not a disease of the muscles – the nerves controling the muscles are the problem. Those heal at their own rate and pushing physical activity too much or too soon will cause a setback. Be patient.
AnonymousJuly 21, 2006 at 8:56 am
Hi Robert. I’m back visiting the site after a while as well. My mom, Barbara, was diagnosed almost 2 years ago (Hi Amy!). It’s so great to hear from people who are long-timers and still working at recovering. My mom is still on vent at night, still in wheel chair, still can’t roll over in bed. But….she really is still getting better! Keep up your hard work. I’ll share your post with Mom, and I know she will be encouraged to know she is not the only one who didn’t “get over this in a few months.”
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