Balance / Walking

Hello everyone,

Has anyone heard of someone regaining their balance and walking ability after 4 years on the Capi? I'm starting on my 3rd year. I lost my balance in May 2011. At that time I could walk holding a persons hand. The Cap has made my legs too weak to walk. I am dependent on a wheel chair, and it's driving me crazy. The intention tremors are bad, but not walking is worse. My optic neuritis is worse as well. I have had MSi for 17 years, but it's never too late to kill the infection. This is brutal! I would love to hear some encourgment.

Comments

How long do we keep going?

Hi, that was a question I wanted to ask too - I started after programme in australia, at the end of August 2012 and by now I am getting fed up with side effects etc - however, can't complain too much as after the first year I had big improvment with my eyes - can now see out of both, which is mega, walking and balance still v bad and suppose I just have to be patient , keep taking the pills and keep hoping.

Seems there are several of us asking the same question - Suppose we all have to keep going and encouraging each other.

Best to all of you , love Suzannne

diagnosed RRMSi 2000 - had v little trouble til 2009 when changed to SPMSi - since then things got steadily worse.   Had ccsvi procedure 3 times, helped with general fatigue but did nothing for walking - started abxi 24.08.2

Well, I have already decided

Well, I have already decided to be the first person to regain their walking ability after 3 or 4 years on the CAPi.  So, you can just give up.....the title, accolades and fame are almost mine. Wink

I don't need the competition quite frankly.

If you stop, you'll probably start progressing in a couple months. That would be the right time to start shopping for a good nursing home. I hear the ones outfitted with moats and barbed wired fences have great atmosphere.Wink

Seriously, keep fighting. The side effects of this treatment suck big time, but even the tinest glimmer can lead to great things.

I guess Jen has the right

I guess Jen has the right fighting spirit. After 7 years mine sometimes flags. I started the protocol while walking outside the house at a fast clip with a flimsy cane. Inside the house I used nothing. Now I use a walker inside the house and a wheelchair outside. A motorized wheelchair was recommended but I refused it. It takes over the use of ALL muscles. A scooter is better because you must balance your trunk muscles.. Now, my decline (actually, 1 step forward, 2 steps back) may have been due to my inability to tolerate the meds as well as having every tick-born disease other than West Nile -- I don't know. But I do know that part of the struggle is to keep some musculature despite other declines. Use a wheelchair as little as possible. Try to move and use the muscles. A 2 lb. weight may feel like 40, but you've got to keep some muscle for the nerves to signal.

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

Try machine pilates.  I

Try machine pilates.  I started it at the end of August, I do it once a week with my physiotheripist and am amazed by how little has given so much.  today I was able to vacuum without holding onto my walker.  I have not done that for a long while, I think not since before my bad fall in May.  Being machine based you have resistance and you can do some of it laying down. 

MSi Diagnosed 07/03/05, copaxone Jan 2011 to Jan 2013, started doxyi 13/10/12, started roxyi 06/11/12, increased doxy 28/11/12. first metroi pulse 01/01/13. Tinii Dec 2014. Fampyra,B12,Vit C,Vit D3,Vit E,Vit K2, NACi,ALA,AcetylL-Carnitine,Fish oil,

Have you tried deep water

Have you tried deep water aqua at all?

 

When my CFSi was really bad I could not bear to walk - too painful... but deep water I had a float belt - so I could just hang there if i wanted... and when I did move I had resistance and feedback(from water flow over limbs)... plus it did not add strain to my poor pain wracked limbs

Started NACi Sept'14... 100mg Doxyi Dec'14...  Roxi 13Dec '14 Supplementsi...