Can anyone identify with my case

[howdoug]

My specialist assures me that I have ALS but have a PLS component or something like that. I was diagnosed with ALS back in 2000, but possibly PLS because I did not exhibit any muscle fasciculations so cardinal in ALS. After 2 more years of testing with several ALS and MS specialists it was called ALS after my 3rd emg and several MRIs. Basically that last ALS Doctor said the emg was not consistent with MS and that my nerve degeneration was in the base of my brain rather than the long neurons of the spine so typical in ALS. By 2003 - 2004 I was already quadriplegic and my lung function was down to 50 - 60% of normal. On my checkup with my specialist at that time he recommended I get on bipap and get a gpeg put in my stomach. I was shocked and decided to go to our local pool and start exercising as much as I could make my limbs work! This is not recommended with ALS. I didn't care if it increased the rapidity of the progression. Very thankful I did! Since then I have gone to the pool consistently 3x/wk because we could see what it did for me. The most important thing was the actual swim. My caregivers (2 of them needed) work my arms till I can generate some strength and movement in them. Then they flip me over in the water and I stroke as best I can. When I am desperate for air I stop my arms as a signal for my attendant to flip me over and I involuntarily take in a big breath of air. We do this for as long as I can make my arms work (10-20 minutes. Feels so good in my chest to take in these deep breaths. My specialist says this is my medicine and would long ago have died without it. It is maintaining my chest and diaphragm muscles. I guess from a neurologist point of view, my neuron in my spine attaching to my muscles is intact and we are finding another pathway through the dead area in the base of my brain to stimulate these long neurons of the spine. Presently I am at about 40% lung function and am on bipap about 10 to 15 hrs of a 24 hr day. Need bipap now to have enough air in my lungs to be able to converse. But still it's been 15 years! And still no peg. Just wondering if there is anyone out there similar to me. I'd love to visit with you.

 

[lgelb]

I'm having a little difficulty reconciling your post a year ago, where you call yourself a quad, with this one, where you stroke w/ your arms.

But trying to answer your question, a number of PALS here, including my husband, have died without needing a PEG. Likewise, some have died while not nearly as dependent as you on BiPAP. It's the luck of the draw, and some other things, so live for the day.

And to our other P/CALS, the biology and terminology discussed here is rather imprecise, but suffice to say, aquatherapy is like everything else, good till it's not.

Best,
Laurie

 

[howdoug]

Yes I am a quad but am able to 'wakeup' my arms enough to be able to get a swimming action with them. Very thankful. Think mine is quite unique.

 

[lgelb]

If you have voluntary movement on stimulation/command, the nerves that control those muscles still work. Muscles don't move on command without nerves.

The technique you are using sounds like a mechanical version of FES, which some SCI patients use. This leads me to suspect that you may not have MND but rather some undiagnosed spinal condition or lesion, or a brain lesion caused by a silent stroke.

You might want to consult an SCI center that offers FES, to see if they might evaluate you for its possible efficacy in your condition.