It's been a few weeks since my 1st infusion and a little over a week since my last infusion of 300 mg. The day after my 1st infusion I drove my chair quite a bit. Next day – nothing. Since my 1st infusion I have been able to drive my chair 4 times. Twice I have been able to move my hand on the joystick by myself but usually my wife has to move it over and then I can drive it a little bit. My only route since the 1st day has been from my bedroom to my PC table in the living room. This gives me some optimism that over time I will get some use of my right hand back. My right hand was the last thing I lost the use of and so I think it will be the 1st thing I get back if I get back anything.
The main emphasis with this drug is that it stop the progression of the disease or slows it way down. I'm supposed to be glad if it just halts the advancement because MS affects my breathing, speech and thinking as well as my neck which right now works fairly well. To the neurologist the breathing is the most critical.
I have started using a BiPAP breathing machine between when I go to bed and when my wife gets up to go to work. This has given me more stamina to speak and breathe better in the afternoons and evenings.
Sometimes my Smyle Mouse program works with the nose mask on and sometimes it doesn't work very well. Once I have it on all I do is try to read Kindle books and use mouse control to turn the pages. When it works I'm really glad because I usually read before I fall asleep. Watching Amazon videos does not help me sleep and tends to keep me awake so I like reading because it slows my brain down and I can fall sleep easier. I keep trying to figure out how to get my Smile Mouse to work consistently. So far I have not been successful. Like last night it worked for about 45 minutes and then just quit recognizing my face. I'm glad when it works but I wish it worked a little more consistently.
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