Visiting Nurse Association helping

[affected]

The stoma is healing well and you are confident in everything with it now?
You don't really need a visiting nurse most of the time, but I bet it was good having the support.
What kind of help has the PT been giving?

 

[Tomswife]

The PT has been good in getting Tom to excercise. Legs and arms while seated. Also asking him how it feels. He doesn't exercise unless prodded. The traveling nurses have a tough job, and have no/little experience with MND. They were not as helpful as I hoped. I had to request them to check things. One arrived not knowing his condition ("whats wrong with him"). I had to ask another to check the tube. Hmmm.

 

[MupstateNY]

Can you talk to a supervisor and request that they send either someone with experience, or give them a couple names of the ones who've been most helpful?

 

[Tomswife]

Update. Local neurologist says the jerking is not fasciculations. It is spasms. We are staying on the baclofen in the morning and gabapenten going from 100 to 300 at night. But he said he may make further changes.

 

[affected]

Good to know the difference between twitching, spasms and clonus.
You will find with ALS meds, like everything else are often reviewed and changed. I hope you find the sweet spot with them for a while at least soon.

 

[Doing My Best]

Steve had a lot of fasciculations and spasms, often very painful deep muscle cramps. He has gradually been moved up to 800 mg gabapentin at night and 400 mg in the morning. His clinic neurologist says this is still less than ½ the upper limit on recommended dose. It doesn't really seem to make him drowsy as he's adjusted to it, after the first couple weeks, and it's given him a lot of relief.