How do I cope with my progressing neurological symptoms?

[mossygarden]

I've been diagnosed with Parkinson's, radiation myelopathy and most recently primary lateral sclerosis and inherited spastic paraplegia.  It seems to me that they just don't know.  My symptoms have progressed since about 2014 despite a number of neurologists telling me my symptoms wouldn't worsen.  

[AnnieBrooke]

In other words, the first doctor said Parkinson's, and the second said something else but not Parkinson's, and the third said something else but not the first two things? Have you tried somewhere like a teaching hospital, or a respected clinic like Mayo?

[AnnieBrooke]

Also, what *are* your symptoms? I thought this might be a follow-up post to one where you describe them, but don't see any other posts of yours.

[mossygarden]

Thank you, Annie.  Sorry.  I had difficulties registering and my info. disappeared. You are correct.  A series of doctors diagnosed me, finally settling on radiation damage to my spine from 2014 cancer treatment.  That is, until about a month ago when my current neurologist suggested I might have PLS or ISP.  No treatment for any of these disorders except treatment of symptoms.  No cure.  

Symptoms:  progressive muscle weakness in limbs, balance issues, spasticity, clonus, slurred speech, swallowing difficulty.

I did see a specialist at UW in 2016, who said it was Radiation Myelopathy.

I don't really need to know what I have, but I would appreciate advice for how to live with uncertainty.

[AnnieBrooke]

Hm. Have you seen the following article?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3613644/

If I understand what they are saying , they suggest some hope for coping (not solving) the problem via a combination of physical therapy and steroid treatment. Have any of your doctors suggested physical therapy? It seems like it would also help with living with uncertainty, since you would have something you are doing to fight the muscle weakness and balance issue, and maybe the spasticity also.

Regarding uncertainty: none of us know how long we are going to live or what will happen with our health along the way. You know more than most people (since you have also already fought cancer) that life is uncertain and physical challenges get more challenging. I would suggest doing something that helps the less fortunate, because it puts one in a good head space about one's own problems, and I'd suggest yoga, and some form of meditative discipline (try several until you find something that resonates). Life dealt you a tough hand. The difference from one person to the next who find themselves in your position is in their will to appreciate what they have left even in the face of physical deterioration.

[mossygarden]

thank you