Introductory remarks

[Guest guest]

Dear PLS Friends,

I've just joined this egroup list, and as suggested, I am writing to

introduce myself.

My name is Zsolt and I live sort of in the middle of nowhere in New

Mexico.

A year ago, after having a barrage of tests done (which eliminated

everything from Lyme Disease to Syphilis, from tumors to mitochondrial

causes), the neurologist suggested I might have PLS. This was because of

my pronounced upper motor neurone symptoms: dysarthria, hyper-reflexia,

spasticity, weakness in legs and hands, and bulbar involvement affecting

my face, throat and thorax. My EMG's continue to show normal, and there

is minimal lower motor neurone involvement. My symptoms and condition

continue to progress, yet the doctors are reluctant to give a definite

diagnosis, wanting instead to wait and see how the progression plays out.

I now use a walker at home, a wheelchair when out and about. Last

Friday I began using a BiPap machine because of a reduced ability to

breathe. This has been very helpful, though I must admit takes a bit of

getting used to.

Overall, however, I feel I'm doing well with the continuing changes and

challenges that this condition has brought to my life. (And I'm very

thankful for spell check, as it helps tidy up my ever clumsier typing

skills!) I have a great crew of friends who help me. Some of them have

recently initiated the Z Team, in order to help coordinate some of my

personal caregiving needs, particularly helping me with my water therapy

at the pool and getting me to doctor and therapy appointments. Other

friends help with cleaning and light construction around the house.

Since the doctor's first suggestions of Motor Neurone Disease, I've been

keeping a chronicle of my life, which is a series of essays rather than a

journal. I find this has been helpful in order to sort through things,

rigorously observing my life and thoughts as I write about events and

emotions connected to what is occurring to me. What I've found most

interesting as I continually ponder my life, is how beautiful it is.

Even with all the challenges, both physical and psychological, brought to

me by the constant degeneration of my body, when I write about the people

who help me, the kindness of strangers, the caring of a diverse

community, I find beauty in it. But then, I find life beautiful.

Anyway, thanks for letting me be part of your group. I look forward to

the opportunity to learn through your experiences, and to better

understand what is happening to me.

Best wishes,

Zsolt

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