Have PLS since 2001

[noelwilton]

I am age 67 and began falling , tripping and losing balance upon standing in 2000.
After many many test's and doctor's visits I was diagnosed with PLS.
The progression worsen and now I am in a mobile wheelchair. I can stand and walk with two canes for just a small distance. My speech began to slurr last year and has gradually become worst. Cough and choak easily and it has wosen. Took test and my muscles are not working in throat.
Yesterday I had an "incident" where my eyes had the floaters and wavey lines but became worst, then I was confused and felt faint. Doctor said could not find any thing related to stroke but could be PLS. Has anyone else experienced this?
Would like to hear from others with PLS. Live in Oklahoma City but originally from New Zealand.
Noel Wilton

[Frizzel]

Hi Noel,

I have PLS and have for at least 9 years. Had what the doctors believe was Guillian Barre Syndrome with mono at the same time 11 years ago. I became completely paralyzed. Took two years to learn to walk again. That was a NIGHTMARE! The PLS started just as I was coming out of the GBS and now I am in a power scooter although I can still slowly Penguin Walk around the inside of our home. I use synergy simplicity cushions to sit on or the pressure points get very painful. Spasms are constant and tsunami cramps and spasms happen at times if I try to keep standing when I should get off my feet.

I have foot drop and wrist drop on the left side. The EMG confirmed I am now showing lower motor neuron involvement. My Doctor who is an ALS specialist says I have PLS that is moving into ALS.

How is your breathing? Has your doctor ordered a pulmonary function test? Are you with a doctor who specializes in PLS and motor neuron diseases? You really need to be with someone who KNOWS MND's and can help you walk through this time.

The neurologists who originally diagnosed me said, "You know PLS is a very very rare disease. Call us any time you need us." Heck I didn't know WHAT I needed NOR was I able to figure out what I needed to get myself ready for all the adjustments. I found myself someone who does know how to keep me going as long as I'm able.

This forum has been so helpful and these people are the jewels of the web. I feel the warmth of them shining even when they aren't posting.

If you would like to PM me, you're welcome to Noel. We're all troopers here and we all are who we've always been on the inside, just adjusting to new ways to stay bright. At least, I'm trying to stay on the bright side.

All the best!

Frizzel