Not open for further replies.


:) Well haven't been on here since about June of last year! PLS still my diagnosis but progression hasn't affected me from the waist up. Go often to my neurologist about every 2 months. We've been trying all kinds of meds since Baclofen hits me like a ton of bricks. Takes me off my feet. Have been taking Skelaxin, a skeletal muscle relaxer mostly at bedtime so the spasm subside so I can sleep. Tried Lyrica even though it's for Fibromyalgia thinking it might ease the pain from the spasms. Also took me off my feet for 4 days as it took away what nerve control I had! Mostly in my drastically affected right leg. Have been falling off and on as I don't use any walking assist devices, yet. I do a lot of wall walking which I'm sure many of other PLS sufferers know. My diagnosis since 2005 now getting slightly worse. Still drive, work and do as much as I can. Doctor now has switched me to Valium at bedtime and I've not slept this good since my spasms started keeping me from sound sleep!

I faked it and hid it since 2005 from my employer but last Sept. I went to the owner of my company and told him about my disease as I told him I feared other co-workers might think I was drinking or drunk at work. I was going to retire on SSD as I'm now 61. He begged me not to and said he would accommodate what ever I needed as he didn't want to lose me as he so valued my skills. What a stress reliever! Should have done it longer ago. I now actually work from home three days a week and only go to my office when I need to. Don't know about others with PLS but any kind of stress or tension is a mobility killer!

I am blessed to still be working as I love my co-workers, employer and the projects and people I've met in my 38 years of working.

Sorry to babble on but fell real bad last weekend and shook me back to reality. Legs gave out and had to be wheel chaired to the entrance of my home. Got inside with help from neighbors and a relative.

Stayed home from work for 3 days to heal the scrapes and bruises! Limitations are something we all will learn the hard way with PLS. I hope that the genetic identification they've just found for ALS may lead to some commonality to our MND and maybe help some of us but maybe those yet to get ALS, MS or PLS.

I pray that something is found that helps some or all of us. Lost a cousin by marriage to ALS this summer. He fought for three years and is now is where there is is no disease and suffers no more.

Good night and bless anyone who reads this!
Last edited by a moderator:
hi charleso.
good to hear from you and good to hear how slow your progression has been.
its good you have such a caring employer,i wish i had had a job so i could have worked from home.

sorry to hear about your cousin,my condolences to your family.
they have made a small breakthrough on the research front,i think the articles were posted on the main als forum the other week.
fantastic bit of news for the als community and gives some hope,i think it will also help those of us with pls and other types of mnd.

dont be a stranger,take good care.
just looked it was there but been moved back to .......als research forum.
thread title........research news about the causes of als.
Hey thanks all for the all are so kind even those with a more severe diagnosis of ALS. My prayers go to you and any of us with a diagnosed MND. Wish and pray nightly that somewhere a researcher takes the gene tag they've found and accelerates the use of it to find someway those with ALS can have a med to delay the worst. But, selfishly, I also hope that a side find is some medication that can give relief for those of us with PLS. I whole heartedly believe I'm in my last 6 months of working carrer and then on to SSD.

The best to all here where with ALS, MS or PLS!

The best and my prayers to you!

Charlie, it was uplifting to hear about your employer's reaction. That must of made you feel good! Good luck to you working from home when you can. At 61, you deserve a good retirement. :)

After 3 months of a primary PLS diagnosis, I am finding out my limitations. It is hard to accept at times.....the reality of this disease. Just went on a trip last week from Seattle to Minneapolis. After the 3.5 hr. plane ride, I had a very difficult time walking off the plane. In fact, the attendant outside the jetway asked if the wheelchair was for me. After walking for a bit, I was better. Then again walking through the Detroit airport from one terminal to another... it was slow going. Thank goodness for the moving sidewalks (and my husband). I all of the sudden wondered if I will be able to travel by myself again. So many things like this come up.

I pray each day that this ALS discovery (and finding a treatment) they announced a few weeks ago, works for ALL neuromuscular/motor neuron diseases. Stay positive out there.

Take care,
Not open for further replies.