Belated Welcome to Jen

[Guest guest]

Sorry for the belated welcome....but welcome nonetheless!!

I don't have the voice issues but progressed quickly in other ways and am in a

wheelchair full time (unless walking in the pool!!!!). I actually only had

about 6 months after significant onset of the symptoms where i could walk and

then try a cane, then a walker. Arms and hands actually started the whole thing,

but quickly moved to legs! Am working on getting some torso strength and leg

strength back after 2 years in chair by doing my version of pool therapy, after

pool therapy was over. Was like a whirlwind going to see all these doctors to

try to figure out what was going on.....think they ruled out everything and

altho i am still on notice for als, it doesn't really appear to me that is going

to be the case----or i will it to be so anyway!!!

There is an enormous amount of support here and an enormous amount of

information that each of us hold. Altho we are all different and have our own

quirks (both within and outside the illness---LOL!) we are all here sharing the

same basic journey and the same basic emotions that come with having a

progressive, chronic disease over which we have no control!

Take care and i see other posts i have yet to read so far (either I got very

behind or we have been extra chatty lately---i think it is me tho). Is fun to

see posts when there are successes and posts when there is not, so do keep

sharing. By the way, we are having the first women's retreat here in tampa fl

in oct if you are interested please let me or kathi geisler know. There is a

survey and all the information on the sp-foundation.org website.

Tawny

email from

Tawny H. Swain Castle, MA

Re: welcome from Delores

Thank you Delores for the warm welcome. Like you, I starting wall

walking, progressed to one cane and now use two forearm crutches. You

are fortunate that your voice is unaffected. Some days I never know

what is going to come out when I try to speak. Some days my voice is

hoarse, some days a whisper, but mostly it is just slow and halted.

I had to go to google to look up what NORD is (National Organizations

for Rare Disorders). Thank you I learned something new today.

Jen

Dolores Carron wrote:

> Welcome to you both. I'm sure you will find the members of the list to

> be a great source of experiential information and support. I have had

> symptoms of PLS since 1985 or so. My diagnosis did not come for almost

> 10 years after that. Over the years, I progressed from " wall walking "

> to a cane and for the past 10 years, I've been using a walker. My

> voice is unaffected. Most of my weakness, spasticity and pain are on

> my right side. In response to your questions, I do have lower back

> pain, burning in the soles of my feet, and an ache in the back of my

> left thigh.

>

> I am a Registered Dietitian. I had to stop working in 1995 because of

> difficulty walking. My work area (in the dialysis unit) was 76 degrees

> in both winter and summer. I am very heat intolerant and am

> significantly weaker when I am in those temperatures. I feel the

> strongest when it's 65-68 degrees and not humid.

>

> Another PLS Friend, C., and I organized the first large

> gathering of PLSers in October 2000. A photo of the attendees is on

> the inside cover of the NORD booklet about PLS. I live in CT and am

> the organizer of the CT Connection. We'll be having another get

> together soon. Our " big " meeting is usually in June but I'm running a

> little late due to some non-PLS medical issues. I hope you'll both

> have the opportunity to attend a connection in your area or elsewhere.

> Meeting people who share the same challenges is very reassuring and

> uplifting. Yes, we share our concerns, but mostly we have a great time.

>

> Dolores

>

>