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Montana Carol

Active member
Joined
Jun 22, 2007
Messages
85
Reason
PALS
Diagnosis
06/2007
Country
US
State
Montana
City
Corvallis
Hi, All: I'm a 70-year-old resident of western Montana. I've been tentatively diagnosed with ALS after a year or so of progressively worse speech slurring, mild swallowing/choking incidents, and lately some weakness in my right thumb and lots of muscle cramping in jaw, rib cage, forearm, and legs. I've had an EMG which showed ALS, and I'm waiting for a call to set up an appointment for a second opinion/confirmation at the Virginia Mason ALS Clinic in Seattle. I enjoy playing the piano for school programs and church, as well as our local community playhouse; and so far, thankfully, I can still do those activities. My husband and I also do water aerobics M-W-F, and I'm having fun with my spring yard work and gardening. I'm so interested in these ALS/MND forums and have been searching the posts to see if I could find out what's going to happen with my disease, i.e. how it's going to progress, and have learned only that everybody's progress is different. Right? Have any of you had any experience with the ALS Assn-Evergreen Chapter in Kent, WA? They've been very nice and have put me on their newsletter mailing list already. Evidently they're the liaison/service center for all northwest PALS, including western Montana. Thanks for being here!
 
Hey Carol-

Always wanted to move to Montana! Sorry you had to join us like this.

Yes every one progresses differently. But, you can rest assured that everyone here will help you along the way.

Since I'm on the right coast - can't help you with WA facility.

CJ
 
Hi Carol: Welcome to the group....Sorry we had to meet here but just wanted to let you know that there are alot of great people on this site. They are very helpful and I am sure everyone will help you on your journey. Feel free to ask anything you like there is always someone with an answer. Take care. Anne
 
Hi Carol, and welcome..I live in MT too but a different world than you--way over in northeast MT, out on the prairies.
Also know that MDA (Muscular Dystrophy Assn) is active in Montana, and they have an ALS Clinic monthly in Great Falls and Billings. You can get registered with them and there are a few benefits, like grant $$ for wheelchairs, support groups, magazine etc. Check out mda.org and type in your zip code for local info.
My husband Shannon was diagnoseded with ALS in 8/04, at age 40, at the Mayo Clinic in MN.
You will get much help and support from this site.
Good Luck to you--Beth
 
Hi Carol -

Welcome to the forum. Sorry for your diagnosed but glad you are still able to enjoy some of your favorite activities. Nice to meet you.

Liz
 
Hi carol-welcome to the fourm. As you can see we have a lot of kind and considerate members who are willing to reach out at any time. I am sorry to hear about your potential DX. If you have any questions just ask away! Almost no topic is taboo, in fact quite a lot of ground has been covered already, as you will learn when you poke around the site. Glad you decided to join us! Cindy
 
Thanks!

Beth, thanks for your info about resources in Montana. I will check with MDA.org and see what my options are. I want to check out voice-banking equipment and see if I can get a bunch of stuff recorded in my own voice before it's gone.

CindyM, thank you, too, for all you do keeping this website up and running, and for your kind words.
 
Carol:

I sounds ike you have a very upbeat attitude. This is very good. I will keep you in my prayers.
 
Carol, You will find yourself coming to the site often, it has been my life support (bad pun). The people are great and always have advice, but never leave out the fact you have to get dr ok on advice. Everyday is a gift. And you seem to appriecate that you go girl! Welcome to our family. sherry
 
Montana Carol,

Here's a good site for speech banking:
<http://www.asel.udel.edu/speech/>
Don't delay, the voice deteriorates quickly.

Pappy.
 
Thanks!

Yes! I've started a new thread for this topic of voice-banking. Thanks so much for the info. I found the website on Mike Bougher's (hope I remember his name correctly) website and downloaded the InvTool and Model Talker software. I'm recording words and phrases as fast as I can. See the other thread for more info.:-D
 
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