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silas19

New member
Joined
Mar 23, 2016
Messages
5
Reason
PALS
Diagnosis
01/2016
Country
US
State
Virginia
City
McLean
I am a 64 year old male and I was diagnosed with ALS in January 2016. My primary symptoms have been a progressive weakness in my arms. While the EMG says the legs are also weakening, I do not yet feel that. I also at present do not have any "upper motor neuron" symptoms.

I have tried to get into some clinical trials but the fact that I do not have upper motor neuron symptoms has excluded me from every one that I explored. So for the time being, I am trying to eat well, take vitamin supplements, exercise to the extent I can, and get assistive devices like a chair in the shower and a "spinner" for the steering wheel in my car.

I have also looked into stem cell therapy, but I get the sense that it is still very early in the game when it comes to stem cell therapy for ALS. If anyone knows differently, I would love to know!

Other than that, I just try to stay in the present and get through each day. Any words of wisdom from other forum members would be welcome. Thanks!
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
959
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
City
Barrie
It is all you can do. Wake up and ask; How is ALS effecting me today? Then plan your day accordingly. That's what I've done for the past year and a half. Seems to have worked so far.
Vincent
 

pittsburghgal

Senior member
Joined
Jan 7, 2016
Messages
525
Reason
CALS
Diagnosis
11/2011
Country
US
State
PA
City
Pittsburgh
Welcome, Silas. I do not consider you "old" so you can probably guess what age I am!

My PALS started with the same symptoms you have- progressive arm weakness. His neurologist said that this was the slowest progressive type so I hope this will be true for you as well. It sounds like you are doing everything that you should be doing at this point. You will find a great deal of support and information here. It is also good to register with your local ALS Association , if you have not done this yet. They are very helpful and can loan you equipment when you need it.

Sharon
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,137
Reason
DX MND
Diagnosis
07/2014
Country
US
State
CO
City
Vail
So sorry to have to welcome you here, but welcome.

I am glad to read you are being proactive about obtaining the things you need to help. I think that is a big part of getting the most out of every day.

I also very much agree with Vincent's comment.

Steve
 

silas19

New member
Joined
Mar 23, 2016
Messages
5
Reason
PALS
Diagnosis
01/2016
Country
US
State
Virginia
City
McLean
Thanks for all your kind thoughts.

If anyone is interested in clinical trials, there is one using a drug called Tirasemtiv that many people seem to be excited about. Let me know if you need any more info.
 

Buckhorn

Senior member
Joined
Jan 3, 2016
Messages
725
Reason
Lost a loved one
Diagnosis
12/2015
Country
US
State
PA
City
Small town
Hello Silas; welcome to the forum, but sorry you have to join this club. BTW, I don't think your "old" either! I don't know enough about stem-cell therapy to chime in my opinions, but I'm sure you will get some responses. The medication you mention - Tirasemtiv - is apparently in stage III clinical trials to assess it's effectiveness in respiratory disfunction with PAL, in particular .slow vital capacity (SVC). According to alsa (.org) ... “VITALITY-ALS is the first industry-sponsored clinical trial in which plasma samples from patients with ALS are being collected and shared with the ALS research community ,” And, this phase III trial is "...trying to identify biomarkers that may help to assess disease progression and underlying disease mechanisms in ALS".
 
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