Russ Newton's thread- new member

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rnewton60

Active member
Joined
Mar 1, 2021
Messages
40
Reason
PALS
Diagnosis
11/2019
Country
US
State
CA
City
Fremont
I am new to this site. I was diagnosed on 11/01/2019 with inherited Bulbar onset ALS. At of today 3/01/2021 I have difficulty eating and speaking but still have full mobility. I am taking Riluzole pills and Edaravone infusions 10 days out of 28. I credit both with still allowing me full mobility in Month 15. Any suggestions or help would be much appreciated.
 
Hi Russ-

Welcome to the forum. We're sorry you find yourself here, but hope you will find the forum a source of support and lots of information.

If you haven't already, please check out the Resources section.

I am sure more folk will chime in with suggestions here for you. If there's something in particular you're looking for, please feel free to ask.


~F
 
Hi Russ,

Just want you to know I am thinking of you tonight...remembering a time earlier on in my journey with my wife on this difficult road. I hope you'll stay connected here, ask questions and search old posts...you'll find a great deal of wisdom from those who have gone before you. I don't have a whole lot to offer, but I think it is great that you are 15 months in and benefiting from Riluzole and Edaravone to the extent you still have full mobility. Wishing you all the best...Jon
 
Jon,

Thank you for your replay. I am sorry you had to deal with this with your wife, I know from my experience I wouldn't wish this on anyone. Thanks for the kind words.

Russ
 
Hi Russ,
I think the most important discussion you need to have with your ALS doctor is about a feeding tube. If you get it in early, you can still enjoy food by mouth but it will be easier to take meds and stay hydrated as time goes on.
I'm sorry about your diagnosis but glad you found us.
Kim
 
Kim,

I failed to mention I do have a feeding tube, got it early on advice from my doctor and some reading I have done online that suggest getting the tube early is a helpful move and leads to longer life. I am really glad I got it after the fact though I do object to the term minor surgery. It may be minor but it was awful painful for a minor surgery. Fortunaltely the pain faded away quickly and I got use to the feeding tube quickly. Thank you for the good advice hopefully others in similar situations will see this and it will help them decide.
Russ
 
Welcome Russ, we will walk along with you. I'm glad you have joined and said hi.
 
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