Russ Newton's thread- new member

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rnewton60

Member
Joined
Mar 1, 2021
Messages
20
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.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,235
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
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
 

jonico

Distinguished member
Forum Supporter
Joined
Feb 21, 2017
Messages
152
Reason
Lost a loved one
Diagnosis
12/2014
Country
US
State
NY
City
Central
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
 

rnewton60

Member
Joined
Mar 1, 2021
Messages
20
Reason
PALS
Diagnosis
11/2019
Country
US
State
CA
City
Fremont
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
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,148
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
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
 

rnewton60

Member
Joined
Mar 1, 2021
Messages
20
Reason
PALS
Diagnosis
11/2019
Country
US
State
CA
City
Fremont
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
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,492
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Welcome Russ, we will walk along with you. I'm glad you have joined and said hi.
 
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