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NickV

New member
Joined
Feb 18, 2019
Messages
8
Reason
PALS
Diagnosis
05/2018
Country
US
State
CA
Hello Everyone,

I've been all over the website now for a while and have read a wealth of information that I have found useful as I negotiate my journey . So a big Thank You to all of the contributors that have taken the time post . Your experiences and knowledge have already helped me as I continue to adjust my life while preparing for the future. I hope I can reciprocate in someway.

I've been diagnosed 9 months now (May 2018) . Because I exercised moderately everyday, I noticed my repetitions started to drop off, and went to see my PCP for my 60th birthday checkup and 7 months later I received my fate.

Theses days, while I am still getting up, the steps are getting more difficult along with walking and I am now using two hands to grip a coffee mug. I'm on both Riluzole and Radicava (84 doses currently) which I am uncertain about the effectiveness. There has still been consistent noticeable progression.

I was diagnosed at Stanford and I am still being seen there while also participating in one of their current drug studies ( no noticeable effects). I happened to be a Vet (Army 75-79) so I'm also getting care with the VA system. So a shout out to the VA and all the Veterans. I am so proud to be among you and proud to have experienced military service while not always being happy about it at the time.

So greetings to all, and I look forward to getting to know you better.

Sincerely,

Nick Velho
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,520
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
Nick, welcome (I guess)... is there a fitting welcome to ALS?

I hope you join the PVA if you haven't already.

I also use a civilian ALS Clinic and the VA. Be sure your civilian facility sends
your records to the VA. It avoids duplication of follow ups. (PT and OT).

Look forward to your contributions and comments.
 
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lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,589
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Sad to welcome you, Nick. Let us know how we can help.

Best,
Laurie
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,396
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Welcome Nick. Thank you for your service.

I'm sorry you ended up here but glad you found this valuable resource.
 

dldugan

Distinguished member
Joined
Oct 5, 2018
Messages
203
Reason
PALS
Diagnosis
09/2018
Country
US
State
illinois
This is a great site for getting information about the experiences of others. You will be glad you found this forum.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,449
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Greetings to you too, Nick. There is so much to learn here. It’s a great place to hang out, if one happens to have this sucky disease. We’re here to support you.
 

Jamesgol

Active member
Joined
Dec 21, 2018
Messages
38
Reason
PALS
Diagnosis
12/2018
Country
US
State
OK
Welcome Nick,
I'm awfully sorry to see you here. You and I have a lot in common. We are both at somewhat the same stage of this disease, AND we are both connected to Hollister. I used to work for San Benito County. If there's anything I can help you with please let me know.
James
 

NickV

New member
Joined
Feb 18, 2019
Messages
8
Reason
PALS
Diagnosis
05/2018
Country
US
State
CA
Thanks to all for the welcome. I know that this is a place where others truly understand what someone may be going through. Yes Clearwater Al, I have connected with the PVA and another great resource has been the ALS.org website as they local support available such as monthly support group meetings.

And James thanks for your offerand as a 3rd generation Hollister Local, I hope we can share some hometown news in the future.
Nick
 
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