Long Road to Diagnosis and Just Had a Baby

Wilson2009

Distinguished member
Joined
May 4, 2017
Messages
209
Reason
PALS
Diagnosis
01/2017
Country
US
State
KS
City
Lenexa
First, I am so sorry to have to welcome you to our band of brothers and sisters.

Without knowing the particulars, if you have not been rated by the VA at 100% based on your medical retirement, I would strongly suggest that you contact the nearest national service officer of the Paralyzed Veterans of America (PVA) to get the paperwork processed for the rating and the vehicle and housing grants that follow the rating. Might want to read the pinned posts in the Military Veterans sub forum.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,820
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
Kate… “ditto” to all of the replies above. This Forum will serve
you well. With the little ones my heart goes out to you.

I’ve always been reluctant to use the word “Welcome”…
rather say, “Glad you found us”.

To me it’s like the song “Welcome” to the Hotel California.
With a diagnosis of ALS the verse...
"You can check out any time you like but you can never leave."

I’m known here as having a little different approach to things. :)
It’s a forum. But… the Forum has several extremely ALS
knowledgeable members and Moderators.

Glad you’re here… keep us abreast and participate.

And I am Veteran too with years of service (Reserves)
Thank you and your husband for your service.

Reach out to the PVA (Paralyzed Veterans America).
They specialize in Veterans with ALS. If you haven’t.

Ooops... Wilson beat me to the PVA suggestion. :)
 
Last edited:

lgg

Member
Joined
Mar 19, 2020
Messages
16
Reason
CALS
Diagnosis
11/2017
Country
US
State
TX
City
San Antonio
Kate, I don’t know if you are aware of the VA’s involvement with veterans who have ALS. If not, I strongly suggest you contact Disabled Veterans of America (DVA). They and the VA are a godsend. I wish you the best. We certainly feel your pain. But, like you, I’m a planner too. PVA provided the information I needed to more forward in a more linear fashion. Leslie
 

KateMMA

Member
Forum Supporter
Joined
Apr 30, 2019
Messages
18
Reason
DX MND
Diagnosis
02/2019
Country
US
State
CA
City
Oceanside
Thanks Nikki, that is promising!
 

KateMMA

Member
Forum Supporter
Joined
Apr 30, 2019
Messages
18
Reason
DX MND
Diagnosis
02/2019
Country
US
State
CA
City
Oceanside
Thanks for the info!
 

KateMMA

Member
Forum Supporter
Joined
Apr 30, 2019
Messages
18
Reason
DX MND
Diagnosis
02/2019
Country
US
State
CA
City
Oceanside
Hi Jim,

Thank you for the note and I am so sorry you lost your wife. She was so lucky to have you as her caregiver and partner through this terrible disease.

I'm lucky to have my husband and supportive family as well. I'm so grateful for them as in sure your wife was grateful for you and all of the support you gave her.
 

KateMMA

Member
Forum Supporter
Joined
Apr 30, 2019
Messages
18
Reason
DX MND
Diagnosis
02/2019
Country
US
State
CA
City
Oceanside
Hi Kim,

Thank you for all of the recommendations!

My neurologists have been very thorough with the blood work and everything has come back normal so far.

I also have celiac disease, so my health and nutrition is monitored closely by my GI as well. I guess that's a silver lining of having celiac?

You're right, I am very lucky the disease has progressed slowly for me so far. We're hoping (as I'm sure everyone here is) that I can last long enough for a good treatment or even a cure to be found.
 

KateMMA

Member
Forum Supporter
Joined
Apr 30, 2019
Messages
18
Reason
DX MND
Diagnosis
02/2019
Country
US
State
CA
City
Oceanside
Hi Wilson,

Thanks for the tips! I definitely have a lot to learn about the VA stuff. My neurophysiologist set up a referral for social work for me to help guide me through some of that but I'll definitely contact the PVA as well.
 

KateMMA

Member
Forum Supporter
Joined
Apr 30, 2019
Messages
18
Reason
DX MND
Diagnosis
02/2019
Country
US
State
CA
City
Oceanside
Hi Al,

Thanks for your support and your service. It seems like there are a lot of vets on here with a lot of good information.

It's not the group anyone wants to be part of but everyone is very welcoming and supportive!
 

KateMMA

Member
Forum Supporter
Joined
Apr 30, 2019
Messages
18
Reason
DX MND
Diagnosis
02/2019
Country
US
State
CA
City
Oceanside
Hi Leslie,

Thanks for the DVA recommendation as well! I'm glad there are a lot of supportive groups out there, especially since there seems to be a lot to learn on this journey.
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
3,975
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Kate,
Interestingly, Mayo suggested a gluten-free diet because I was having stomach issues long before ALS diagnosis. I've been gluten free for about 7 years. I also went dairy free and it helped me feel better. You have to be careful with celiac. I can cheat on Thanksgiving but, with celiac, you cannot.

Best wishes and we are always here for you.
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,245
Reason
DX MND
Diagnosis
07/2014
Country
US
State
CO
City
Vail
I also hate to welcome you here. As you know by now, this place has an amazing assortment of caring and helpful people.

I don't have much to add to what others have already said, except to encourage you not to be shy about asking questions.

Steve
 

KateMMA

Member
Forum Supporter
Joined
Apr 30, 2019
Messages
18
Reason
DX MND
Diagnosis
02/2019
Country
US
State
CA
City
Oceanside
Thanks Steve, I'm glad I found the forum. I know I'm going to learn a lot from everyone. Everyone is so welcoming and supportive.
 
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