Newlyweds- Newly Diagnosed!

[gooseberry]

Our pva rep got our info to the regional pva office. They hand carry the paperwork to the va person and if necessary wait for a determination. The pva people do have a back door into the va system. If you dont hear something from your rep after things have been filed for a coupl eof weeks, call. They can check for you.

 

[Chumpy]

Once again thank you for all of the info.

 

[DreamsEnd]

Chumpy, your posts really touched me. This HAS to be so stressful for you and working such long hours while trying to deal with it all. We too are newly weds, my PALS was DX'd about 15 months after we were married but fortunately he has been cooperative all the way an we're working thru it together.
Please, please, please follow the advice about contacting the PVA, you will be STUNNED at the assistance available from the VA. You won't need to work those 14 hour days any longer! Contacting the SCI (Spinal Cord Injury Clinic the department at many VA hospitals that serves ALS vets) social worker for advise as well is a great thing. We call ours our Guardian Angel.
I have insisted on attending every appointment with him and mostly manage his appointments and care. There is SO much to learn, about the VA, about this disease, how to plan ahead and how to LIVE with this disease and it's changes.
We're all different and react differently but there is assistance and peace to be had. I am the pushy type (can you tell? ) and I would and did insist we get help and I kep asking questions and making calls until I figured it out or we got what he needed. Yes, our PALS need to have control but yours is out of control so when you can get some help (medication, financial, aids, etc.) life will be easier for you both.

Sending you strength and support.

Sherry

 

[Barbie]

welcome Chumpy, you have gotten a lot of good advice that I can not add to. don't beat your self up--this is a hard road we are all on.

 

[Lilacs53]

No advice Chumpy, seems like everyone has covered it....just want to tell you that I'm sorry that you and your husband are having to go through this. (((((Hugs))))))

 

[Chumpy]

I wanted to update and Thank Everyone! We have contacted PVA and are working on gathering all the info needed to submit for VA benefits. Thank you all again for your open arms and large hearts!

 

[MaxEidswick]

like all the others, sorry to meet you here but welcome!

The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have found that being active here on these forums has helped me in way I cannot explain, but you will see.

before trying miracle cures, etc., ask here, go to alsuntangled dot com.

Lastly, anxiety can be debilitating so beware.

Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick people, especially w/ respiratory problems.

Kind regards and warm welcome,

Max

 

[MaxEidswick]

also remember the PALS rules:
------
#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins

ALS is about living, not dying!
-----
ok well, we take what we get and be glad for what we have
------
If you have not yet, go to youtube and search "ALS ABC" and watch all 3. I sent those to friends and family, too.