ALS Men Please Advise!

[affected]

I'm so sorry you've had to join us, but regardless of how often you chime in, this place and these people will help you deal with the unimaginable. The rest of the world will offer condolences, but the people here truly understand what you and your husband are going through.

Perfect example - nuts I just love that - condolences v true understanding. Priceless.

There are just no 'right' or 'wrong' ways in this. We all talk together, share our experiences, but of course we all have our own unique situation.

Still, I have no idea how effective a CALS I would have been, had it not been for the support here.

 

[applesos]

Applesos,

We had very fast response from both the VBA, which is the part of the VA that adjudicates benefits (they're in Bay Pines in the Tampa VA Regional Office), and also from the VHA, which is the part of the VA that provides healthcare.

We didn't have to wait long for calls or appointments. We drove to Bay Pines, arrived before 5 pm, and saw someone from the Contact Team, who reviewed our (non-VA) medical paperwork, saw my wife in a wheelchair, and listened to my story about ALS being a rapidly terminal disease. She immediately took our paperwork upstairs where a VA rater stayed overtime to review our paperwork. Within weeks, my Krissy was adjudicated 100% Permanently and Totally Disabled and we received benefits backdated to the date of our application.

We used the Paralyzed Veterans of America as our personal representative to the VBA.

You don't have to use a particular VA doctor. We used the Tampa VA hospital because they have a very experienced Spinal Cord Injury team and were quite familiar with ALS. We were outfitted with a power wheelchair within days of seeing them.

Your husband's VA PCP should be your number one advocate in the VHA, getting priority for you with the neuros. Your PVA rep has near instant communication with the VARO. Don't lose hope. Maintain a positive attitude and people will be very happy to push you to the front of the line.

Thanks for the great information. We've been to see the VSO at our local VA Clinic several times, but before we had all of the private neurologist's records. He now has all of our documentation. Is this the person who will be pushing our case forward with the Gainesville VA?

 

[1Jimmy]

you know Mike I'm ashamed to admit it but it still bothers me to go out with a cane and a neck brace, let alone when the time comes for a wheelchair. I just don't want people to see me like that-but it won't get any better.

i understand ccompletely, i am 65 and look 80. head down all the time and slow on my feet but i just dont care anymore i cant do anything about it

 

[Atsugi]

APPLESOS: The VA Regional Office in St Pete makes the compensation benefit decisions. I suspect the Gainesville VA Medical Center has a liaison office there. It would be good to find out.

I recommend using the Paralyzed Veterans of America as your VSO, since each and every member of the PVA truly understands the challenges of the paralyzed. Of course, if you meet an energetic and knowledgeable VSO from another organization, that's fine, too. But the DAV is generally used by non-paralysed vets, and so is super busy.

Test your VSO by asking him where your paperwork is now. He should be able to make a phone call and know exactly how long it will take to process.

 

[MaxEidswick]

>Also be very careful of falls-any damage done will speed up disease progression and whatever you do, dont go near anyone with a cold. We lose breathing function that does not return.

this is important!

>My dad was a prisoner of war. He told me that he once complained that he had no shoes, but then he met a man who had no feet. I learned from him that you do what you have to do, and just count your lucky stars each morning that you wake up on this side of the dirt.

that's it, Mike -- there is always someone in worse shape than me. just thankful for what still works

 

[Barbie]

Apple, I wrote you a very nice response earlier this week but it disappeared(my fault I think not moderated ) . Anyway, I think his diagnosis is new and he is in shock. you are in shock too. Give it a little time. Do you have one close friend that you can confide in? That helped me not lose my mind.

I actually work near you so if you ever want to get lunch let me know

 

[ECpara]

Applesos, that is tough to deal with, I know from experience. My husband has had ALS for over 2 1/2 years and would tell his friends he had a motor neuron "problem". He can't talk or eat (bulbar onset). Some "problem", huh? I did tell people on the sly, they deserved to know and quite frankly, so did I! Well, he finally came out, so to speak, when this Ice Bucket Challenge hit the airwaves. He decided to participate and tell the world. I was shocked. But the outpouring from family, friends and strangers has been overwhelming. Glad all the sneaking is behind us. In time, your husband's condition will warrant telling everyone the truth. In the meantime, do yourself a favor and confide in a few good friends, or family. You won't regret the support. You need that.

 

[applesos]

I really appreciate your advice. Seems like our situation mirrors yours. I couldn't hold this "secret" in and told family and close friends, which helped me to feel that I wasn't in this alone. Once the "ice bucket" challenge caught on, some of my friends and family videotaped themselves and dedicated it to my husband. This included our adorable 7 yr. old granddaughter who was doused after clearly stating that she loved her grampa Ed and would take the challenge for him. That was certainly a very moving way for him to realize that the secret was out. That fact has made our lives easier, I think. No more excuses or pretense! We're "out of the closet" and it definitely feels better.
Thank you for sharing your experience in this regard. I helped me to realize that I'm not a horrible person for blabbing and blubbering!

 

[cheerleader]

Applesos, blabbing and blubbering are part of this journey! You are in the company of many blabbers and blubberors! Tag we can laugh together as well as cry! Hugs. Donna

 

[affected]

Well done applesos!

I think that at first in particular, PALS can feel that people see them as the disease, but with time and love they can realise that we definitely separate the two.

That's just another wonderful thing the challenges have done!

 

[ECpara]

Applesos, I love that your husband has "come out", too! Whew! Isn't it a relief? I am forever thankful for that Ice Bucket Challenge, what an "icebreaker" for us. Now we can babble freely!

 

[Tsipi]

I can fully relate to what you are going through. When we got my husband's diagnosis (Dec 2011), I needed to talk to the people I am close to about it, but it took Silvio a few months until he was ready to tell people. At first he was saying he had a problem with his tendons in his hand, then he said it was a neuro-muscular disease in his arm. A few months later, he told me he thought it was time "to come out of the closet" (his words).
Part of the problem was that he didn't want to see the pity in his friends' eyes and didn't want the way they related to him change.
Perhaps you can talk to him about telling one person - a close friend, perhaps? Once he has told somebody, it will become easier the next time. It's a process of coming to terms with it himself, and sharing the diagnosis with his love ones is a part of that process.