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Chumpy

Active member
Joined
Dec 23, 2014
Messages
42
Reason
CALS
Diagnosis
11/2014
Country
US
State
Texas
City
Fort Worth
:shock:

September 2013 my PAL started sounding drunk, he had been exhausted a lot...pretty wore out all the time. He was worried he might have chronic fatigue like his mother did when she was a live.
So time went on and he refused to follow up with the doctor...a mans man! Adapt, adjust, and over come! He had a drinking problem in the past, but had been doing well not drinking for almost a year. I was still concerned, he was getting weaker on his right side! I thought maybe a stroke! I begged him to go to the doctor. by this time it was April of this year. He got in with his PCP in June, had all the basic test and physicals done. They didn't find any thing so they referred him to a neurologist. October 2014 was the first Neurologist, he felt strong it was MND..... He had done several MRIs, brain scans, etc. Might I add we met our deductible fast! The neurologist wanted a second opinion with an ALS clinic in Houston TX. problem was soonest was Feb. 2015! So we asked for one local in Dallas! We were able to get in the next month.... If you have not experienced an ALS clinic first visit....be prepared for a day of all kinds of tests! Dietician, occupational therapist, speech therapist, social worker, medical device guy, physical therapist, and of course the neurologist! If I forgot anyone I am sorry, it was a full day!Even before all the tests, EMG, blood work, 24 hr urine test. The doctor said he was 99% sure it is ALS....I have to say I failed as a care giver! I bawled a bunch!
A few weeks pass and no phone call, nothing.... What did the tests show? My mind was going in so many directions. Now through this sadly my husband began to drink again. The stress of it all, put him in a spin emotionally! I left several messages with the doctors office. They called him and said all the tests were negative.... I wish they had called me and not him. He was not in a clear state of mind. I have to admit I was excited thinking NO ALS....will sadly NO other things, so yes ALS! I watch him get weaker and weaker. over the last 4 weeks. Still drinking telling me he just cant deal with it right now.
I don't know what to do. Most of the time he chokes on his food. Always having to clear his throat to keep from choking. Or just throws it up! His left hand and arm are shrinking away. His chest is looking like a 70+ year old now and he is only 46. You can see the tendons or bones in his hands, almost like there is no meat, just bone and flesh! He has lost almost 50 lbs since April. The social worker wanted me to get him set up through the VA since he served in the Army. He is in such a funk he doesn't want to do anything!

As a care giver what do you do, how do you proceed? I am at my wits end so much of the time! Any info would be helpful at this point! Sorry I am so long winded!
 
I will let other people chime in since I'm not my dad's actuall caregiver. But, you definitely need to contact the VA immediately. That much I can tell you for sure. They have been a lifesaver financially for my dad. They got a electronic wheelchair, van, hospital bed, wheelchair ramp, etc. They give him so much for his care as well. They go way out of their way to help. So sorry for you need to be here. Let me know if you need to talk or I can do anything for you. Kim
 
My dad is currently living in Dallas as well. He see's Dr. Heinzman who is a ALS specialist. My dad really likes him.
 
We see Dr Jeff Elliot at UT SouthWest. They seem very detailed on the initial visit. Not too impressed with the follow up or follow through. I am also shocked at the lack of something, anything. Seems like they just say go live see us if any new problems.....ugh! I feel like I'm just sitting... I am a doer and a fixer. This is driving me crazy, I don't know what to do next!
 
If you received unacceptable service somewhere would you just accept it? No, you say something. Call the office and ask what the next step is. Ask for copies of the test results and office notes if he signed for you to have access. Ask questions. Dont ever let a doctor or nurse who is treating you or someone you are with if you dont fully understand wha tis happening.
 
You are right I called today and I am waiting for a call back. I have to say in my defense I work 14-16 hours a day. I am trying!
 
Good luck, I know from experience that you have to show patience.

Janie
 
Oh chumpy, how devastating :(

Let me say first - ALS robs the person of a feeling of any control, so a PALS will often try to grab any control at all that they can. Sometimes, what can happen, and sounds like is happening now, is that he is exercising his control by drinking and refusing to do anything about the situation. Now we can't fix him, ALS is terminal, but quality of life can be achieved and there are so many PALS (person with ALS) here that are my absolute heroes because they have learned this and are amazing examples of living with ALS.

There is another side that you may need to consider having checked out. Up to 50% of bulbar onset PALS also experience some level of Front-temporal degeneration (FTD). This affects their ability to examine cause and effect, make complex long term decisions, can cause paranoia and anger outbursts and other behavioural issues. I'm not saying your husband has this, it may simply be his reaction to such an awful diagnosis. But I would be talking to this clinic and making it clear that he is NOT coping, that you are NOT coping, and that you don't know if he is depressed, not coping with the diagnosis or has some brain involvement, and that he needs to be seen and this side of the situation addressed.

Don't beat yourself up that you are not doing enough as his CALS. You are trying to adjust to the unthinkable yourself, and having to learn on the fly (like all of us).

Now you have joined here you have some support at least, and we can try and help you as we can. This shows that you are in fact being a great CALS! We can't fix our loved ones, but we can strive to give as much quality as possible. We don't always succeed, my husband had FTD and I chose at times to simply allow him the control of making very poor decisions rather than take the control away from him.

My husband began bulbar symptoms only a year after we were married, I know how hard this is to accept the loss of your dreams when they had only just started.
 
Keep pushing for the VA. If you served in the military, your chances are 60% higher of developing ALS. The VA really helps their own! If you can get him in, you can call ahead and let the social worker or psychologist on the team there know you need to talk with them without him being present. They will arrange that while he is being tested. Then you can express your concerns. This is so hard to deal with- hugs to you. You will have lots of support here. Donna
 
********************

OK. -> important. Do NOT try to work with the VA directly. You will go mad and probably screw things up.

DO call PVA (Paralyzed Veterans of America) the Texas contact info is at the bottom of this page: http://www.texaspva.org/contact-us.html

The PVA is authorized to work on your behalf and unlike you (or I) they both understand the VA system and has special hooks into it.

Any Vet on this forum will echo this. (I am one and have been using the PVA)

you can find some info regarding Veterans Benefits in this sticky found at the top of the General Discussions forum: https://www.alsforums.com/forum/general-discussion-about-als-mnd/26955-guide-veterans-benefits.html
 
Great job Chumpy! We have had to navigate private insurance and all the billing/pre approval /denial/appeal.nightmares. Now we are starting with the VA system. You have to keep pushing and be the squeaky wheel to move things along. It is.incredibly frustrating and emotionally draining but you dont get anywhere unless someone does it . But remember, it all.doesnt have to be done in a day. Be kind to yourself and give yourself a.break. There may be days when you have amassive to do list and mentally you need to play hooky......do it. This is a long and wild ride you are on....the VA will really be your ticket.
 
I saw some thread about a PALS that started smoking again after diagnosis, and while we normally dont think smoking or drinking is good, I wonder if with ALS if it gives someone some control it isnt the lesser of two evils.
Its not like we are going to have a long healthy life anyway.
I do hope things get better for you. Being a vet really helps with this disease.
I remember as a teenager hoping my draft number wasnt called for Vietnam-now I wish it had been.
 
Chumpy - I'm so sorry that you & yours are going thru this! My heart goes out to you. I'm a veteran too, and I can say from experience that the VA will at least set you up financially with follow-up visits every 90 days or so (Unfortunately, a repeat of your 1st clinic visit!) and will usually provide anything you need including Visiting Angels -type assistance. I wish you every help you need.
 
Like Greg wrote, drag him to your PVA rep or ask the PVA rep to do a home visit. The VA has extended my life and usefulness. He served; he deserves the benefits of Service Connected 100% disability they will give him. Your financial challenges are pretty much over.

My local VA is head and shoulders above the University or commercial medical practices.

Go for it!
 
Thank you everyone for all of your replies! I have printed off the information from the different links..... I am on it!
 
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