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Karigav

Active member
Joined
Oct 10, 2010
Messages
33
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
Ky
City
ky
Hello all! I have been reading the forum and decided to join because I feel the inevitable is about to happen. My dad started with an unusual pain in his shoulder in February and now has atrophy in both arms, can no longer write, has lost 60 pounds, and is falling all of the time. His most recent symptom is shaking of the hands and jaw. We finally got him talked into going to the va after running around and shopping for MRIs and seeing a chiropractor( who says he has parsonage turners syndrome) and a neurologist that is doing all kinds of tests, and in July threw the possibility of ALS at us. My dad is a very strong person, and never wantsanyone to worry, so I have been wondering if his fear is blocking him from hearing everything these doctors have been saying. So I decided to go with him to his first appointment at the va this week and I want to know what kind of questions I should ask. I love my dad so much, and the thought of losing him bogs me down everyday! I plan on sharing the caregiving with my step mother and my husband (who is a paramedic). In my heart of hearts, since the mention of ALS in July has been brought to the table, watching his decline, and researching every neuromuscular disorder discovered, I am sad to think the only answer is ALS. He has had a ncv test, that the doctor was really concerened about, but I think that because dad has been paying out of pocket, they have not moved forward with more. The va will be a good start I think. I just need advice for my scattered brain at the moment. His appointment is on Thursday. Thanks to all and my heart and prayers go out to each and everyone of you who are fighting ALS and for your caregivers.
 

sadiemae

Very helpful member
Joined
Sep 20, 2009
Messages
2,397
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
NV
City
Reno
Welcome, and yes the VA will be a big help. Feel free to ask us any questions.
 

tdamess

Very helpful member
Joined
Jul 29, 2009
Messages
1,287
Reason
Loved one DX
Diagnosis
07/2009
Country
US
State
ma.
City
halifax
there is a post to ask questions and someone will come soon and tell you , it is my son who has it so i am not good for the answer you need .. i do know to ask about the emg test , fvc breathing test that should be done every 3 months , and is it a digonse of a.l.s. if it is have him apply for benifits right away sorry this is happening to your dad and a few more people will be along soon with better question for you to ask wishing you the best
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Kari,

I'm sorry for your father's condition. I am being seen by the V.A. and my advice would be to ask simple, direct questions. The first step I'd take is to make sure notes from previous doctors have been forwarded in advance. This will give the V.A. some history and will better equip them.

As far as the questions, I'd ask if the doctor has any idea of what has been ruled out and what the other doctor(s) may have suspected this to be.

I'd ask how the V.A. might assist with wheelchairs and other aids, even a ramp for access into your father's home. I'd ask about medications to help with pain or muscle spasms. Another good question would be what to expect during the diagnostic process in the way of testing and how soon until the next appointment.

I'd also ask how to get in touch with someone that can assist with filing any needed forms the V.A. may require.

Best of luck to you and your father!
 
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Karigav

Active member
Joined
Oct 10, 2010
Messages
33
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
Ky
City
ky
Thankyou all for the posts! Zaphoon, those were some things that I have not even thought of yet, so I really appreciate the heads up. Sadie and TSS, thank you too.. I see that you both are in a similar situation as myself and can understand my loss of self at the moment. I am just trying to come to terms with it all and hope for the best. I am proud of my father for opening up and letting me be a part of his journey. I will update as soon as I know more and if anyone can think of anything else that may be helpful to know, I appreciate the input in advance! Thanks again!
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,560
Reason
Lost a loved one
Diagnosis
07/2009
Country
US
State
CA
City
San Jose
Also... get 2 notebooks.... a big one with multiple sections and a pocket for each section to help keep track of paperwork.. medical, va, alsa, etc. Get a smaller one that you can take to appointments with you. Take notes. (our neuro would actually take mine and write notes in it himself. ) They will help you form questions that you can ask at the next appointment or call and ask later.
 
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