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Oct 2, 2009
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23
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Loved one DX
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US
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tx
Hi all. I've been reading over the past week or so since we learned on the 1st of a possible ALS diagnosed for my dad. We have been really blessed to have found a doctor who ran the gamut of tests to make sure he was making the proper diagnosed and we do feel confident, based on dads symptoms and the progression etc, lack of response from IVIG (thus far) and ruling out other etiology that it is in fact ALS.

A little background, he was c/o back pain in June with weakness and difficulty ambulating since July, shortness of breath started end of September with me flying out from NYC 9/27 and him being in the hospital since 9/28. Prior to this hospitalization, we had assumptions that he had some short of neurological issue going on but with socialized medicine (he's getting county insurance) they were very slow to get him appointments with clinics and he has been fighting to get an MRI since June. It wasn't until we fought to have him admitted (with the shortness of breath) that they finally did scans and an EMG and found the motor neuropathy. They said it was an axon issue, and the neurologist described it as a frontal motor neuropathy. At any rate, it's affecting his breathing which concerns me since this seems progressive. The doctor is saying that he actually caught it rather quickly as most go at least a year before a diagnosed is made.

His left leg is the worst with the left arm following. He's unable to ambulate very far without fatigue and needs a rolling walker. He has shortness of breath with carrying a conversation that is worth with activity. He had 5 days of IVIG at 30gms a dose (I believe) to rule out MMN, which another doctor thought it *might* be since there was no bulbar activity during the EMG.

So, where am I going with this. I guess I just wanted to know if anyone can relate to our symptoms/situation etc.

Also, I had some questions:

1) we asked the doctor for a prognosis as my father wants to know how long he has and the doctor couldn't give us one, but said to get his things in order.. (not very encouraging). I'm wondering if anyone can give us some guideline based on the progression and symptoms as to what we can expect/progression etc from here on out.

2) they want to discharge him rather soon, maybe tomorrow. The doctor said he would go to rehab for 4-6 weeks, but the social worker came in later and said he will only qualify for 1-2 weeks in their inpatient skilled nursing which is NOT rehab. Because he has county insurance, I feel at a loss as to what to do.

3) how can they discharge him home with his respiratory issues? Doesn't he need bipap? He's also complaining of the morning headaches and a few times the aids have reported possible morning confusion (that dad doesn't recall).

4) due to the progression, do you think it would be appropriate to ask for a TERI expedition of his SSD? The hospital said they do not assist with the forms but that an agency they have could (for a fee). is that typical? I always assumed the social worker handled these things.

5) based on his symptoms, what are some things we need to be thinking about regarding the home and equipment etc for now and the future?


Phew, I think that's it as of now. If someone can help with any or all of these questions/concerns. I would be so grateful.

-Lissa
 

peter57

Distinguished member
Joined
Jun 21, 2009
Messages
429
Reason
DX UMND/PLS
Diagnosis
10/2008
Country
AUS
State
S.A.
Hi Lissa, welcome to the forum,

All i can do is welcome you to the forum as there are others much more informed, than me on the forum that will be able to help you with your questions. (when they wake up)

I am sorry we had to meet this way but they are a great bunch of people here.

In the meantime please surf the forum as there is a lot of info here for any situation and if you cannot find an answer for a question, just ask it and i am sure you will get an answer.

Cheers
Peter
 

LauraW

Distinguished member
Joined
Sep 27, 2008
Messages
419
Reason
CALS
Diagnosis
09/2008
Country
US
State
New York
First, contact you local ALS/MDA office. As far as the progression...no one knows. Everyone is diferent. Very importantly is that you want to stay ahead of the disease. Which means, yes he should get a bipap machine. I se that you are from Texas...is that where your Dad lives? You should try to get him to an ALS Clinic. My Mom goes to Columbia University in NY. Your local ALS chapter can answer a lot of questions for you. Does your Dad have medicare or medicaid? If not, you should apply for it. I am not sure about how it works in other states though. Also, this forum has a lot of info. Good luck to you...you are not alone. Fel fre to ask, vent, whatever. We are all here for you.
 
Joined
Oct 2, 2009
Messages
23
Reason
Loved one DX
Country
US
State
tx
First, contact you local ALS/MDA office.
-TY, I made the call just a few mins ago

As far as the progression...no one knows. Everyone is diferent. Very importantly is that you want to stay ahead of the disease. Which means, yes he should get a bipap machine.
-Fighting the docs now. They want to send him home with a cpap, as his county insurance does not cover a bipap... this seems like the wrong machine for him. I'm waiting for the alc clinic (of northern texas) to call me back to see if they have something we can rent/loan.

I se that you are from Texas...is that where your Dad lives? You should try to get him to an ALS Clinic.
-He lives in Mansfield, TX. I'm a registered nurse from NYC and have been trying to get him to come back with me for at least a second opinion, however that is a huge feat and a long story/history behind why that would be virtually impossible.

My Mom goes to Columbia University in NY. Your local ALS chapter can answer a lot of questions for you. -How do you find Columbia? Is this something I should really push for him, to be in NYC for treatment compared to TX?

Does your Dad have medicare or medicaid? If not, you should apply for it.
-Social worker is coming today to start the process, she was not aware of the 24month waiver or that the TERI would apply but she seems willing to research and file the necessary paperwork. It is a little daunting that she isn't familiar with it so I would like to gather as much information as possible in order to assist her in this process.
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,560
Reason
Lost a loved one
Diagnosis
07/2009
Country
US
State
CA
Glad you contacted ALSA. If you are at all uncomfortable with the social worker you are working with, contact ALSA again, because they have LMFTs and Social Workers that DO know about the ins and outs of doing all the paperwork surrounding an ALS diagnosis.
 

Wynn

Member
Joined
Jun 12, 2009
Messages
29
Reason
DX UMND/PLS
Diagnosis
10/2008
Country
US
State
TX
You should try to get him to the University of Texas Southwestern Medical Center in Dallas--that's the medical school (that's where I go). The number for the MDA/ALS Clinic is 214-645-8000, fax 214-645-8802. How old is he?
Wynn
 
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