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3Grandboys

Member
Joined
Oct 7, 2014
Messages
22
Reason
CALS
Diagnosis
10/2014
Country
US
State
AZ
City
Tucson
My husband was just diagnosed with ALS-FTD and it is so scary and overwhelming and just oh so sad. What do you think about seeking a second opinion? Anyone else out there working as a health care provider seeing my own patients and now caregiving and advocating for husband? It is all so overwhelming to comprehend! Thanks for your support!
 
So sorry. Yes to second opinion! Even if the first was from an ALS specialist. If you have not been to Barrow yet that likely should be next stop. Is he a vet? Many benefits if so. Read the stickies at the top of the general discussion forum for info. I think there are several caregivers who are in healthcare. Read also in the caregivers and FTD sections there will be a lot of information and support there
Very sorry you have to be here but welcome. Remember to breathe and take one day and a time
 
My husband is newly diagnosed with ALS-FTD and I am so overwhelmed where to start. I am trying to read everything I can, but not too much out there. Both diagnoses seem like a double whammy, so much to deal with. He has changed so much. I noticed the personality changes first (I thought he was just being a jerk), then the cognitive problems, and lately the weakness. It is just all so sad. I am a health care provider and I wish to maintain my work as well as advocate and caregive for my husband. So far he stays home every day watching TV without the sound on (very strange) and I feel so badly leaving him alone all day while I work. He was fired from a very easy retirement job a month ago. What a comfort knowing there are so many of you out there figuring all of this out. Bottom line I am totally in shock with this tragic diagnosis of ALS-FTD. Thank you.
 
Oh, I am so sorry but you are in good company. Hope he is a veteran, as there are many benefits to help you. You'll get support here- and after you can process all these changes, it will get a LITTLE easier. No doubt, every day is a challenge.
Hang in there. Donna
 
I merged these threads because they are asking the same questions. I think everyone who reads on FTD will read here too and I left a redirect anyway. Two threads will lead to fragmented and duplicate discussions
 
yes, my husband is a veteran and will get an appointment with a social worker at the local V.A. medical center to understand range of services. Any place other than the V.A.?
 
Read the sticky in General discussion on VA benefits also he can get ssdi if not already on ss. Contact the PVA for help with VA benefits
 
My heart is going out to you (3Grandboys), your husband and extended family! My prayers are with you all.
 
Definitely talk to the pva rep (paralyzed veterans). They can get things rolling and approved quick, as little as 2 weeks. An appointment might help but you can also just walk in without one. Usually have an office in the va hospital somewhere
 
Welcome to Heartbreak Hotel.

I second what Dalvin said. PVA.org are second to none.

GB
 
any research studies on ALS-FTD in the country where I could take my husband for a second opinion?
 
UCSF was doing a study that included ALS/ FTD I know. Look on their website in the center for memory and aging. There is also a study at NIH but that is specific to the genetic defect C9ORF72.
My experience with clinical studies though is that they are not the place where you will get second opinions. Some of them will share the findings of tests with you and your physicians others do not. None have made any recommendations to me. And they are very exhausting. Their focus is, of course, data gathering rather than patient care.
Is there a reason not to pursue a second opinion in the usual way?
 
If you are on F B, we hav a great caregivers group, and also someone started a FTD ALS group. Do a search for ALS CAREGIVERS
 
If your first opinion was from university of AZ medical center, then you could go up to Barrows in Phoenix for second opinion. I've found the team at U of A to be quite helpful.
 
It took me a while to get over the shock of having a disease that I never heard of, over a year later and I'm still here. Prayers for you and your family.

Janie
 
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