overwhelmed
- Thread starter 3Grandboys
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affected
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My heart breaks welcoming you here.
My Chris had Bulbar onset ALS/FTD.
By the time he was diagnosed with ALS he was very typical progression and we did not go for a second opinion. I think if you can get to another ALS specialist it is worth it.
If I had not been talking to other CALS dealing with FTD I don't know how I would have coped with the behavioural issues, so I'm glad you are reaching out for support right now.
It is indeed very scary and overwhelming, this is as big as it gets. We can help, you are in the worst part now trying to come to terms with the shock of the diagnosis. Be kind to yourself, the worst of the waves will pass over the next month or 2 and you will find your way into the new life situation. Sounds glib, but it's really true. Just a day at a time, don't try to take it all in at once, take little steps and breathe.
My Chris had Bulbar onset ALS/FTD.
By the time he was diagnosed with ALS he was very typical progression and we did not go for a second opinion. I think if you can get to another ALS specialist it is worth it.
If I had not been talking to other CALS dealing with FTD I don't know how I would have coped with the behavioural issues, so I'm glad you are reaching out for support right now.
It is indeed very scary and overwhelming, this is as big as it gets. We can help, you are in the worst part now trying to come to terms with the shock of the diagnosis. Be kind to yourself, the worst of the waves will pass over the next month or 2 and you will find your way into the new life situation. Sounds glib, but it's really true. Just a day at a time, don't try to take it all in at once, take little steps and breathe.
krnNdug
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- May 18, 2014
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- 02/2014
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I would highly recommend a 2nd opinion. There are 3 ALS clinics here in the Phoenix area. I go to the MDA sponsored one at Barrow Neurological at St. Joe's. They are terrific. I know people who go to the clinic at Mayo in North Phoenix. They are great as well from the people I know who go there. If you come up to Phoenix and want to meet I would be happy to. My wife would also if she isn't working.
I have found a lot of good information in this forum. I think it is harder on caregivers, like you. As to watching TV all day, I do that to. Tends to distract from the day to day boredom and not dwelling on things. It is mostly background noise for me.
I was just interviewed by the local ABC station. We talked for a long time so what was shown is only a very small portion. Even the reporter cried during the time at our home. Arizona ALS Chapter expecting big turnout for weekend walk - ABC15 Arizona
Not sure if the link can be posted. We also had a PALS interviewed yesterday on the CBS station (ALS Association of Arizona provide critical care services to pat - CBS 5 - KPHO) and he did a much better job and much longer. Todd is in our support group.
I would strongly suggest going to the support group meetings. Kim Hughes leads them and is awesome.
I have found a lot of good information in this forum. I think it is harder on caregivers, like you. As to watching TV all day, I do that to. Tends to distract from the day to day boredom and not dwelling on things. It is mostly background noise for me.
I was just interviewed by the local ABC station. We talked for a long time so what was shown is only a very small portion. Even the reporter cried during the time at our home. Arizona ALS Chapter expecting big turnout for weekend walk - ABC15 Arizona
Not sure if the link can be posted. We also had a PALS interviewed yesterday on the CBS station (ALS Association of Arizona provide critical care services to pat - CBS 5 - KPHO) and he did a much better job and much longer. Todd is in our support group.
I would strongly suggest going to the support group meetings. Kim Hughes leads them and is awesome.
3Grandboys
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- Oct 7, 2014
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- 10/2014
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Yes, Az girl, the first diagnosis is from Dr. Rapcsek neurologist from the u of a medical school! If you have heard of him, any impression?
Anyone in particular at Barrows? Dr. Rapcsek suggested to go to Mayo to his colleague. Thanks so much!
Anyone in particular at Barrows? Dr. Rapcsek suggested to go to Mayo to his colleague. Thanks so much!
laurel
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Doug well done interview--as was Todd's. Very poignant and very honest. All the best to you and your family.
Laurel
azgirl
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3Grandboys- I see Dr. Scherer at U of A Medical Center, south campus. It is important that you see a neuromuscular specialist, not just a neurologist, when getting a diagnosis of ALS. I do not know of Dr. Rapscek or what kind of specialist he is.
I believe the 3 ALS clinics in the Phoenix area are all very good, so you can't go wrong with any of them. I was going to pick the MDA sponsored one at Barrow Neurological at St. Joe's, since it had a couple clinical studies that looked like good choices.
I actually skipped the second opinion as my EMG results and other symptoms in the clinical exam were so classic for ALS. My progression over the past year also points to ALS and nothing else (unfortunately).
So sorry that you and your husband have entered our world here. Lots of good, knowledgeable, caring people here to help you along the way.
-Kay
I believe the 3 ALS clinics in the Phoenix area are all very good, so you can't go wrong with any of them. I was going to pick the MDA sponsored one at Barrow Neurological at St. Joe's, since it had a couple clinical studies that looked like good choices.
I actually skipped the second opinion as my EMG results and other symptoms in the clinical exam were so classic for ALS. My progression over the past year also points to ALS and nothing else (unfortunately).
So sorry that you and your husband have entered our world here. Lots of good, knowledgeable, caring people here to help you along the way.
-Kay
Grumpy'sWife
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3 Grandboys, so sorry you have to be here but you will find such great support here. Please make sure you contact the PVA as was suggested earlier, they will be a wonderful resource in navigating the VA for benefits, equipment etc.
Take one day at a time, and ask for help (this is still tough for me!).
Hugs
~Kaye
Take one day at a time, and ask for help (this is still tough for me!).
Hugs
~Kaye
zipcass
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- Oct 2, 2012
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- CALS
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- Upper Black Eddy
My husband has had ALS for 16 years. Our children are 12 and 14. I worked as a physical therapist full time for 12 of those years. Definitely hard! Once my husband got veterans benefits I was able to stop working. It takes a lot of time to fill out all the VA forms but it is so worth it to get all the benefits! Being his advocate is a big job. I am now his caregiver 12 hours/day. Rely on PVA and the ALS association for info.
3Grandboys
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- CALS
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- 10/2014
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PVA said since no agent orange contact nor vietnam assignment (he was vietnam era, but not to vietnam) my vet husband would not qualify for anything that they could help me with. So dead end there. I am disappointed since so many of you praised how PVA could help.
Your comments are oh so helpful and I appreciate your taking your time to respond!
Still so unreal!
Your comments are oh so helpful and I appreciate your taking your time to respond!
Still so unreal!
dalvin
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Definitely get another rep, even if you have to go over his head to the next higher office. With a diagnosis of ALS, it doesn't matter when, where or which branch of service it is considered to be service connected as long as he was on active duty as Sadiemae stated
Graybeard
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- Sep 24, 2014
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- 12/2013
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That's so wrong! Did you tell him you had an ALS diagnosis?
I suggest you email EnriqueC at pva dot org. He got me aboard in two weeks. I was drafted in 1965, and spent my time in Germany.
GB
I suggest you email EnriqueC at pva dot org. He got me aboard in two weeks. I was drafted in 1965, and spent my time in Germany.
GB
MaxEidswick
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- 08/2013
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>PVA said since no agent orange contact nor vietnam assignment (he was vietnam era, but not to vietnam) my vet husband would not qualify for anything that they could help me with.
that is total bs!
contact Gregory Treacy <[email protected]>
that is total bs!
contact Gregory Treacy <[email protected]>
cheerleader
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3grandboys, that rep was so wrong! My hubby only served in the U.S. and gets full benefits. Since they don't know why people who served are 60% more likely to have ALS, anyone who served two years qualifies for the benefits. Good news to accompany a horrible diagnosis! That PVA rep should be fired! Please report him/her, as they obviously don't know the rules!
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