geronimojoe85
Master
- Nov 16, 2009
- 3,716
- 48
Ladies and gents, I know I've been sadly missing from these boards for the last few years. While I have lurked a bit I haven't been to any shoots or done much shooting at all for that matter, and while I don't apologize, I do believe some explanation is merited.
I want to address first off that this is not a pity post, or anything like that. Just kind of maybe wanted to raise a little awareness and tell my story of the last few years.
A while back my father was diagnosed with ALS (amyotrophic lateral sclerosis). This started out as him having trouble writing, and progressed from there. By the time he was "officially diagnosed" he had lost the use of his right arm entirely. There were a few dark days early on, and we are even still coming to grips with the fact that ALS is terminal. I've heard it described from others as "death by a thousand cuts" and the best I can describe caring for him is watching someone die by a thousand cuts. This recently changed dramatically but I'll get to that later.
With every call or visit I watched as he essentially withered away. His wife whom I have the greatest respect for (more and more each day, in fact) was forced into the primary caregiver position, doing more and more as he could do less and less. I don't have to tell you that this was absolutely heartbreaking for all of us.
Unfortunately, as things progressed, my stepmother became less able to move him around as his mobility dwindled. Often times he would fall and need to enlist the help of the local ems to right him, as I live a good two hours away. I can't imagine how she felt as things were getting to be more than she could handle. Luckily he never hurt himself more than a few bumps and scratches. I always feared that I'd get a call that he had a broken hip/arm/skull/whatever. Knowing that he was on a fixed income, even with Medicare he'd surely be bankrupted by medical costs, if not by an ER visit by the eventual complications of his condition.
A few weeks ago while talking her sister, my stepmother learned of a friends husband who had recently passed from ALS. While talking with her and comparing notes she learned that the VA had an ALS clinic in Indianapolis. Being that my father is a Vietnam veteran and hearing how well her friends husband was taken care of, we went for a Hail Mary and made the calls. A few calls later he had an appointment scheduled.
Now, I'm no stranger to the VA and I've had a few experiences with how bad of a bureaucratic nightmare it can be. In fact we had tried going through the VA for a second opinion on his diagnosis and paperwork just kind of discouraged any further effort. Of course, hindsight being what it is, I wish we had pursued it more, but again, that's the beauty of hindsight.
This is where I'd like to make a point of saying, if you are a veteran in need of medical care please go to your nearest VA hospital and ask about benefits. Yes, the paperwork sucks sometimes, and yes, you might need to wait for an appointment, but the people at the hospitals will do everything that they can for you, especially the hospital in Indianapolis. When I needed medical benefits for regular run of the mill illness, I went to Hines in Chicago, and while it didn't happen very fast, I was taken care of.
If you are a veteran who has ALS you will qualify with a 100% service connected disability. Again, ALS qualifies as 100% service connected disability. Regardless of when, where, or what you did for Uncle Sam, an ALS diagnosis is 100% service connected. We are 2-4 times as likely as anybody else to be diagnosed with ALS several studies have shown this. As a result, an ALS diagnosis is 100% service connected. (Did I mention that ALS is a 100% service connected disability)
Our meeting with the benefits coordinator had me in tears. I was prepared for a fight with her, I was juiced up and ready to go with several prepared replies to things like, "well there's no proof that your father was in an area where agent orange was being used" or "fill out these papers and call this number" or "we lost his paperwork" or "he doesn't qualify for reason XYZ." When we sat down with her she started out by saying that the VA will be making my dad as comfortable as possible for the rest of his life, and that his wife and I are no longer in it alone.
She began listing off what he qualified for and when she mentioned respite care for my stepmother I started crying(manly tears of course) and trying to hide behind him. Imagine if you will a 6'2, 300lb steelworker hiding behind a now frail old man in a wheelchair, while trying to wipe his eyes and choke back tears silently, I'm sure it was a sight to see. Of course for the benefits coordinator I'm sure she sees it more often than she'd like. Talk about a weight lifted, though. Sometimes you don't realize how heavy the weight is that you carry until you don't have to anymore.
The next visit was an eye opener. We checked in and were shown to our room where respiratory specialists, dietitians, neurologists, etc. all came to us. We left that day with a pile of equipment on order and an even better outlook than before. The quality of the care he received, in my opinion, was second to none, and was the direct result of the quality of the people providing it. I simply can't say enough good things about them.
Ok, PSA time:
The ALS association has a ton of resources for people with ALS and their caregivers. The VA has a ton of resources for veterans with ALS. Thanks to the ice bucket challenge, there are more resources than ever for people with ALS and their caregivers. If you or someone you love is suffering with ALS, please look up these resources. You don't have to go it alone.
Also I want to mention, the ALS association of Indiana is having their annual ALS walk this Saturday, 24SEP2016 in Indianapolis. See their website for details.
I know that there will be rough days ahead.
I know where this road goes.
But it is of great comfort to know that we are not in it alone.
I want to address first off that this is not a pity post, or anything like that. Just kind of maybe wanted to raise a little awareness and tell my story of the last few years.
A while back my father was diagnosed with ALS (amyotrophic lateral sclerosis). This started out as him having trouble writing, and progressed from there. By the time he was "officially diagnosed" he had lost the use of his right arm entirely. There were a few dark days early on, and we are even still coming to grips with the fact that ALS is terminal. I've heard it described from others as "death by a thousand cuts" and the best I can describe caring for him is watching someone die by a thousand cuts. This recently changed dramatically but I'll get to that later.
With every call or visit I watched as he essentially withered away. His wife whom I have the greatest respect for (more and more each day, in fact) was forced into the primary caregiver position, doing more and more as he could do less and less. I don't have to tell you that this was absolutely heartbreaking for all of us.
Unfortunately, as things progressed, my stepmother became less able to move him around as his mobility dwindled. Often times he would fall and need to enlist the help of the local ems to right him, as I live a good two hours away. I can't imagine how she felt as things were getting to be more than she could handle. Luckily he never hurt himself more than a few bumps and scratches. I always feared that I'd get a call that he had a broken hip/arm/skull/whatever. Knowing that he was on a fixed income, even with Medicare he'd surely be bankrupted by medical costs, if not by an ER visit by the eventual complications of his condition.
A few weeks ago while talking her sister, my stepmother learned of a friends husband who had recently passed from ALS. While talking with her and comparing notes she learned that the VA had an ALS clinic in Indianapolis. Being that my father is a Vietnam veteran and hearing how well her friends husband was taken care of, we went for a Hail Mary and made the calls. A few calls later he had an appointment scheduled.
Now, I'm no stranger to the VA and I've had a few experiences with how bad of a bureaucratic nightmare it can be. In fact we had tried going through the VA for a second opinion on his diagnosis and paperwork just kind of discouraged any further effort. Of course, hindsight being what it is, I wish we had pursued it more, but again, that's the beauty of hindsight.
This is where I'd like to make a point of saying, if you are a veteran in need of medical care please go to your nearest VA hospital and ask about benefits. Yes, the paperwork sucks sometimes, and yes, you might need to wait for an appointment, but the people at the hospitals will do everything that they can for you, especially the hospital in Indianapolis. When I needed medical benefits for regular run of the mill illness, I went to Hines in Chicago, and while it didn't happen very fast, I was taken care of.
If you are a veteran who has ALS you will qualify with a 100% service connected disability. Again, ALS qualifies as 100% service connected disability. Regardless of when, where, or what you did for Uncle Sam, an ALS diagnosis is 100% service connected. We are 2-4 times as likely as anybody else to be diagnosed with ALS several studies have shown this. As a result, an ALS diagnosis is 100% service connected. (Did I mention that ALS is a 100% service connected disability)
Our meeting with the benefits coordinator had me in tears. I was prepared for a fight with her, I was juiced up and ready to go with several prepared replies to things like, "well there's no proof that your father was in an area where agent orange was being used" or "fill out these papers and call this number" or "we lost his paperwork" or "he doesn't qualify for reason XYZ." When we sat down with her she started out by saying that the VA will be making my dad as comfortable as possible for the rest of his life, and that his wife and I are no longer in it alone.
She began listing off what he qualified for and when she mentioned respite care for my stepmother I started crying(manly tears of course) and trying to hide behind him. Imagine if you will a 6'2, 300lb steelworker hiding behind a now frail old man in a wheelchair, while trying to wipe his eyes and choke back tears silently, I'm sure it was a sight to see. Of course for the benefits coordinator I'm sure she sees it more often than she'd like. Talk about a weight lifted, though. Sometimes you don't realize how heavy the weight is that you carry until you don't have to anymore.
The next visit was an eye opener. We checked in and were shown to our room where respiratory specialists, dietitians, neurologists, etc. all came to us. We left that day with a pile of equipment on order and an even better outlook than before. The quality of the care he received, in my opinion, was second to none, and was the direct result of the quality of the people providing it. I simply can't say enough good things about them.
Ok, PSA time:
The ALS association has a ton of resources for people with ALS and their caregivers. The VA has a ton of resources for veterans with ALS. Thanks to the ice bucket challenge, there are more resources than ever for people with ALS and their caregivers. If you or someone you love is suffering with ALS, please look up these resources. You don't have to go it alone.
Also I want to mention, the ALS association of Indiana is having their annual ALS walk this Saturday, 24SEP2016 in Indianapolis. See their website for details.
I know that there will be rough days ahead.
I know where this road goes.
But it is of great comfort to know that we are not in it alone.
