Did anyone watch the new TV show "Homeland Security" the other night? At the end, they had a story about one of the Customs and Border Patrol agents who had to stop working up in Buffalo because he was diagnosed with ALS, and they showed a huge fundraiser they had for Jay. I had seen a request for donations for Jay on Facebook too. This was more exposure on national television for ALS.
A couple I know -- the husband has ALS -- has been resisting the PEG feeding tube. Now, he isn't eating enough because it's too exhausting for him, and it already takes him two hours to eat whatever he is eating. They are thinking about the feeding tube now. The problem is that he is so progressed that his breathing is weak, which makes it more risky to do the procedure. This scares them, although there are certain accommodations that can be made. I was advised early on to get the PEG tube even before I needed it, as I was advised about getting equipment before I needed that too. So I got my PEG in 2005 way before I needed it. I got good advice, and I'm glad I followed it.
One piece of advice I didn't follow was to put on my Bi-PAP for a few hours during the day, especially for naps. I started doing that this week, and I must say it makes a nice difference. When I use it, I am less likely to doze off during late morning, and it gives me a little more energy. I guess I was resistant because I keep hearing that right before the end of life, PALS [people with ALS] are wearing the Bi-PAP 24/7, and when that fails to help, they have to make that all-important decision of whether or not to get the tracheostomy and go on mechanical ventilation. So I viewed use of the Bi-PAP for anything over and above overnight sleep time as a step closer to the end. But, in reality, I have only been sleeping about 6 or 7 hours, and should really use the Bi-PAP more hours anyway. And, sitting around wheezing and/or short-of-breath because I was resisting the Bi-PAP was a stupid and uncomfortable option. My seatbelt was busted for several weeks, and finally repaired yesterday. While the mechanic was here, I asked him to adjust the footrests so they don't keep falling down.
A little advice about credit cards and loans. Several months ago, I negotiated with one of my credit cards to take my old debt and pay a lump sum less than the balance, and get rid of the card. Well, they graciously let my bank know, and the bank cut down my credit limit on my overdraft coverage [for which I was never delinquent, by the way]. I don't really care because I planned earlier last year to never again use the overdraft coverage and pay it down. However, I learned that when you are delinquent on one debt, they can inform your other creditors, even if you have had a pristine history with all your other creditors. So know that these credit card companies are getting very devious in this recession!
The VA has listed ALS as a presumptively compensable illness, meaning there may be an association between it and military service. This is an issue that was the topic of ALSA advocacy last year in Washington DC, so bravo for ALSA.
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Thursday, January 29, 2009
Update January 29, 2009
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I retired from the Navy, and the VA has said that will treat ALS as a service connected disease.
I have applied for the VA Benefits but their paperwork is like trying to swim upstream in the mud.
Nevertheless I have applied..so I will see what happens.
I hope you have applied for Social Security Disabled.
Take care, I love your blog...keep i up and my best wishes for you.
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