DeanCarl Posted January 16, 2004 Share Posted January 16, 2004 My VA doctor called me this afternoon. As I more than half expected the VA turned down my doctor's request for a motorized mobility device (i.e. scooter). The reason stated was that I can walk at least 200 feet . Sure I can walk 200 feet! I can walk MORE than 200 feet. Of course when I get done walking 200 feet I'm gasping for air like a stuck pig (even with my oxygen going full tilt), my legs are the consistancy of stretched out rubber bands, and I can look forward to at least two days of sitting around doing nothing more strenuous than reaching for the tylonal bottle! I have to admit my doc gave it all he had to get me the scooter. And he's going to try again, but I hold very little hope for it going through. The VA, like every other goverment (and many private) conglomerates I've delt with over the years has its rules and regulations and most of the people who work for these types of places are bean counters who can't see past the rules and be aware of the person needing their help. I do have a couple of letters drafted and ready to send out to my various reprsentatives in the government. I'll get busy this weekend and finalize those and get them sent out along with e-mails and maybe a couple of phone calls. There is also the option of trying to aquire a scooter myself. I can't afford a new one but I might be able to squeeze the budget enough to get a used one somewhere. That'll take a LOT of squeezing though. However this goes, by the time I get a scooter I'm not gonna be able to get out of bed to actualy USE the thing! I did get my smaller portable oxygen system today. It's nice. No more hauling around a big ol' bottle on wheels. This is a little bottle that sits in a case and has a strap that goes over the shoulder. It's nice to be able to go out and have BOTH hands free! Dean Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted January 16, 2004 Share Posted January 16, 2004 Dean, I am sorry you are having such a tough time dealing with the VA. I hope your letters and phone calls work. Prayers and good thoughts being sent your way. God Bless, MO Quote Link to comment Share on other sites More sharing options...
J.C. Posted January 16, 2004 Share Posted January 16, 2004 Dean, Hope your letters bring you good answers and you get a motorized wheelchair or scooter. You got your portable oxygen so prayers going for the rest. J.C. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted January 16, 2004 Share Posted January 16, 2004 Dean, Congrats on the new O2 system. The small M-Tank is a lot easier to haul around than the E series. I'm glad you are writing to your government Reps. The way our Government treats our Veterans is one of my big gripes in life. Is there a way for your Doc to document how low your Oxygen Saturation levels drop when you walk? I know some Pulse Oximeters have printer capabilities. Your oxygen sat level is what they are supposed to be basing their decisions on, not the distance. Keeping my fingers crossed that you get a scooter sooner rather than later. Quote Link to comment Share on other sites More sharing options...
LindaMRG Posted January 16, 2004 Share Posted January 16, 2004 Dean, I remember about 10 years ago when my grandmother had multiple myeloma she told me the Cancer Society would give her $500 if she needed it, I cant remember if she took it and dont know if they still do that but it might be worth looking into. Also, after some web surfing, I came up with these sites, not sure if it will help but thought Id try: http://www.spinlife.com/zine/linksget.cfm?catid=671 http://www.petesportal.net/bookmed.htm (scroll down to disability related sites) http://www.scooterlink.com/LinkDisplay. ... gory_id=21 Also, what about checking into your local Social Service office and seeing what they can do for you. Quote Link to comment Share on other sites More sharing options...
Rosie Posted January 16, 2004 Share Posted January 16, 2004 I'm so sorry dean. I was going to suggest the same things the others did. Is there a possibility that the cancer society has some sort of used equipment that you can use for free? I know it's a long shot, but maybe someone else knows somewhere. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted January 16, 2004 Share Posted January 16, 2004 Dean I don't know about your part of the country but here on the east coast I know that some veterans organizations, i.e. VFW help people getting motorized wheelchairs, etc. I have a friend who has MS and they got him a motorized chair, worth looking into, also there are some thrift shops who give handicap equipment to those who need them. There is one in a city near me that takes in all types of equipment and refurbishes it and gives it out free of charge, not much help to you but maybe there is something like that where you live. Bess B Quote Link to comment Share on other sites More sharing options...
Snowflake Posted January 16, 2004 Share Posted January 16, 2004 Dean, Just a thought: Do you receive the request for funding from the Disabled American Veterans - the ones that send address labels and cards? Maybe THEY can help get you into a scooter ASAP or let you know where to begin the fight. Here's their homepage: http://www.dav.org/ Will continue racking my brain for "outside the box" ways to get out of the govenment bureaucracy you seem stuck in... Becky Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted January 16, 2004 Share Posted January 16, 2004 Dammit, Dean, when will they learn that you don't ask for something like that because you want to drag race? Good point about O2 sat, THAT should make your case. Or else just walk fast and collapse about 2/3 way through. Whatever it takes. Stupid system. I'm glad you have the smaller oxygen tank, I remember the E series, that was a bear to carry around, I've seen people with the smaller ones, they look easy to deal with. If the E series is good for 4 hrs at 2L/hr, how much time do you get out of the smaller ones? I'd really like to know... Anyway, God bless you for keeping a sharp wit about you, and a gold heart in the midst of this wrestling match with the beast. Warmly, MaryAnn Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted January 16, 2004 Author Share Posted January 16, 2004 Thanks, folks, for all the ideas and resources. I'm turned all that over to the wife and she's going to do the research today. She's much better at it. More patient than I am and a lot less likely to go off on people when they are just doing what they are told to do . Our analogy for how we are different in dealing with things is two people trying to break a rock. A BIG rock. I'm the one who finds the biggest hammer I can and hits that darn rock as hard as I can. Works well a lot of the time, but I can only hit it a few times before I get tired and frustrated. Gay, on the other hand, picks up this little tiny hammer and starts pinging away at that rock. Doesn't seem to do much at first ... but she pings away FOREVER! Never stops. I've seen her ping away at a "rock" in our lives for literaly YEARS. So I'm going to let her go after this one for now. About the O2 levels: My last test showed my lungs were able to maintain a normal level even while walking. What they don't see is what happens just after I stop. THAT's when I start having trouble with breathing. That's when my muscles start to hurt like crazy. And the tests don't show how I end up being housebound for at least two days after having to exert myself ("exert myself" meaning going to the VA, walking from the parking lot to my appointments, any walking around the hospital I have to do, and then walking back to the car). MaryAnn: The smaller bottles are supposed to last 4 hours. The regulator is an "on demand" type. It opens up as you breath in and then closes as you breath out, unlike the E series which has a continuous flow regulator. The tech that delivered the system told me the little bottles would only last 45 minutes on continuous flow. Bess: Yea, that's how I got the rolligon walker I have. No hassle, got it within 10 minutes of walking into the DAV. Unfortunately we haven't found anyone who has powered chairs or scooters ... yet . Once again, thanks!! Dean Quote Link to comment Share on other sites More sharing options...
Fay A. Posted January 17, 2004 Share Posted January 17, 2004 Dean, When they are measuring your Oxygen Sat levels they're SUPPOSED to include what they refer to as the "recovery period"....the time you referred to just after you stop exerting yourself when your body is trying to recover from the demands still being made by your muscles, but the lack of oxygen because you are no longer breathing as heavily. If your levels drop low enough to qualify you for supplemental oxygen, then they should be low enough for you to qualify for a motorized chair or scooter. Look, something just isn't right here. I'm glad your wife is going to dig around until she finds the answers. You hang in there. Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted January 17, 2004 Share Posted January 17, 2004 Dean, here is hoping your wife can get the job done. I just hate the governmental administrations sometimes. Get in touch with your congressperson and beg them to help. I wish I could buy you the d@#!scooter myself. My prayers are with you. David C Quote Link to comment Share on other sites More sharing options...
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