I went to get sized for my permanent wheelchair last week. This is what happened. A nurse and a vendor both met with me and they both explained to me that Medicare would pay for a one wheelchair in my life based on my current limitations and it could take up to three months. That I could apply for modifications when I needed them and in several weeks they would be approved. I said to myself oh goody, a challenge for me to overcome! Time to use my experience in human relations and how to get people on your side. So I opened with do you both understand that the progression of A L S is well documented? You do? Okay, Tell me your understanding of what my quality of life is going to be with a wheel chair. Then tell me about that quality of life will be when I progress (and I will inevitability progress, you understand that, right?) I can't use the controls because my hands don't work and I am waiting for insurance? They both looked down. Good, now they truly understood my point of view. Step two. I said how much does a wheelchair cost fully tricked out for ALS and no hands., They said a lot. I said narrow it down please They said like a new car. I said foreign or domestic? I said I drive a $120 000 car. is that how much it will cost? they said no, about $30,000. I said okay what if I paid for it. Well you would have thought I said something horrible. They both said no, you don't want to do that. Then listed out the reasons I didn't want to do that. I didn't find any of their arguments persuasive. I said I was worth quite a bit and had a good income, money wasn't an issue. I said I don't want to be sitting in a wheelchair waiting for insurance to move. how do we fix that? Now they were really on my side. They started negotiating with each other, if I do this, can you do that? Over time, they came up with this plan. they think they can push a basic wheelchair designed for my current needs through insurance in about three weeks. The vendor will give the insurance a quote for a basic chair and give me the prices for upgrades. that way I can order them at the same time as the basic chair and have the upgrades installed at the same time. The big expense of the basic chair will go to insurance. And we will try to file for the upgrades when the time comes but I don't really care how long that takes or if it is approved since I will already have them in place.
Now I was exhausted by this by the time I got home but that happens every day now and at least I accomplished something tangible and good.
Sloth handing out in my living room.
Big T Rex in Menagerie
Tasmanian Devil in my living room. I actually have two now. When I fell I never did open the box all the way as the damage was so obvious. It was from amazon so I went and looked up the order and saw the devil was scheduled to be delivered so I returned it. Well later that night the first Devil was delivered.. So I tried to cancel but it was too late. So now I have two,
T Rex in my living room.
Hi Russ, You certainly have a lot going on there. I just love everything you are getting and sorry some of it comes broken, but you did a great job of glueing that one that was damaged. I have loved getting your blogs. I don't like that you are falling. I think a wheelchair is a good idea. Remember I love you and your in my thoughts and prayers!!😁😍 Aunt Jane
absolute mastery communication work my friend!!! another sad example of how broken and dysfunctional the health care system is and has been for over a decade now .. super thankful you're making progress!
Vivian,
It was all done via my app on the phone and my fingers were very tired when I finished. But happy I was still able to communicate without speaking!
You are blessed by your gifts of knowledge, verbal skills, and the art of persuasion. I feel for all of those who suffer and are not able to advocate for themselves. So grateful for your skills and perseverence.