Wheelchair Progress Continues

If you have been reading this Blog, you know about the difficulties we have been having getting through the first part of the process for replacing my wheelchair. Two weeks ago today, Pam faxed the letter of Medical Necessity, that we had hand carried to my Neurologist for her signature back to Rehab Tech, which they in turn faxed to the insurance company. We had been told to expect a LONG detail getting the insurance company to approve this request with the insurance company doing everything they could not to approve this request.

Last week Monday Pam called the insurance company and was told "Yes they had received the letter and no there was no way to tell exactly where in the approval process it was." Yesterday morning Pam called them again and was told "Oh your request has just been approved". If you call back this afternoon after the letter of approval has been generated we will send you a copy and fax a copy to your durable medical supply company.

This has been a real answer to pray because we were concerned that the insurance company might have been the biggest hurdle in this entire process.

Hopefully Rehab Tech, the durable medical supply company, is working this week between Christmas and New Years and places the order for the new wheelchair with manufacture. We have been told that it normally takes about 6 weeks from the time the order for a new wheelchair is placed until it is delivered to Rehab Tech. Once that happens Rehab Tech will need to add the specialized modifications, things like a ventilator mount, ventilator battery mount and laptop computer tray. Once that has been finished, we must make an appointment with Rehab Institute of Chicago and go there to try out the new wheelchair to make certain that everything is correct. So, as you can see, there is still a long way to go before I actually have this new wheelchair.

However, I think the biggest hurdle is behind us, the hurdle of having the insurance company agreeing to pay for this new wheelchair.

A Merry Sad Christmas.

Yesterday was Christmas. Three of our children and two spouses were here. Our son J and his brother K and sister in-law C came late Christmas Eve, after attending their church's Christmas Eve service. Daughter K and husband K, because they live close, came Christmas morning. Our oldest son and family, who live the furthest away, came the Saturday before Christmas so we celebrated an early Christmas with them.

It was a great Christmas. After our traditional breakfast of pan style oven baked French toast and my niece's Apple Bread Pudding, the guys moved my recliner and all required medical equipment from the smaller den into the much larger great room. While this move was a lot of work, it allowed me to enjoy opening presents and made it possible for everyone to be in the same room while opening Christmas presents. After eating breakfast and getting dressed, but before opening presents, I ended up taking a nap from the exertion. However, I made it through the rest of the day without any more naps. I think we all had a Merry Christmas, P was pleased with her new camera and spent some time getting used to it. Everyone else settled down to read books, put together gifts that needed assembling, or went into the den to play with the WII game daughter K received for Christmas and brought along so others could enjoy it. I connected my computer speakers so we could all listen to Christmas music and so I could communicate with everyone using Cepstral's "SwiftTalker" a text to speech program I have started using.

I think it was that nap, the fact that I had to ask P to help me get ready for bed at 5:30, being in bed for supper and taking a short nap immediately after supper and falling asleep at 8:30 that caused me to review my Blog. Reviewing my Blog told me something I already knew but think I was ignoring and that is that I am much weaker or sicker now then I was at the beginning of the year. In fact reading my Blog I was amazed at how closed in my world has become. I think one can see that by the decreased number of Blog entries I written this past year. I believe the number of Blog entries have decreased because my life has entered a rather set routine because I no longer have the energy to go and do. So I spend my days sitting in the den on my computer using Instant Messaging to talk to family, working Sudoku puzzles, making and solving Jigsaw puzzles, playing Cribbage and either listening to a Southern Gospel Quartet Music web radio station or watching movies I receive through the mail from Netflix. In fact P’s present to me this year was to increase the number of DVD’s we can have checked out from Netflix at a time from one to two. One reason for this change is so P doesn’t have to spend a lot of time searching for movies I am interested at the local library. However, the main reason was to give me the freedom to retain the ability to do something for myself without having to ask someone else to do it, go to the library, for me. Even though there is a slight increase in the monthly Netflix cost, I like being able to find a movie, order it, receive it in the mail, watch it, and return it without bothering, asking, and/or reminding P of yet one more thing she could/should do for me.

I think the above is the happy part of this posting. The sad part is that the neuromuscular disease has progressed much faster and more then I had hoped. I now find that even when I do relative easy things, like doing what most people consider a normal morning routine causes me to become exhausted to the point of needing to take a short nap. As a result I find myself avoiding doing most things, or planning my activities so that I use the least amount of energy. For example on the days that P works, I fill two bottles with water and bring them into the den while waiting for my morning coffee to finish brewing. Also on those days, I will help P prepare my lunch by cutting up a piece of fruit, making a salad while making my breakfast. P will place these items along with a thermos of soup by my chair in the den so I will not have to get up in the middle of the day. I also have a couple of containers so in the middle of the day I empty my Foley collection bag. Because I find talking to be one of the hardest and most tiring things I do, often after someone stops by to visit, my chest muscles are so tired I can't initiate a breath, I have begun using "SwiftTalker" a program that allows me to type sentences, questions or responses and then the program converts the text to speech using my computer speakers.

I have talked to my neurologist about this exhaustion and she tells me that it is caused by the progression of the disease. She tells me that the exhaustion is caused in part by the deterioration of the nerves and in part by the weakening of my muscles. She tells me that because of this deterioration and weakening, I am expending far more energy doing simple tasks then I realize. Because this disease is progressing and because she is doing everything currently approved by the government for treating this type of disease, at my last neurologist visit the doctor asked, if she could find something, would I be interested in taking part in either a medical or drug experimental trial/study that might help to either reverse or slow the progression of this disease and possibly increase muscle strength. In the past, I have talked to my internal medicine doctor about the progression of the disease and he has told me the same things that my neurologist told me. So I told my neurologist that if she finds either a medical or drug experimental trial/study that I would be interested in exploring taking part in one.

Often when I write either a Blog posting or an email similar to this post, at the end I always try to turn to the positive. However, I am not going to do that this time.

The Frustrations

Have you ever thought about what it would be like to have to run your life by another person’s schedule? I know that we all have to change our schedule occasionally to fit it around someone else. However, how would you feel if you ended up doing that most of the time? I imagine that is one of the things prisoners don't like about being incarcerated, the having to conform your everyday schedule to that of the institution?

I have thought about this a lot over the past couple of years. Then these past few weeks it was really brought home to me. I began thinking about this again when it seemed that Rehab Tech couldn't seem to get the Letter of Medical Necessity faxed to my doctor. The person at Rehab Tech would say that it was faxed and the person at the doctor office would claim they never received it. My wife P would try to find the time at work to make some hurried phone calls to try to resolve this issue. I, because I am not able to talk easily, sent emails to Rehab Tech which were not answered for long periods of time. Finally one day when the doctor office called to say that they still hadn't received the Letter of Medical Necessity, I asked for her phone number and fax number. I sent this information to Rehab Tech asking them to please call the doctor office to coordinate the sending of the fax. This past Monday, when at the doctor office, I asked the person if Rehab Tech had ever contacted her. She said no she never heard from them. Fortunately P asked Rehab Tech to email the Letter of Medical Necessity to us which we printed and brought along Monday for the doctors signature.

When we read through the Letter of Medical Necessity we discovered that the Rehab Institute of Chicago (RIC) had the wrong office address and fax number for my doctor. They had the information for the practice she used to work at. Now if I were able to talk on the phone I would have called the person at Rehab Tech and asked her to read the fax number to me. However, because I am only able to send emails, which Rehab Tech, when they finally replied to them, would say "I faxed the Letter of Medical Necessity to your doctor and haven't heard back from them" never writing down which fax number they sent it to. If I had received the fax number Rehab Tech was sending my Letter of Medical Necessity to I would have known they had the wrong number. Now that I've written this information, I believe that it is against Health Insurance Portability and Accountability Act (HIPAA) to fax my health information to a doctor without first calling to find out if you have the correct fax number. The frustration I feel at not being able to pick up the phone and talk for more than a few short sentences or words is immense.

This past Monday morning I had a doctor visit scheduled for 11AM. About 9 AM I remembered that I hadn't received an appointment reminder phone call so asked P to call their office and make certain I did have an appointment for 11. When she called they told her that I wasn't on the schedule and that the doctor no longer had Monday office hours at the office closest to our home. However when P pushed for more information and informed them that we had the card with the appoint date and time on it, the doctor office finally admitted that they had switched to a new computer system and my information must not have transferred from the old system to the new one. They said they would "squeeze" me in at 5:30 Monday evening. As the day progresses, my level of energy decreases to such a low level that by late afternoon I am totally exhausted. The doctor office informed P that it I could come at either 5:30 Monday evening or 6:30 Wednesday evening. When I heard that I exploded with anger. If I had been able to talk I would have explained to the doctor's scheduling person that such a response wasn't acceptable. I would have insisted on talking to the office manager and expressed my anger to that person. Once again I am confined by other people. I can't expect P to stop everything she has to do, remember she is doing everything around here I can't help at all, and argue further. So we took the 5:30 appointment. I am ashamed to admit, that when we arrived at the doctor's office, I had some strongly worded sentences with the poor office girl. I know it is a feeling of helplessness that makes me become so angry about situations like these. I get frustrated because I know how I would like to handle situations like these only because of a physical weakness can't.

Now I finally arrive at the event that caused me to write this. This morning at 11AM I received a phone call from a home aid telling me that she would be here at 12 noon to help me shower. Now I know I could have said "No that won't be convenient because I am planning on eating my lunch at noon". But this isn't my normal home aid; my normal aid was involved in a traffic accident yesterday so the other aids are taking extra patients. So I said yes I could make a noon shower work.

It's not the issue of the home aid coming when I would normally have lunch that is frustrating. It's that I don't have the freedom to decide when I want to take a shower. It's the fact that I need to have a home aid that is frustrating. It is the having to rely on someone to drive you to the doctor and so the doctor appointments are made when it works best for someone else. It's not being able to pick up the phone and talk to someone to try to resolve an issue so I must rely on emails which are easily ignored. It's the fear of total mind and body numbing exhaustion if you do too much, so you soon find yourself afraid to do much of anything. It's the aggravation of not being able to help around the house. Not being what I consider an active, helping team member. It's all of these things plus the many other little things someone with a chronic illness find that they no longer can do

Wheelchair Progress is SLOW but moving forward

The last meeting with Rehab Institute of Chicago (RIC) was November 5, 2009. Now almost 1 month later on Monday evening we received a phone message from RIC saying they finally have finished the paperwork which states that in their opinion I need a new wheelchair. Yesterday, Thursday December 3, 2009 we sent an email to Rehab Tech, the company who will order the new wheelchair, and once they receive it make the special modifications I will need, telling them the letter of medical necessity was on its.

However, Rehab Tech hadn’t received the letter of necessity from RIC yet. I assume it is in the mail and just hasn’t arrived yet. Our contact person at Rehab Tech said once they receive the letter of necessity they will fax it to my neurologist for her signature. Then once they have the doctors signature they will send all the paperwork to our insurance company.

So it seems to me that we have completed only the first two steps in the process of getting the new wheelchair. There are many more steps that need to be completed in this process and all of these steps take time. The next most important step is to receive approval from the insurance company. Once that huge hurdle is behind us it will just be a matter of time. However, until that hurdle is behind us there is still a real possibility that the insurance company will say that in their opinion I don’t need this new wheelchair.

I think it will be many more months before I see this wheelchair.