Archive for March, 2013

Policies Change, Disappointment and Hope

I was a very happy lady to be back in my very new comfortable motorized chair. It works beautifully.  It also makes my life easier.

About the middle of February, I received a call from the company that I purchased the chair through. The sales lady tells me that Medicare has denied payment of my new chair as the disease Charcot Foot that I have does not warrant this type of chair. You could have knocked me over with a feather, I could not believe what I was hearing. I, totally, did not understand what was happening as this was a replacement chair. Every 5 years  a patient is to receive a new chair according to Medicare rules. I had qualified for a power chair in 2007.

My provider has been placing people in wheelchairs for over 20 years and is very current on changes of Medicare rules and regulations. Yes, there have been a lot of changes in the last year with Medicare policies, rules etc. The provider had been on phone many times with Medicare and had received a verbal approval. She knew I needed the chair as quickly as I could get it because of skin pressure sores, so she ordered the chair.
 What had to happen at this time was to start the application process over again. I was devastated, but knew that “the Lord does not bring you to a problem that he does not see you through”. A rehab technician and the sales lady from the wheelchair provider came to my home. They were to see  just what type of assistance I needed to live in my home and live a normal as possible existence, and continue living alone and be able to care for myself. New paperwork stated they needed new measurement of my arms, hands and legs. They needed to see how well I can transfer to chairs, bed and shower.  The Rehab tech ruled out the manual chair as I have carpel tunnel and arthritis in my hands and wrists. Because of my left foot amputation and the right foot in a claw boot to protect it, walking is not going to happen.

All of this information has been sent to Medicare, but no answer will, probably, be received till last of April.   I have faith all this will pass and I will be approved. I am not the only person to be denied, many are going through this same  dilemma who are in much worse condition than I. They are in my prayers daily. We will keep everyone informed as to the process and final decision from Medicare. I am using “Big Red” until the decision is made. I feel very blessed. I have a wonderful group of people who are helping me and supporting my wish to be independent.

Bonnie’s continuing story.

Brought to you by Charcot Awareness Education Foundation

New Wheelchair, New Experiences

My last article dated March 7, 2013, I had just received my new wheelchair “Big Red”. It was wonderful. The back conformed right to my back and the seat called “Roho cushioning” is filled with air to protect ones buttocks from getting pressure sores, which Annita’s last article explained very well. I was having some skin breakage, but through doctors care and meds. were healing. But, in a weeks time after receiving “Big Red” were almost healed. Obviously, I was totally pleased with the Roho cushion.  

I had “Big Red” about 10 days, and was thoroughly happy with its performance. I got up to find about an inch of snow on the ground and I was to be picked up by the handy bus to go out to lunch and playing cards. I thought how wonderful! I will get to check out “Big Red” on snow which should be a great experience. My ride was right on time at 9:30 am and away we went to the Carpenter Center. The handy bus driver was teasing me about the fact that I would slip and slide with Big Red. Of course, I reminded him it would be a piece of cake. We arrived at the Carpenter Center, the lift is put down and I venture into the inch of snow. Low and behold the wheelchair just stops completely. I turned it off and on, tried it again and I just went in circles. One side was not operating at all. This is not good as there was somewhat of a breeze and a temperature of about 20. Very cold. The driver of handy bus and another friend came to my rescue. They placed the wheelchair in manual mode, and it still would not budge. One side was locked up for some reason. The guys worked for awhile and nothing. So we called the wheelchair company and they sent someone out to repair it. I was getting pretty cold and everyone was quite concerned. One of my friends came out from the building and said “Bonnie can you walk if someone helps you?” I hadn’t even thought of that as I was so concerned about the new machine just quitting. Of course, if someone is on both sides of me I can walk a short distance. Let me tell you it was so nice to get into the warm building. Yes, a very nerve rattling experience, but the “Lord” had taken care that. I was where people would take care of me. 

The repairman arrived shortly and came in to tell me he had to take the wheelchair to the repair shop as one of the batteries had died and would need to be replaced. I could not believe this was happening. I  had only had the chair 10 days. I have a manual chair that just happened to be in my best friends car. She was at the Carpenter Center. So my ride home was taken care of. Yes, the Lord was working hard for me that day.
So it was back to my old power chair for about 17 days. Oh how I missed the comfort of “Big Red”, but the old machine worked just fine.  Was very nice to receive the call that “Big Red” was repaired and would be delivered in 30 minutes. The new battery was in place. A complete machine check over was done and it was now operating just fine.

Bonnie’s continuing story

Brought to you by Charcot Awareness Education Foundation

Pressure Ulcers From Wheelchair Use

Bonnie, as you know, uses a wheelchair as she has Charcot in the right foot and cannot use it except for transfers. She has it in a clam shell boot to protect it. Because of this and her other foot being amputated, she is confined to a wheelchair most of the time. She has used her present chair a number of years and last summer, when we visited her, she was telling me she was experiencing pressure ulcers, commonly called bed sores, because the chair no longer fits her properly. These pressure sores come about because of friction, humidity, temperature, continence, medication, shearing forces, age and unrelieved pressure.

I , for one, had not taken into consideration that one in a wheelchair would experience sores of any kind. However, when you think of it, it is obvious.

Patients who use a wheelchair have a high risk of developing pressure sores on their: buttocks, tailbone, spine, shoulder blades, back of arms and back of legs. MNT ( is an excellent source on this topic.

Pressure ulcers (bed sores) develop when the skin and the tissue below it becomes damaged. In some cases the muscle and the bone can be damaged also. Sustained pressure can cut off circulation to vulnerable parts of – the body, especially the skin of the buttocks, hips and heels. The affected tissue dies if it does not receive an adequate flow of blood.

Any person who has difficulty changing position can develop ulcers. They can develop and progress rapidly and are frequently difficult to heal. Preventing them is a wise choice.

If a person doesn’t feel pain and may not know a pressure sore is developing. Someone with diabetes and vascular diseases that affect circulation may have problems with proper blood flow to certain tissues, resulting in higher risk of tissue damage. A person may not sense the symptom, yet someone may see a rash on them which might be a sign a pressure sore is starting.

Pressure sores are classified into four possible stages by the National Pressure Ulcer Advisory Panel, USA. Refer to MNT for more info. I will give a brief description.

Stage I – starts as a persistent area of red skin, which may be itchy, painful warm, spongy or firm when touched.

Stage II – skin loss has already taken place.

Stage III – there is now a deep wound, like a crater; the damage has gone below the skin.

Stage IV – most severe ulcer. Skin is severely damaged and there is tissue necrosis (surrounding tissue starts to die).

Bonnie will continue with her recent wheelchair acqusition next week. We are so lucky to have her experiences to share so others can benefit.

Brought to you by Charcot Awareness Education Foundation

Needing to Replace a Wheelchair

Greetings everyone tis I, Bonnie – yes the one Annita is always referring to and shares this awful disease “Charcot”. Annita is the one who has truly went thru a much more traumatic process than I did and her with faith in God, support of a wonderful husband & son and determination to walk is searching for the cause of this disease and has started this wonderful foundation. Many thanks & love Annita & Max. These past 4 years have been amazing and things are “springing” thanks to your dedication and hard work.

Charcot does not go away and Annita and I are living proof of that statement. This week I am writing about my year long process of getting my power chair replaced via Medicare. May of 2012 was the date that I was to replace my power chair as I had received the first one in May of 2007.

In order to replace a wheelchair you must be evaluated by rehab personnel and wheelchair sales people. In my case there was 1 rehab technician and 2 wheelchair sales persons. I must also clarify that your disease is rated in categories (by Medicare) as to what degree your disease could possibly disable an individual. In my case amputee – Charcot in right foot also and requiring a clam shell boot be worn at all times to protect it from breaking bones. I also had lost kidney function for 8 weeks (caused by medication Viox) and since I had been in a manual chair from 2003 to 2006 I had developed carpel tunnel & arthritis in my wrists. I was qualified for a power chair in 2007. At the meeting in May 2012 it was determined, because of my age – I had deterioration further of wrists and they found more arthritis in hands. Because of sitting in the wheelchair long periods of time skin on my buttocks was breaking down causing sores, so now I needed a special air filled seat to protect skin from sores. It was also determined that I need a firmer back so that my back bones & muscles would stay healthy.

Part of this process is measuring strength and usage’s of arms & legs. Then measurements for size of wheelchair to be ordered. I have to admit I’m overweight as you will have seen in past postings of pictures of me. A time was set up for me to have wheelchair sales people come to my house to demonstrate a new wheelchair. I would be able to operate it in my home to see if the wheelchair and myself and the house would work together.

One week later, a wheelchair was brought to my home for a trial run – what a beauty – sort of a Cadillac version of wheelchair. It had head lights and tail lights and all the other things I needed air filled seat, firm body formed back. I hated to have it leave that day , it was truly a dream machine. It also had 14″ wheels to navigate easier on grass and especially dirt roadways and alleys. I was warned by the sales person that this was a very high end machine and I may not qualify for it, however, my trying for it may help other patients. Well, I am aware so let’s go for it -if it will help someone else.

After 2 months of waiting (which is normal for Medicare), the sales person received a denial from Medicare. Not because I wasn’t qualified, but because the rehab doctor had signed two documents on the same day, they were to be dated two different days, I was to have 2 visits with rehab doctor not one (total waste and inconvenience for patient & doctor). Well, this is what Medicare required so documents were resubmitted. Another two month delay only to tell us, that I did not qualify for the chair, diagnosis not severe enough. The sales person called Medicare – to see why they didn’t tell us this with first denial, Medicare person replied, “Oh, I guess I forgot.” It is now October and my old wheelchair was really a mess. Tires bald (could not go anywhere if streets were wet/icy) needed new batteries and seat needed replaced as leatherette was cracking.

The sales person was very apologetic for the time it was taking and got busy searching for a different manufacturer and wheelchair type that I qualified for. She called me in less than a week and said she had found a chair with everything I needed and she had called Medicare. She got a verbal OK and was placing the order that day. We should have it in 10 days, or so. Needless to say I was ecstatic.

The new chair arrived just after Christmas, what a beautiful sight, the metal parts were all a shiny red so hence its nick name “big red” ( Nebraska corn husker’s nick name for sports). Such comfort and a operational dream. The Lord is awesome and I received the best vehicle to make me independent, many prayers of thanks were said that day and every day.

Next week another article about me and my wheelchair story, but for today I leave you with a piece of information on wheelchair approval thru Medicare today. Because of a federal investigation into the operation and purchase thru “the scooter store”, many wheelchair applications to Medicare are being denied and people truly needing this life functioning equipment are just struggling to live and function as a human being. So be sure your medical assistants are getting documents correctly completed and submitted. God bless each and everyone.

Bonnie’s continuing story.

Brought to you by Charcot Awareness Education Foundation