Chronic Progressive Illness, Not Always as It Appears

[Gabriella7]

Sally, It is very easy to talk about something that I have lived with for so long. I know that other normals don't have any idea what we with chronic disease go through on a daily basis. My husband wants me to go back to church with him when I am able to get up early enough to get ready to go. I am learning to be more frank instead of just saying "I am fine". Being frank with people is the only way they are going to learn about chronic illness.

Going to the MS expo this Saturday is going to be the test to see if I can do it. He will not be going out this weekend for 4 days as he is having laser surgery tomorrow on one eye and will have to stay inside for 4 days.

Hope your leg heals so you can manage the transfers soon.....

Gabriella

[Chris119]

The trouble with MS is that it's not only chronic, but progressive. Not only is this a disease which will never be cured, but one that has a cast-iron assurance of getting worse. Agencies such as Medicare and Medicaid only nominally recognize chronic disease, but have no recognition at all of disease which is progressive. It is incredibly difficult to anticipate and meet the changing needs of this disease. For instance, it's possible to have a wheelchair paid for by Medicaid and Medicare, but the wheelchair I need today may not necessarily be the wheelchair I need tomorrow. These agencies do not recognize changing needs as a justification for replacing medical equipment. This means that I am existing without the equipment I need for life that is comfortable. In a world where people replace their cell phones every six months, this sort of thing is inconceivable to the average person.

"Impossible" is another word unacceptable to the average person. We have been taught that nothing is impossible if we try hard enough. In fact that is simply not true. For instance, it is now impossible for me to walk. No amount of wanting it to be so, physical therapy, or help from outside sources such as pharmaceuticals will make it possible for my legs to work.

There are many such breaches of consensus reality in chronic, progressive disease. For those not familiar with the term, consensus reality is not actual reality, but the reality that we all have agreed upon. These breaches of consensus reality are what I believe makes it so difficult for those of us who have been diagnosed with MS. It is this that makes us feel so isolated from others in our society. Not that we can particularly do anything about it. It's just that when I understood what was going on, it helped me to feel more at peace with the situation.

By the way, my Dragon NaturallySpeaking is now working on this board! Which is probably why I am rambling like this, because it's so cool that I can actually post here at all!

Chris

[Gabriella7]

Chris,
What you say is so true. When I got my first wheelchair the neuro wrote the scrip for a ultra-light weight chair so I could manage it. It still weighed 22 #'s and was difficult for me to leverage into the area behind the front seat of my car. At that time I was going everywhere independently but not for long. Since I was propelling myself in the chair, I soon began to have problems with my rotator cuff in my left shoulder. My left side is the side most affected by weakness.

I had to wait 5 years for the next piece of equipment. The PT wanted me to have a chair that would last as long as I will so she got me a power chair that I can only use in the lower level of my house. This is what Medicare would pay for. Medicare rules didn't care that I had nothing to use outside the house. I had to pay to get a scooter and a lift for my SUV in order to have something to use outside the house in order to go to doctor's appointments.

Gabriella:angel:

[agate]

For instance, it's possible to have a wheelchair paid for by Medicaid and Medicare, but the wheelchair I need today may not necessarily be the wheelchair I need tomorrow. These agencies do not recognize changing needs as a justification for replacing medical equipment. This means that I am existing without the equipment I need for life that is comfortable.

Chris, I'm glad you pointed this out. I have a manual wheelchair that came to me at no cost through Medicare in 1984, but I'm told that the policy is one wheelchair to a customer for life.

People with MS and other long-term neurological disorders are in a category that doesn't get addressed, in my opinion.

We live on and get worse but the system doesn't take account of that.

Sometimes you can tinker with the system somewhat. I found I could get various add-ons for my wheelchair that were covered by Medicare/Medicaid with a doctor's OK: a special inflatable cushion, an adjustable headrest. And repairs have been done over the years, usually at no cost to me--including new rear wheels.

[Gabriella7]

Hi Agate and Chris, I got the first manual wheelchair around 2002. When I progressed to the point I needed a power chair, I had to go to a PT to be evaluated and the time frame to get another one was 5 years from the first chair. It was around 2007 and Medicare paid for the chair with the doctor's and the PT's recommendation.

If either of you need another chair you might want to check to see if Medicare would cover one now.

Gabriella

[Chris119]

I don't think it's one wheelchair for life, is it? My understanding is that it's one wheelchair every five years. I'm due for a new one in 2012. My wheelchairs are expensive because I need tilt in space, power recline, a power elevating foot plate, and special seating. Also, now I am beginning to have difficulty using a joystick, and I can no longer use my right hand. I don't particularly want the sip and blow method of propulsion, since I'm told it's difficult to learn to use. There are other methods of propulsion, but of course they're expensive. You need to follow the exact set of steps on the Medicare/Medicaid planet that lead to payment for wheelchairs. The whole process up to actually getting the wheelchair takes 6 to 12 months.

And, as Gabriella noted, each person gets only one wheelchair at a time. Also, when it comes to transporting your wheelchair, you're on your own. My existing wheelchair weighs over 300 pounds. Nobody's going to be throwing that thing into a car anytime soon. Also, it has now become next to impossible to physically lever me into a car. Fortunately, I qualified for County transport. I had to jump through a whole lot of hoops to get it, and transport went through the usual maneuvers practiced by state agencies to save themselves money, regardless of the consequences to the person involved. Fortunately, we've reached a status quo, so at least now I can get to doctors appointments.

In many ways, I'm fortunate. Just about the only things that Medicare/Medicaid will pay for are medical equipment. If it's something that merely improves the quality of your life, forget it. If you can't pay for it yourself, you're not going to get it. For instance, around 18 months ago my optic discs began atrophying, a problem for which there is no external fix. This made reading standard sized printing difficult. Around the same time, it became very difficult for me to handle books, turn the pages, etc. The result of all this was that I stopped reading books, and reading books has been a lifelong obsession for me. Fortunately, I was able to afford a Kindle reader for myself. The Kindle allows you to enlarge the print. Now I read 1 to 2 books a week. Around the same time I stopped being able to use my desktop computer much; I really only could use it when somebody was here who could use the mouse and type for me. I was given this laptop I'm using now and the Dragon NaturallySpeaking software as gifts. They are the only reason I can use a computer at all. Improving quality of life is not a justification for Medicare/Medicaid to spend money on an individual. Not that that really surprised me. I'm just saying.

Only recently has Medicare/Medicaid begun drinking the Kool-Aid encoded with the directive that profoundly physically disabled people in full possession of all their marbles can be kept more cheaply in their homes, rather than in nursing homes. It takes about 10 years to get a new social program up and running. This means I have the dubious distinction of being one of the test subject for this program. However, having been in a nursing home for a six-month period, I think I prefer being a test subject.

Chris

[Gabriella7]

Chris, Unless the rules have changed it is one chair every 5 years if a patient needs one. Medicare doesn't care if one cannot use the chair outside the house. That's the reason my Quantum 610 stays in the house. I will be eligible in 2012 but I don't need another chair. I could use the stair lift on my stairs but last time I checked Medicare doesn't pay for that. The rules do change slowly.

I have been an advocate for the bill that allows patients to stay at home rather than have to go into a nursing home. Every year it has been in congress and I have contacted my representatives and asked them to vote Yes. We are slowly adapting our home to accomplish handicapped living in place. Chris, I'm happy that you are being allowed to trial this arrangement.

I hope 2012 will be the year it passes for all our sakes.......

Edited to add: Today was the MS Expo but I didn't feel up to the task so I stayed in bed until 1:00 pm.

Blessings,
Gabriella:angel:

[Chris119]

When I first started needing the wheelchair full-time in 2002, I was still going to school through VESID; they installed the wheelchair ramp for me. Because of the wheelchair ramp, when I got my power chair in 2004, it was quite easy to take the chair outside. One of the reasons I got the power chair that I did, a Hoveround Technique Frontwheel Drive (which has since been extensively rehabed), was that this wheelchair is a tank. I've taken that wheelchair through open pastures (I live on a farm) with no ill effects. Of course, this was back in the day when I could sit in the wheelchair when it was going over rough ground. Those were the days. During the summer and fall I used to go outside all the time. Now I only go out if I'm on my way to an ambulance, a doctors appointment, or if I give a horseback riding lesson, a fairly rare occurrence these days.

As far as I know, there already is a social program in place designed to keep people in their homes rather than sending them to nursing homes. It's called Nursing Home Transitions which I know because I'm in it. I live in New York State and here this program started in 2006. At the moment this program hasn't done that much for me, but they're about to redeem themselves because at the moment we're working on getting me a generator, which I really need but can't afford.

The biggest problem I found with adapting my living space was in anticipating my needs. As I have noted before MS is progressive, so the adaptations I need today may not necessarily work for me tomorrow.

Chris

[agate]

About programs designed to keep people in place and out of nursing homes, I've heard about one though I'm not a member. It's called the Village to Village Network:
http://www.vtvnetwork.org/content.as...club_id=691012

I couldn't get the FAQ section of its Website to work just now, and so here's a link to an article about it:
http://www.capitalcommunitynews.com/...1_EOR_1011.pdf

[Gabriella7]

It appears to be a state by state project at this time. Not all states have "living in place" laws in place. So it just depends on the state where you live that is until our congress passes the bill to make it a federal requirement for all states.

In Georgia, the nursing home industry rules and has the politicians on their side.

Gabriella:angel: