Thursday, April 29, 2010

A Reminder to Mark Your Calendars … and Other Comments

Thank you

Thanks to everyone who responded to my request for help. I appreciate your thoughts and will attempt to incorporate your ideas into future articles. Sunday's article will be on Financial Planning, a requested topic.

Two researchers will be guests in upcoming chat rooms

Join us for the May 1 and May 15 chats because we have two special guests. Or, if you cannot join us, make certain you read the transcripts after they are posted on the KDA website.

May 1, 10:30 AM EDT, we have Lenore Beitel, Ph.D. Lady Davis Institute for Medical Research, SMBD-Jewish General Hospital, Montreal, Quebec, Canada. Lenore was awarded a research grant from the KDA this last winter to further study the role of the proteasome and its ability (or lack of ability) to degrade mutant androgen receptors (AR).  She hopes to determine directly if the mutant AR really does 'clog' up the proteasome.  Up to this point, most of the evidence for such an effect is circumstantial.

May 15, 10:30 AM EDT, we have Parsa Kazemi-Esfarjani, B.Sc., Ph.D. is a researcher for the Department of Pediatrics, Division of Genetics, Institute for Genomic Medicine at the School of Medicine, University of California, San Diego. Parsa is also a 2009 KDA grant recipient. His research will attempt to determine whether, and to what extent, the mutant androgen receptor (AR) in the muscle contributes to both muscle atrophy and motor neuron degeneration in Kennedy's Disease.  They have produced a mouse model with Kennedy's Disease which they can remove the mutant AR gene just in the muscle cells (this is due to a genetic manipulation), leaving the mutant AR intact in the rest of the cells.  This type of research will hopefully show which cells and tissues are the most important for the timing of the appearance of Kennedy's Disease symptoms (i.e., the onset) and/or the pace of their progression. With this knowledge, they will be able to develop therapies for Kennedy's Disease more effectively and target them to the appropriate tissues.


More reasons to like my Permobil

The more I use my new chair, the more I find ways to use the features to my benefit. One that I was not aware of has shown up over the last couple of weeks. I realized that if my legs feel a little weak, I lift the seat up a little higher to make it easier to stand. Conversely, if my legs are stronger, I just raise the lift seat a little. I know it does not sound like a big deal, but if it were you trying to stand up, you would know what I am talking about.

I mentioned earlier the ability of the chair's controller arm to slide to the side and back along the armrest. This is convenient, but I never realized how convenient until I used it with the seat height option. Sliding up to any height table is now much easier. I flip the controller to the side and roll slowly forward as I adjust my seat height to comfortable fit underneath the table. It is perfect and makes eating so much easier when I am out on the town. It is especially useful when our cat takes ownership of my office chair and I need to work out of my wheelchair. Why don't I just move the cat? Read his short story and you will understand why.


I am thankful I live in the South

Being a Yankee and spending some time in Canada, I cannot say enough about how much I love the North. That being said, this winter was extra tough on me. It seemed to tax my muscle strength more than normal. The legs acted as if they were on vacation the first couple of months this year. I was very concerned when taking showers this winter because I did not feel safe getting in and out of the shower stall. Fortunately, spring arrived just in time and my leg strength came back nicely. Since the warm-up, showers are not a concern once again. Whew!

Tuesday, April 27, 2010

Please do not mention this to my wife …

but … I am at a loss for words. YIKES!

I am sitting here this morning trying to come up with a new topic. One thing I have learned about writing is that when you are not inspired, just start writing whatever comes to mind and then go with the flow. So here we go …

It is hard to believe that over the last eight months I have written 130 articles related to Kennedy's Disease and living with Kennedy's Disease. The articles have covered a wide range of subjects from embarrassing moments to interviews with researchers. Some of the most interesting articles for me are those concerning current research. It seems like every time I write one of these articles I learn something in the process. I definitely am not an expert on Kennedy's Disease, but I know enough to be dangerous.

I find it interesting that my audience continues to grow (up 9% this month). Over the last thirty days there have been 1,523 page views with visitors reading an average of 1.9 pages per visit. Almost fifty percent of the page views were by first time visitors. The two stories on IGF-1 (Part I and II) were the most read articles during this period. Readership has increased to a daily range of 16-30 visitors with the average being 22. This is wonderful news for me, because I was not sure how many people might be interested in my ramblings. It just shows that there are insomniacs out there that need something other than counting sheep to put them to sleep.

I keep on looking for ways to improve the quality of my articles. I want readers to find them interesting and entertaining, but also educational. For years I found it difficult to talk openly about Kennedy's Disease, but fortunately I was able to break away from my fears and apprehensions and just lay it out there. That is not saying that I still do not have taboo subjects. They are far fewer than before, but they are still there. My hope is that someday soon I can break through these last few barriers and write openly about those topics. What topics, you ask? You will have to stick around to find out.

To improve this blog, however, I need your help. I would appreciate it if you would let me know (by adding a comment or sending me an email) what subjects you would like tackled or questions you have always wanted to ask, but haven't. Your help will steer me in the right direction and perhaps further improve my knowledge of the disease as well as what it is like living with it. So, don't be bashful and let me know what you think. Besides continuing to keep you updated with current research …

  • What subjects would you like to know more about?
  • What questions do you still have that I might be able to help answer or find someone that can answer them for you?
  • How can I improve this blog?
Oh, and reference my asking you to not mention this little problem to my wife; go for it, she would never believe it anyway.

Sunday, April 25, 2010

Perfecting an Art

Those of us living with Kennedy's Disease have perfected the art of falling. It is not an art that any of us wanted, but over time we all find it necessary to excel in something and it might as well be falling.

There are normally three types of falls. The first is the "header." It usually starts with a stumble or loss of balance. You find that you are going down and cannot react quick enough to save yourself. The "header" is a fall that does not normally cause any serious injury since your knees, hands and arms take most of the punishment. Unfortunately, a "header" has been the cause of torn pant legs more than once. Several dress and suit slacks of mine were ruined because of these falls. When your suit pants are torn, it is an expensive fall. For years every fall of mine was a "header." It was a frustration, but not much more.

The next fall is a "behinder." These falls usually occur when you are pulling on something (i.e., a door) and you lose your balance while stepping backwards. A "behinder" can also occur when climbing stairs or stepping up. When you are on stairs or a step and you lose your balance, the results can be more serious since you are falling backwards as well as down. My most serious "behinder" took place when I was stepping into the house from the garage. I was on the second step when I lost my balance. I grabbed the doorframe, but could not hold on. I fell backwards and cracked my head on the concrete floor. I was unconscious for several minutes. An MRI showed some bleeding on the brain, but fortunately nothing more serious.

The most serious falls for me have been the "plunge." This fall occurs when a knee just gives out (buckles). When this happens I go straight down while subjecting my bones and joints to 180 pounds of twisting stress. For some reason, I progressed to the "plunge" about seven or eight years ago. It normally happens when I am fatigued. My injuries from the "plunge" have been numerous. Several times I sprained a knee. Once I tore my meniscus. Four times I fractured a fibula or anklebone. Twice I broke metatarsals. And, the worst fall was when I fractured my tibia and fibula.

This last injury, along with my doctor's recommendation, made me decide to begin using a wheelchair. Learning that I have severe osteoporosis in the left leg and the next fall could shatter the bones helped make that decision. I still perform standing exercises every day and use the walker occasionally, but now I live by the motto, "Better safe than sorry." I commented in a couple of other posts how not being able to place any weight on my left leg for three months changed our lives. It was the most serious and life-changing injury I have experienced. Fortunately, the physical therapist gave me a few exercises designed to improve the strength of my quads. These exercises really work.

My brother usually falls forward and because of that, he hardly ever experiences anything worse than a minor injury. I am certain that if I were still falling forward most of the time, I would be walking with a cane yet today. I guess I am a little jealous.

Now, while perfecting the art of falling, we also have to gain another skill. As the disease progresses, getting back up afterwards becomes more difficult. More than once I have found myself in a position or circumstance (e.g., confined space) that was almost impossible to get up from. Fortunately, in almost every circumstance, someone nearby was there to help.

How about you? What type of falls do you normally have?

Thursday, April 22, 2010

Keeping the Juices Flowing

In the spring KDA newsletter, Stan Highe wrote an interesting article about hobbies. I believe everyone needs a hobby … a distraction from what is happening around you. Hobbies are normally healthy activities that keep the mind and often the body focused on other, more pleasant, things in life.

Stan wrote in his article: " defines a hobby as 'an activity or interest pursued for pleasure or relaxation and not as a main occupation.' We need an outlet to relieve stress, have fun or whatever. Some people may eat, sleep or just watch TV. A hobby offers another more productive alternative to languishing on the couch.

I don't think anyone disputes the value of a hobby. Besides being a source of pleasure or relaxation, some of the benefits of a hobby are self-improvement, keeping the mind active and sharp or acquiring new skills. A hobby can be a source of physical and psychological benefit too. It may get you out of the house for some exercise and fresh air, or just provide piece-of-mind. In addition, as one gains experience and knowledge, a hobby can become profitable or lead to a new career."

A hobby needs to be almost a passion so that the juices flow whenever you are engaged in the activity. I have a brother-in-law who was an avid hunter. He became involved in taxidermy out of the love for the outdoors. He became quite good at it, and as a result, his hobby has become a business where, unfortunately, he has little time for his own projects.

If a person becomes disabled and does not have a hobby, often the person will become a "couch-potato." When that happens, the mind and body can both wither away in no time. I mentioned the word "passion" in the previous paragraph. If you cannot get excited about your hobby, why do it? However, hobbies can also become an obsession. When that happens, it can be as negative as not having one.

My hobbies have changed with my mobility. We were avid hikers and spent a couple of weekends each month in the mountains and forests. We also enjoyed bike riding and sailing. I liked building and repairing things … especially birdhouses and feeders. I now enjoy bird watching and take time every day to commune with nature when walking (I ride) Fred, my beagle. I enjoy writing and reading. I read every day and have one-to-three books going at a time. I love to write, but find editing work. I had another writer that was an excellent sounding board for ideas and drafts. She knew just what to say to motivate my editing. I need to find a new resource and that might be just the motivation I need to improve this craft. All I know is that when the "juices flow," it is hard to get me to stop writing.

Stan Highe made several other good points in his article on hobbies: "It really doesn't matter if you are healthy or someone with Kennedy's Disease. It is necessary to answer the questions of expected benefits, interest, funds, space and time as those are tools used to decide on a hobby, or at least narrow the field. Taking all these things into consideration will help in your search and lead to finding a hobby that will hopefully stay with you for years, and provide a more rewarding experience.

Kennedy's Disease should not be the major determining or limiting factor in choosing a hobby. It really should be left open for the individual to decide based on the other criteria first. One thing to remember though is that as your strength wanes, your hobby may have to change or you may need to adapt. By the way, there is no rule that says you can only have one hobby. You could have one for rainy days, and one for nice days."

I feel it is especially important to have a hobby you enjoy when you retire. I worked hard, traveled quite a bit, and put in plenty of hours at work. Somehow I still was able to make time to enjoy life. If I did not have enjoyable diversions when I retired, however, the transition would have been difficult. As it turned out, between my hobbies and my involvement in the KDA, the transition was fairly easy. Yes, I did miss the daily interaction with co-workers and customers. And, I did miss the challenges and accomplishments associated with the job, but I did not miss working. I still feel today that early retirement was the right move for me.

What are your hobbies? How do you think they have benefited you?

Tuesday, April 20, 2010

Being able to share is important

The KDA Chat Room and Forum

The Kennedy's Disease Association (KDA) offers several opportunities for people living with Kennedy's Disease to interact. Two of my favorites are the chat room and forum. The chat room provides everyone a voice that is interested in discussing anything related to Kennedy's Disease. It is real time (live) and you never know what you will hear. Chat rooms are excellent vehicles to discuss current research, interact with researchers and other guests, as well as share your thoughts and opinions. Usually, a chat will have eight to fifteen people present. Because of the time constraints, many people outside the United States and Canada cannot actively participate. The chat room was my first interaction with others living with the disease and is how I ended up becoming involved with the KDA.

The forum gives everyone an opportunity to share thoughts and concerns, ask questions, or provide helpful advice. It is more structured since it is not live. The forum is an excellent place to share links on current research or other topics. No topic is sacred. The forum has a much larger audience since anyone can browse the topics at any time and provide comments. It is now my favorite form of communication with others living with the disease because often people do not feel comfortable asking questions in a chat room environment.

What I have learned through active participation in both venues is that:

  • people need help finding answers to their questions and concerns
  • people want to help others by sharing their experiences
  • researchers and other professionals are willing to share their knowledge and insights to help those of us living with the disease
If you have not participated in a chat room or the forum, I can honestly say you are missing a unique opportunity to learn and to help others.

The Permobil Rocks!

Two weeks ago I wrote about my first impressions of my new wheelchair. Looking back twenty or thirties years, I would never have dreamed that that I would become excited over a wheelchair. Let me say it again, this chair rocks!

I am so thankful for the MDA Clinic and the ALS Coordinator who was there last November. She was intuitive enough to ask a few questions and persuasive enough to encourage me to see a "seating specialist" before buying a chair. The chair I had already picked out was a Jazzy with a lift seat. The coordinator was familiar with Kennedy's Disease. She took one look at my medical necessity form and recommended against buying that chair. She was so right. The Jazzy is a good chair and would have been fine for a few years. The Permobil, on the other hand, is not just for mobility. It enhances your life in a very comfortable way.

I will once again recommend that when the time is right (and you will know when it is), ask your doctor to recommend a seating specialist (occupation therapist) before moving ahead with a purchase. It is worth the time.

Sunday, April 18, 2010

Looking for ways to help it do its day job

I was reading an article the other day about the move that some researchers are making towards trying to reprogram genes to help them clean up waste materials in nerve cells. The article mentions Kennedy's Disease, Parkinson's Disease, Huntington's Disease, ALS, and other diseases of the motor neurons. The article was well written (i.e., I could understand it), but it is only an overview and does not really go into any detail about the current research in this area. The link to this article is Hoarding Junk is Hard on the Nerves in Neurodegenerative Diseases. Reading the article, however, made me want to write a little more about the mutated gene in Kennedy's Disease.

Since the mutation in the CAG (three pieces of DNA that are repeated and expanded in people with Kennedy's Disease) caused the Androgen Receptor to not function normally, most of the earlier research and clinical trials focused on blocking the AR from trying to "do its day job" (cleaning the cell of garbage). Since we cannot change the gene, researchers are attempting to change the process (normalize it) to remove or minimize the toxicity (trying to make the protein behave normally).

In several posts I wrote about how some researchers today are trying to find a way to make the Androgen Receptors "do their day jobs." The two recent articles on IGF-1 (Part I and Part II) are an example of this new way of thinking. Maria Pennuto explained more about the AR's role (its day job), and how IGF-1 might help it to continue to do its job if we catch the mutation early enough.

Dr. Diane Merry in a chat last fall talked about her team's approach and some researchers at Duke University working on ways to allow the AR to do its day job and still slow the progression of Kennedy's Disease. "Donald McDonald at Duke has been designing whole libraries of compounds that bind to the AR and prevent the shape change that we have found to be involved in the toxicity. So, the nice thing about the Duke compounds, called SARMs for selective AR modulators, is that they can bind to the AR, prevent its toxicity (in our initial studies), but still allow the AR to do its day job. ASC-J9 (another potential treatment) seems to prevent aggregation and promote the shredding of the protein, probably by directly affecting the shape change of the AR."

Heather Montie's chat last December also discussed how earlier and current research differs on combating the mutation. "So Leuporelin, the drug they used in Japan's clinical trial, which inhibits testosterone formation, keeps the AR out of the nucleus. To an extent, Avodart does kind of the same thing, since it inhibits the more potent androgen (DHT) from being made. My work gave us clues as to what we need to focus on … direct a therapy towards the events that occur within the nucleus when the mutant AR is there ... that leads to toxicity. My current project concerns a modification that normally occurs to the AR ... called Acetylation. It is the addition of a chemical group to the AR protein, which allows it to do various things within the nucleus. I have found that if you inhibit this 'modification' it inhibits the toxicity of the mutant AR. But, this poses a little bit of an issue, because inhibiting this 'modification' decreases the AR's ability to do its 'day job.' So, I have also found that if you just 'toggle' down this modification a little bit, it still rescues cells and motor neurons from mutant AR's toxic effects."

Personally, I like the concept of allowing the AR to do its day job. It seems more normal than trying to prohibit or inhibit the AR from functioning. I am anxious to hear more about this approach and hope to see a clinical trial soon.

Thursday, April 15, 2010

What the heck is a PMA and why is it so important?

Throughout the last eight months or so, you have seen in my blog that I have certain sayings that I like to use depending upon the circumstances. "Nothing comes into existence uninvited" is one of my favorites. This one I use in many ways, but for me it has a lot to do with my perception of what is happening around me. If I am negative, I will only see the negative. If I can get beyond my ego-based thoughts when something goes wrong, a positive attitude or perception of an occurrence can lead to positive results. This positive view, however, cannot be forced or fake. It has to be real.

"This too will pass" is an important saying to me, now, more than ever. If I do become "bummed out" or negative, just telling myself that this feeling will pass helps loads and starts me on the way towards a more positive tomorrow. "This too will pass" is like the direction sign at a crossroad in life. Do I take the negative way or the positive way? What way will be easier in the end?

There is another saying that fits many occasions for those of us living with Kennedy's Disease. "If you always do what you have always done, you will always get what you always got," is something that we used at work to embrace change and continuous improvement. In my life, it also means that if I do not change … try to improve … then how can I expect anything better than I already have? This is something that I have applied to exercise and my diet, as well as, my attitude.

"Can't never could do nothing" is something my father told me many times whenever I wanted to give up. Fortunately, giving up is not in my vocabulary. Giving in to something is acceptable (like my progressive weakening) as long as I find a way around it (like an up-lift seat or wheelchair, for example). Finding another way to get things done is not giving up. I am just giving (accepting my limitations) and finding another way to get things done.

"Use it or lose it" is something I use to help me exercise every day. I know from firsthand experience that if you let the muscle atrophy, they will.

"Patience fosters acceptance" is another excellent saying for me since patience is something that I am often in short supply of.

"Realism tempers expectations" is something those of us living with Kennedy's Disease have to face regularly. Most of my injuries were the result of a false sense of capability. This is why "can't never could do nothing" needs tempering by adding in a little bit of realism.

"Every man at some point in his life is going to lose a battle. He is going to fight and he is going to lose. What makes him a man is that in the midst of the battle he does not lose himself." In addition, "God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." These two sayings are important to me. They remind me that personal pride and dignity are important as long as they are not ego-driven; and frustration and anger do nothing to help any situation.

So, what the heck is PMA? All of the above sayings help me keep a "positive mental attitude." It is not always easy and occasionally I fail miserably, but if I can maintain a PMA, life is normally better and a lot easier for me and especially for my wife.

I will leave you with a statement from one of my favorite inspirational authors:
Do you have any favorite sayings that help you to live with Kennedy's Disease?

Monday, April 12, 2010

A Change in Thinking

Ever since the progression of Kennedy's Disease began to require mobility aids or some type of assistive devices, I purchased only what was minimally needed to get by. My reasoning for this was twofold. 1) My ego would not allow me to consider purchasing anything more than I currently needed. 2) My frugalness (others might call it something else) could not justify buying anything that I did not currently need (anything more would be a waste of money). 

This philosophy set up a scenario where every two or three years it seemed like I always found myself needing something new.  An example of this process occurred with my first wheelchair. I knew that sometime down the line I would need a higher seat or a lift seat. Because the initial cost would have been about $1,000, I declined. A couple of years later I break my tibia and fibula and cannot place any weight on that leg for several months. If I had bought the lift seat system, life would have been substantially different during the recovery. In addition, because I installed in our van a rear entry interior lift ramp (Bruno Joey) for the chair only, I could not go anywhere during the recovery period because I could not transfer to the van's seat.

Last fall when I was looking at replacing my wheelchair, I reevaluated my thinking process and decided it was time for a change. Now, whenever I have a new need, I determine what I currently need as well as my possible needs within the next three-to-five years. This process helps me better compare products, options, and pricing. My last two purchases satisfy both my current needs as well as potential future needs for several years to come. The wheelchair, for example, has several options I currently do not need (nice to haves), but also are options that I will probably need in a few years. This brand also has several other options available (easily added at minimal cost) should I ever need them. The beauty of this new way of thinking is that I will not be scrambling trying to find something at the last minute that will satisfy a new need.

I am now looking at my proposed van purchase the same way. Why spend money on a vehicle and potentially not be able to drive it after a few years (without additional modifications) because of the progression of the disease or some unforeseen additional need?

This is new uncharted territory for me. We will see if this new way of thinking holds up over time, but right now I feel confident this is the right way to go.

Saturday, April 10, 2010

The Hidden Cost of a Misdiagnosis

It would be interesting to take a survey of all of us with Kennedy's Disease to determine what percentage were misdiagnosed initially. I realize that Kennedy's Disease is a rare disorder and that most family doctors have not ever heard of it. However, there are still a number of neurologists that have never treated a patient with Kennedy's Disease.

The problem I have with this scenario is that far too often in this modern world of medicine we are still being misdiagnosed. The DNA blood test is a simple, relatively fast, and a low cost way to determine if a patient has Kennedy's Disease. Yet, a least a couple of times a month I receive an email from a family member (most often the spouse) explaining the symptoms and wondering if it could be Kennedy's Disease. Because the internet can be an excellent resource to help educate us on symptoms and potential health concerns, most often the person stumbles across Kennedy's Disease and the Kennedy's Disease Association in those searches. Even more impressive is that people are more likely to share the information they discovered with their doctors. Thank God that the days of simply letting the diagnosis and treatment be a one-way conversation are mostly gone.

Yes, I realize a diagnosis is often a best guess based upon visible or quantifiable symptoms. It is not an exact science. On the other hand, doctors have many tests today (as compared to just ten or twenty years ago) to help diagnose a condition or disease. My concern is for family when a misdiagnosis is initially given. Most often the misdiagnosis is ALS. I cannot even recount the number of times someone has shared his or her family's story after being misdiagnosed. The initial thoughts and emotions are difficult to grasp as they try to rationalize why this is happening to them and what it means to the family. Some families have made life-changing decisions after the initial misdiagnosis.

This, to me, is the hidden cost of a misdiagnosis. The emotional impact on the entire family is often overwhelming. Fortunately, we were born fairly resilient. Most of us seem to find a way to pick up the pieces and move on. This is the beauty of the human spirit. And, if there is any blessing in being diagnosed with Kennedy's Disease, it is that the disease progresses slowly. We have time … to plan, to adjust, and to live. I am not saying it will be easy, but at least we have some time.

Were you initially misdiagnosed? If so, what was the initial diagnosis? What were those first days like for you and your family?

Thursday, April 8, 2010

A Major Investment

As I mentioned earlier, my new wheelchair is too tall to fit in the back of my current minivan. Since I was already looking at replacing our van, I have been doing some research. One thing I learned right away is that there are dozens of considerations and options. In today's article, I will list the considerations and options that I am aware of so far. Understanding what my needs are (or will be) will help my mobility dealer(s) make recommendations and help me end up with the right vehicle.


  • How much can I afford or am willing to pay?
  • Will I finance the van or pay cash?
  • Will the dealer accept a trade-in?
  • How many people will you be transporting (4, 5, 7, or more)?
  • How much interior height room do I need (in the back, middle, or front driver/passenger area)?
  • Will I transfer from the chair to the driver or passenger seat?
  • Is there an emergency exit in case of an emergency (i.e., loss of power)?
  • How much driving do you plan on (annual mileage estimate will help decide whether a new or used van is needed)?
  • Will you need the van for anything special requiring more ground clearance or storage capacity?
  • Will you be driving or do you want to sit in the front (or are you comfortable sitting in the back or middle)?
  • Can you transfer to a regular car seat or do you have to remain in the wheelchair?
  • Will both you and your significant other be driving?
  • Do you feel comfortable ordering a van from a company out of the area without seeing or driving it?
  • Do the exterior color and style matter?
  • Would you accept any make and model, or do you have a preference?
  • Will the van be the primary family vehicle or a second car?
  • Financial Consideration: Do you want a new van or will a used one work?
  • Are there any rebates available?
  • Length of Ownership Consideration: How long do you plan to keep the van and what will your progression be during that period?
  • How much entry height do I need (door clearance)?
  • How much interior height do I need (52 to 56+ inches)?
  • Would I prefer a minivan or a full size van (driving preference)?
  • Do you want mechanical or are manual (straps) tie downs acceptable?
  • Do you need hand controls for braking and acceleration?
  • Is the price negotiable?

Van Options:

  • Full size or minivan
  • Ramp Vans
    • Rear entry
    • Side entry with ramp in floor, under floor, or fold down

  • Lift Vans
    • Rear lift with exterior storage
    • Rear lift with interior storage
    • Side lift with interior storage
  • Rear Hoist with interior storage
  • Lowered floor (10, 12, 13+ inches)
  • Higher door entrance (52 to 56+ inches)
  • Driver or passenger transfer seats (interior or exterior transfer)
  • Removable passenger or driver seat
  • Mechanical (i.e., EZ-Lock) tie down or manual (straps)
One company I contacted requires that if you plan to drive from a wheelchair that you need to go through a driver evaluation and assessment program at your own expense (offered through the same company). The company has a liability concern and wants to know your capabilities to drive and what options you will need to drive (i.e., hand controls). This is a business requirement and not a state or federal requirement. This means Medicare does not cover the expense.

As I learn more, I will be adding to my list of considerations and options. Considering this is a major investment (depending upon options, it could add another $24,000+ to the price of the vehicle), I need to do my homework ahead of time.

Can you think of anything else that needs to be added to this list?

Tuesday, April 6, 2010

The Ability to Compensate

One of the dictionary's definitions of "compensate" is to "adjust or make up for shortcomings."

My body's ability to compensate never ceases to amaze me. Over the last thirty years, I have watched as muscle groups became more important than individual muscles. I have seen the benefits of locking the quads to prevent the knees from buckling. And, I have become accustomed to using the shoulder muscles to help lift the arm above the head when I am holding something. The body's ability to compensate is what keeps us active and still involved. If the body did not compensate for a dying muscle, I would hate to think what kind of condition I would be in today.

Unfortunately, there are no muscle groups to help compensate for the loss of the use of my left thumb and index finger. Over the last several years my left thumb has given me problems when temperatures drop below 50. When temperatures drop below freezing, the left thumb stops functioning altogether. When this happens, picking thing up, opening jars, washing dishes, typing, and holding objects become difficult. I have to remain focused on what I am doing as well as being extra careful during these times.

This winter my left index finger has taken on the same characteristics as my thumb. It was difficult enough before, but now trying to use my left hand during the winter has become a real test. When I am in my wheelchair, my right hand drives the chair. This leaves the left hand to pick up and carry things like a glass of water, coffee cup or plate. If the thumb and index finger no longer work, I cannot safely grasp and hold things as I transport them from one location to another. My hand exercises help some, but not enough. I am concerned what will happen next winter if I cannot find something to help. Hand warmers seem to help some, but not enough. Someone mentioned heated electric gloves. That might have to be the next purchase.

I am seeing my neurologist in two months and plan on discussing this issue with him. Fortunately, spring is finally here and the days are warming up. When temperatures were in the 70's last week, my left thumb and index finger were almost back to normal.

Are any of you experiencing similar problems?

Saturday, April 3, 2010

First Impressions

Well, it was delivered Thursday. My Permobil C300 PS2 wheelchair is here and I must say, "I am impressed." It has been 40 hours and I continue to find more to like. I just took my first nap in the chair (something I never could have done comfortably in my old chair) yesterday afternoon. It was a very nice (comfortable) forty-minute experience and something I look forward to again.

So far, this is a list of the likes and dislikes of the new chair.

  • Seat cushion: It fits me like a glove and provides plenty of support.
  • Backrest: It provides tremendous support and is very comfortable. You seem to mold into the backrest.
  • Seat lift: The seat rises eight inches and makes it possible to talk almost eye-to-eye with anyone or accommodate different table heights. I can now stand up easily from the seated position.
  • Seat tilt: I was not certain I would use this feature, but I was wrong. It allows you to take the pressure off one area when sitting for long periods of time.
  • Back recline: This is a nice feature when you want to just relax or find a more comfortable position.
  • Leg lift: Again, I was not certain how much I would use this feature, but it sure makes sitting more comfortable.
  • Headrest: My other chair's headrest just seemed like an afterthought. This headrest is contoured and it can move forward, backwards, up or down.
  • Toggle switches: These allow me to operate the devices mentioned above without having to use the Profile button on the controller.
  • R-Net Controller: Some thought went into this because it is well designed, digital, and easy to read/understand. It also has the retractable joystick mount giving it the capability of sliding around and back of the armrest to help you sit closer to a table or desk.
  • Motors and transmissions: Quiet … something unheard of (or always heard) in my last chair.
  • Looks and overall design: Not only does it feel like it was made for me, it looks like it also.

  • Not as portable: It does not fit in the back of our van because the high backrest does not fold down. Until then, I have to use the old chair when we go out. We start van shopping next week. It is something we have wanted to do for some time, but decided to wait until I bought my new chair.

As you can tell, it was well worth the wait. When you adjust the backrest, seat tilt, and leg lift, you can find a great position for watching TV or just napping. To read more about the process of selecting a chair, check out these older links: Seating Specialist, C500 vs. C300, and Power Wheelchairs and Medicare Part I and Part II. And, for a little humor about wheelchairs: Top Ten Benefits.

In closing, I would like to thank Bob, one of my blog readers. Bob owns a C300 and he highly recommended it to me.

Thursday, April 1, 2010

Then the realization sets in

This is a follow up post to Tuesday's article on "the slide." If you have followed my posts over the last seven months, you noticed that I mention "the slide" often. "The slide" is always a concern, because you never know how far you will come back (recover) afterwards. In this post, I want to discuss the realization that sets in after you recover. That realization is another wake-up call.

When you feel yourself coming out of a "slide," you cannot believe how good and strong you feel. The muscles are working better and everything seems so much easier once again. Standing up from a chair, performing your exercises, or just standing in the kitchen as you prepare lunch feels great. You had forgotten how nice it was not to struggle. Your mood is 100% better and life begins to settle back into its normal routine. I call it the plateau or the "life is good" stage.

Then you try to do something that was routine only a few days ago and you realize that you lost something in "the slide;" something that might not ever come back again. One or more muscle groups are just a little weaker than before. It is not that noticeable because the difference is only marginal, but weaker it is.

I liken it to putting a jigsaw puzzle together for the second or third time. Then, when you are almost finished you notice a piece is missing. The puzzle is still the same puzzle, yet it is now different … it is incomplete. You search for the piece, but you cannot find it. The piece is lost forever and the puzzle will never be the same again.

Like the puzzle, once that muscle or motor neuron is dead, your body will never quite be the same. You learn to compensate for the weakened state and, over time, you forget that not very long ago you were still able to use that particular muscle. 

Life goes on … until the next "slide."