Jun 192015
 

There seems to be some optimism for the future of the new Novartis drug BYM338 currently under investigation for its efficacy and safety as a treatment of inclusion body myositis.There is nothing official, but anecdotal remarks from study participants and others who may have connections within the study point toward encouraging news.

I have heard some people speculate that even if BYM338 is proven effective, it is too late for those of us with more advanced disease. I would like to express a contrary opinion.

My inclusion body myositis has progressed quite far yet I still see potential benefit that could come from BYM338 should it prove effective. After nearly 30 years with IBM (19 since diagnosis) all of my muscles have been affected to some extent. The earliest affected muscles are the worst, such as the quadriceps and finger flexors, but all the rest are gradually growing weaker. At this point, each loss of muscle results in a significant loss of function. For example, the weakness in my diaphragm and core muscles is significantly reducing my ability to breathe and sit upright. The last time my inspiration and expiration strength were measured two years ago, both were only 30% of the low limit of normal. In the past few years, the additional loss of strength in my biceps took away my ability to feed myself using normal motions and forced me to adapt to a slinging motion combined with tilting back in my wheelchair. The point is that once IBM has progressed far enough to cause the ability to walk or stand to be lost, this is far from an endpoint with the illness. I still am able to recruit other muscles to accomplish most of my crucial activities of daily living beyond walking through creativity and use of mechanical aids.

I can also tell that even my most seriously affected muscles still have enough living cells within them to produce tiny movements. After all, a muscle consists of many bundles of muscle fibers which themselves consist of many muscle cells. The point is that even a slight gain in strength and muscle that has been mostly destroyed could still contribute to an adaptation that is important to the patient. Or a slight additional loss of strength could cause that adaptation to be lost.

In my own case, preserving or strengthening certain shoulder muscles could allow me to continue feeding myself indefinitely. Preserving or strengthening remaining healthy muscle fibers in the diaphragm and rib cage could allow me to avoid full-time ventilation. Each of these would be benefits that could easily justify an expensive medication.

If anyone knows how to get this observation in front of any researchers or Novartis executives, please do.

Feb 132014
 

The paperback version of Rolling Back: Through a Life Disabled

The paperback version of Rolling Back: Through a Life Disabled

Rolling Back has been published in paperback and is available on Amazon for $6.99 ($6.64 for Amazon Prime members). There is also the Kindle version that costs $2.99. I have provided links to each of them below.

Writing and publishing Rolling Back as been a personally rewarding experience that I wouldn’t trade for anything. Several people have urged me to write another, and I will probably try. However I think I’m ready for a change of pace and may attempt a fiction novel next. I’d be interested to hear your thoughts.

Paperback:

Kindle:

Feb 042014
 

This is the cover for my new book. The art is a slightly modified version of one of my late wife's paintings.

This is the cover for my new book. The art is a slightly modified version of one of my late wife’s paintings.

My book, Rolling Back: Through a Life Disabled, has been published and is available as a Kindle version on Amazon. You don’t need a Kindle to read it, you can read it on any computer or any tablet for smart phone using the free Kindle app. Kindle owners who are Amazon Prime members can borrow it for free.

Rolling Back will be available as a paperback in a few weeks. Right now it is only in the Kindle format, but will be expanded to include other e-readers in three months. The price for the Kindle version is just $2.99. If cost is an issue I hope to be able to offer it free for five days on Amazon. When that happens, I will let everyone know.

Feb 092013
 

Mike and Beth at a winery in Washington state, 1998

Beth and I visited a winery near Seattle on a 1998 driving trip along the coast to celebrate our 24th anniversary. I had been diagnosed two years earlier and was still getting around using forearm crutches. Beth wouldn't be diagnosed for seven more years.

Over the past several months, I have spent quite a bit of time browsing forums that deal with loss. Loss of a loved one, loss of ability, loss of strength and mobility. It makes me sad to hear of so many people who feel that no longer being able to walk, or no longer having the companionship of a loved one, means that life is no longer worthwhile.

I went from being a low handicap golfer, avid hiker and runner, enthusiastic traveler, to being confined to a wheelchair and now being confined to an 11′ x 15′ room, especially when the weather is too bad to go out for a wheelchair ride. My wife of 38 years died in October, far too young, due to her own rare disabling disease (myotonic muscular dystrophy).

I definitely grieve the loss of my wife and loss of strength and loss of the life I once had. At least once a day that grief will be strong enough to make me stop whatever I’m doing and shed a tear. In fact, during the first couple of months after my wife died, the grief was so intense that it was quite painful physically. Rather than avoid it, I chose to accept that pain, experience it as deeply and fully as possible, and in that way let it help me heal. Years ago, a meditation instructor taught our class how to get rid of a headache. He said when you felt it coming on to focus on the pain as intensely as you could. Try to describe it, determine its focal point, trace it throughout your body. The remarkable thing was that once a person focused intensely on the pain it usually went away. It seems that pain is trying to send us a message and if we can pay attention, it won’t have to shout so loud. So that is Part One of how I deal with grief and loss; I embrace the pain and let it heal. In fact, I pick a fight with it by writing this blog and the new blog I have created celebrating Beth’s life.

Part Two is realizing that my life is about so much more than what I have lost. I have the comfort of feeling surrounded by family, even though many of them live far away. Beyond that, life is so exciting right now due to the advances of technology. My computer provides a window into a world that I could never have imagined when I was growing up. I can use Google Earth Street View and visit nearly any city or countryside in the world just by moving my mouse. One moment I can be “walking” beside the Eiffel Tower, the next I can be riding along the Pacific Coast Highway at Big Sur. Recently I have developed a keen interest in computer programming and have discovered the wonderful online courses offered by Stanford University. In fact I was just watching a lecture (on iTunes) by a Stanford computer professor and marveling at how much I felt like I was right in the room. That prompted me to add this article to my blog.

In a few minutes, the caregiver will deliver my dinner, attach my mobile arm support, place a bib around my neck, and I can enjoy my meal while watching the latest Batman movie on my computer. So yes, my life is populated by loss and grief, but they are joined by new sources of fulfillment. I hope that others in my situation are finding their own joy as we continue this surprising journey.

Dec 182012
 

The Jaeco Mobile Arm Support attaches to my wheelchair.

Inclusion body myositis is somewhat unpredictable. Although you can count on gradually becoming weaker you have no way of knowing which muscles will be affected the most. In my case, it was my legs and fingers that suffered the most damage for many years. I was still able to drive, using hand controls up until November of 2011. But during that year I noticed I was having more and more trouble turning the steering wheel and applying the brakes using the hand lever. By the time I moved to assisted living in May of this year, my left arm was almost completely useless and my right arm was quite limited. This gave me special trouble when eating as I could not bring a fork full of food from plate to my mouth unless I performed a rather bizarre maneuver of holding my right arm out perfectly straight, slinging it out and up and then bending it at the elbow to allow the fork to come near my mouth. Not only must this have looked weird to surrounding diners, it also had a tendency to throw food in a fairly wide arc as the fork took its orbital route from plate to mouth.

Rubber bands support the weight of my arm.

Rubber bands support the weight of my arm.

At the recommendation of a couple of occupational therapists, I looked into a mobile arm support. There are plenty of them out there – the issue is to find a mobility supplier who has the knowledge and is willing to spend the time to fit you with one. I found both qualities in Carlos who works for Access Medical in northern San Diego County. Carlos ordered the equipment from JAECO and brought it to me here at Huntington Manor Assisted Living. After making several adjustments, it is now working just fine.

Going directly from plate to mouth -- what a concept!

You can compare the arm support to a counterbalanced garage door. Rubber bands provide upward torque on the part of the support that holds your forearm. When it’s adjusted properly your forearm will seem to float weightless in front of you. This makes it easy to pick up a forkful of food and bring it directly to the mouth. I am now eating better, throwing much less food around the room and I have Carlos and the JAECO mobile arm support to thank for it, along with Lynn, my occupational therapist at Scripps Rancho Bernardo.

Mar 112012
 

With an appropriate mobile arm support, I hope to some day return to creating art such as Quiet Harbor now part of the Muscular Dystrophy Association Art Collection.

Since I was diagnosed with Inclusion Body Myositis (IBM) 16 years ago, I have been stubbornly maintaining my independence. I have made use of every technical aid that I could find, beginning with canes and walkers and scooters and ultimately graduating to wheelchairs and hospital beds and overhead ceiling lifts. I started with a swing away lift in the back of van to take my scooter with me wherever I went, then bought a van with a ramp and a transfer seat, and ultimately moved to a van with an ez-lok system in the driver’s position. All these were steps to allow me to independently get around. I adapted my bathroom and my kitchen so that I can could continue to cook et cetera. I adapted my studio, even my workbench in the garage. I designed and sewed special shoes, pants, and leggings. No matter what, this disease was not going to get the better of me.

Today I am reluctantly admitting that this is one battle that ultimately I could not win. IBM is too progressive, too relentless, too untreatable. The final straw came when my right shoulder and arm became so weak that I could no longer raise my arm much above my waist. This meant that it was no longer safe for me to drive. It also meant that I could no longer chop vegetables or stir a skillet. It meant that I could no longer hold a paintbrush and create art. And worst of all, it meant that I was no longer an appropriate caregiver for my wife, whose own battle with Myotonic Muscular Dystrophy was not going well.

The first thing I did was have my van converted once again, only this time in the opposite direction. I had the passenger seat moved over into the driver’s seat position and put the ez-lok on the passenger side. This meant that I could pull into the van and lock myself in on the passenger side — provided I had found a willing driver to take me where I needed to go. Fortunately, my friends and family and neighbor have pitched in and I still have been able to get around when absolutely necessary. Perhaps more importantly, my wife, who also can’t drive and who has more medical challenges than I, could get to her various doctor appointments. When drivers aren’t available we are able to get to appointments using the accessible bus transportation called MTS access. It gets the job done, but it is certainly not a convenience. I plan an article on the general subject of bus transportation (and lack there of) soon.

But the really big change I have made is to hire caregivers for the two of us morning and night. The loss of arm strength meant that I was at great risk of being stranded when trying to use my ceiling lift to get into or out of bed or onto and off the toilet. After several close calls and more than a few minutes of hanging suspended in a very painful and awkward position, I realized I simply couldn’t go it alone anymore. It is an expensive adaptation and one that we will not be able to afford indefinitely. But for now it is getting us through each day. In future articles I will talk more about the good points of having caregivers.

I am also searching for a “mobile arm support.” The right one might restore some of the functions of my right hand and could possibly let me try to paint again.

Oct 202010
 

Mike and Beth outside Michael Talbart Advertising in San Diego.

My wife and I were photographed by my business partner, Tal Smith, before we closed Michael Talbart Advertising. Those who know me might recognize the changes Inclusion Body Myositis had made in my appearance.

The last two years of the 20th century also marked the end of my ability to function physically well enough to earn a living. Since my diagnosis in 1996, I had been getting along pretty well by using braces and forearm crutches. However in 1999, it became obvious that I needed to “graduate” to a scooter or wheelchair. I have always been of the philosophy that I should take advantage of any technology available, so I wound up with one of each – a Pride Legend Scooter and a Jazzy Wheelchair, both with elevating seats. I also purchased a van with a lift in the rear that would swing out and pick up my scooter and deposit it in the back. Then I would walk around to the front, hanging onto the van, and get into the driver seat. But as time went by, this process became more and more precarious, and I took some pretty bad falls in parking lots.

I also noticed that my advertising clients were evidencing discomfort when I would show up for meetings, as I was very limited in my mobility and they had to make considerable accommodations. The last straw was when a client had to lift me from my seat at lunch and then pick me up again when I fell in the restaurant parking lot (no martinis involved). I think that up until this point I had felt that my inclusion body myositis was just going to be a distraction and not a truly life-changing illness. But now I could see that it was going to continue to take away my ability to get around and to carry out the normal activities of daily living. I was also finding it more difficult to write, since my fingers were rapidly weakening. So, I reluctantly informed my business partner that we were going to need to close the business and that I was going to retire on disability.

My wife and I decided that we should travel as much as possible while I was still able. That turned out to be a very good decision since today I am unable to travel outside of San Diego County because I can’t be far from my custom bathroom and hospital bed. (Of course, if you’re going to be “stuck” somewhere, San Diego is a pretty nice place to be.)

Our travels introduced us to the difficulties facing those who rely on scooters or wheelchairs for mobility when they travel. We would reserve hotel rooms and request that they be handicap accessible only to learn that the room had been given to able-bodied people instead. If we complained, they would try to ship us off to another hotel in a much less convenient location simply to comply with the ADA regulations. More often than not, we would just rearrange the furniture in the non-accessible room and install a portable elevated toilet seat in the bathroom. Perhaps the worst offender was the Mandalay Bay in Las Vegas. First they refused to help us get our luggage from the front entrance to the lobby, causing me to break my foot when I tried to do it myself. Then they put us in a room for hearing impaired and said that that was the only kind of “handicap” room available in their hotel. We haven’t been back to Las Vegas since.

I’m happy to report that San Diego is blessed with scores of accessible hotels, restaurants, attractions and transportation. I’ll be reporting on many of these in the future.

Oct 042010
 

When your legs are weak or paralyzed and you try to stand or walk, gravity is your enemy. But when you are using a wheelchair or scooter, gravity can become your friend. One of the ways I have maintained my independence despite being unable to stand or walk is by using gravity. I have a wheelchair with an elevating seat. In addition, I have a hospital bed that elevates (the Invacare “full electric” model).

Warning! Rant ahead: Despite the fact that an elevating seat can make it possible for an otherwise immobilized person to independently transfer into and out of bed, on and off the toilet, and on and off a shower seat, Medicare continues to say that an elevating seat or elevating hospital bed is a “convenience” item and they will not pay for it. Fortunately, many manufacturers recognize the need for elevating seats and include them as standard equipment. You will need to find a mobility supplier who knows how to work with you to get what you need.

Transferring from Chair to Bed

With an elevating seat, gravity does most of the work of getting you into the bed.

Once you have an elevating seat, you need to make sure that each place that you want to transfer to is of a height that is about half way between the lowest and highest positions of your scooter or wheelchair seat. For example, if you have a wheelchair that is 20 inches high at its lowest seat position and 26 inches high at its highest position, you would be wanting a bed, toilet seat, and shower seat that are about 23 inches high. This would allow you to slide from your elevated chair to the bed and then slide from the bed onto the lowered chair when you are ready. (See the diagrams I provided with this article.)
Transferring from Bed to Chair

Lowering the chair seat lets you slide out of bed more easily.

The other item of equipment you will need is a transfer board. I strongly recommend the “UltraSlick” board. You can buy the 30 inch version over Amazon, or your own mobility supplier may have it in different sizes if that is not convenient. Important: if you are trying to slide on the board when you are not dressed, be sure to wedge a towel part way under so that you can have it between you and the board. Bare skin, especially wet bare skin, on an UltraSlick board will probably stick like glue and you may need help getting free.

Sep 092010
 

My wife seated on a small three wheel scooter

My wife shopping for her first scooter.


When is it time for a scooter (or wheelchair)?

From the moment I was diagnosed, I have had a simple philosophy about using the various mobility aids that are available to us. I say use them all if they make your life better or safer! I know there are those who feel like using a scooter is “giving up”. But it is important to realize when pride is getting in the way of your future lifestyle. I have seen people trying to walk whose leg muscles are so weak that their knee joints are bending backwards at almost a 45° angle. For me, after I had made several trips to urgent care and come away with casts and bandages, I realized that walking was an adventure I couldn’t afford.

Unfortunately, Medicare doesn’t have a very enlightened attitude about the mobility needs of the disabled. They have always operated on the philosophy that if you were able to get from the bed to the toilet, you didn’t need any more help. Fortunately for me, I was not yet on Medicare when I decided to get a scooter and I was able to write a convincing letter to my insurance company explaining that it would save them a lot of money to get me a scooter so that I would stop falling and breaking things. Amazingly enough, it worked.

Once I had my scooter, a three wheel model (more about that in a later post) it was as though a whole new world had opened for me. I loved taking it for drives around the neighborhood, to the stores, to the library, to the post office. Once again I was able to get out and enjoy the fresh air. As my weakness progressed, a new challenge emerged: how could I take my scooter with me on driving trips, such as on vacation? Fortunately, there was a solution for that as well, although it wasn’t inexpensive.

The same mobility store that sold me a scooter also carried vans that had been modified. The most expensive type are those which have a ramp that automatically deploys so that you can drive right up inside, but I wasn’t in need of that just yet. Instead I purchased a used Plymouth minivan that had a swing-out lift in the rear. With that I could pick up the scooter and place it in the rear of the van and then carefully walk around to the driver side and get in. This worked for several years, until I got too weak in the legs to safely maneuver around the outside of the van. Two serious falls occurred during this process and that told me I was ready for the next level of van.

But before that, I had also reached another milestone–I was outgrowing my scooter and ready to graduate to a wheelchair. In the next article, I will talk about some of the differences between scooters and wheelchairs and some of the many decisions that need to be made when you select one.