Feb 252016
 
On the left, the way we were in 1996. On the right, with some of my grandchildren and great grandchildren, late last year.

On the left, the way we were in 1996. On the right, with some of my grandchildren and great grandchildren, late last year.

Normally, my “Chronicles of Disability” consists of annual reports on the changes in my health over the previous 12 months. I forgot to post a report for the year 2014, but perhaps it’s just as well because there were very few changes – – just more weakness in general. So now we come to this major milestone. It has been 20 years since I was diagnosed with inclusion body myositis (IBM). This rare muscle wasting disease is described as “slowly progressing”. That may be true one month to the next or even one year to the next. But when the person I was in 1996 is compared to who I am today, the contrast is jaw-dropping.

Twenty years ago I didn’t think there was much wrong with me. Yes I was slowing down in my running, and my golf shots seemed to be getting shorter, and I did fall once in a while, so what? I was 55 years old, just normal aging? I could still hike mountain trails, jog (slowly), show up for work every morning, work around the house, go to parties with my wife, take long driving vacations. Life was very good.

Now, I very nearly meet the criteria of a quadriplegic. I can’t move either of my legs or my left arm. I can only raise my right arm a few inches above my waist. I cannot stand, walk, or transfer without the aid of an overhead lift system and a caregiver. This will probably be the last year that I am able to continue feeding myself, unless the new drug (BYM338) gets released and actually works. My fingers don’t bend and my speech is getting quite weak. This is making my writing avocation more challenging and I may need to give it up within a year or so. Unrelated to my disease, but definitely affecting my life, my wife died of her own rare muscle illness in 2012.

My current home features the ultimate "open floor plan". My wheelchair loves it.

My current home features the ultimate “open floor plan”. My wheelchair loves it.

At the time of my initial diagnosis, we were living in a two-story four-bedroom home overlooking the mountains of southern California and a little slice of the Pacific Ocean. Today I am living in 250 square feet in an assisted living facility. The room is comfortable, the view isn’t bad (mostly of an ancient olive grove), the caregivers are friendly and helpful, and the food is very good. My days are spent doing what writing I can, either for Huntington Manor or for my Life Disabled blog, but that work is getting more difficult every day. So instead I am catching up on a lot of movies and television and doing a little reading. I also like to take my wheelchair out on long jaunts through the countryside and down to the local business district of Poway. Huntington Manor is launching a major renovation of the facility and I have been promised one of the beautiful new rooms that will overlook the garden and the hills beyond. That is enough to keep me motivated to stick around until the project is finished in 2017.

When I first started this blog, and when I wrote “Rolling Back: Through a Life Disabled” I suggested that the newly diagnosed read about my experiences to be properly prepared for what lies ahead. Now with a new treatment on the horizon, it is quite likely they may never have to experience this severe of a decline.

I have reposted many of the pictures and captions from the past 20 years. I think they tell an interesting story about the effects IBM has had on one person’s life. As you’ll see, I have remained generally happy and hopeful throughout that time, but I must admit that my general mood has been declining. Recently, I saw a neurologist who lowered my expectations for the new drug by pointing out that it would not be of any use for the muscles that were already dead and that, in my case, most of the muscles are completely destroyed. The most I can hope for is maintaining the minimal capabilities I have now.

By the way, one of the special pleasures I get these days is when someone purchases my book. It’s available on Amazon — just click on the link on this page — seven dollars for paperback and three dollars for the Kindle edition, or free if you are using Kindle Unlimited.

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.

Nov 182013
 
Read more about my drinking problem below.

Read more about my drinking problem below.

It is time for my annual update of “Chronicles of Disability.” However rather than simply cover the changes that have happened this year, I have decided to add some new content. This is partially due to my work on a new book I am writing which will tell the story of the journey (or should I say forced march) that my wife and I traveled through the jungles of disability. My own struggle with inclusion body myositis began in 1985, 11 years before I was formally diagnosed, and it continues to this day.

Part of the new content is a gallery of photographs, some new, some from earlier posts on this blog. My goal is to eventually put the entire visual record of my attempts to adapt to inclusion body myositis in one place, organized in chronological order.

This past year has been very difficult. It began with grieving for my wife who lost her battle with myotonic muscular dystrophy October 11, 2012. That grieving process will probably never end although it does change and has become less intrusive on my daily life. During that time I have also experienced the worst decline of physical function of any previous year. Most of that physical loss has been focused on my shoulders, arms and hands. I can no longer hold a Beefeater on the rocks, a Johnny Walker Black with a twist of lemon, a Cadillac Margarita, or even a glass of Petite Syrah. I also can’t hold a glass of water, but that seems to be a minor inconvenience by comparison. Dressing myself is now completely out of the question as is holding a camera or picking anything up from the table, bed or floor. Eating has been reduced to a process resembling a scene from a Monty Python movie. Getting anything from a plate to my mouth involves a slinging motion that frequently sends food flying in unexpected directions.


Now before this pity party gets out of control, I should point out that I continue to find ways to adapt. For example, there is a terrific acrylic beverage cup on Amazon that I use for coffee, whiskey, and wine. It is lightweight, has a handle that fits my hand perfectly and is relatively inexpensive. I can sling it through the air, provided it is only half-full, and generally get it pretty close to my mouth. (There is a slightly larger mug that I use for water.) As to the photography, that problem was solved when I purchased my GoPro and installed the iPhone app to control it. (See an earlier post.) Eating remains an unresolved challenge although I would rather put up with a messy aftermath then resort to being fed. I can only imagine how the pressure to eat quickly and my swallowing problem would combine, with serious consequences no doubt.


Voice recognition continues to get better with each iteration. Now my new iMac with its Mavericks operating system has built-in voice recognition that is almost as good as Dragon Dictate but has the advantage of being launched immediately by simply pushing the function key twice. I still use Dragon Dictate for the longer projects such as this post.

Nov 252012
 

Reduced Legs after 2 Months

This photo was taken two months after I began using the CircAid® compression garments for my lymphedema.

It has been almost 3 months since I first started using the CircAid® compression garments to reduce my badly swollen legs. Years of sitting in a wheelchair (due to Inclusion Body Myositis) without being able to stand or even move my legs on my own had caused them to develop severe lymphedema, a condition that is not only uncomfortable and unsightly, it can be life-threatening due to the possibility of infection.

I am happy to report that my legs are now almost completely back to “normal”. Since I don’t have any muscles in my legs, it is very difficult to know exactly what they should look like, but I can certainly tell that they are no longer all puffy and swollen. The only bad thing is that the during the time that I had lymphedema, the skin on my legs frequently ruptured and the resulting wounds would be large and difficult to heal and so I have considerable scar tissue on my legs. So my advice to anyone who is beginning to see the signs of lymphedema is to address it right away rather than letting it get as bad as I did. I would add that I found the CircAid® Graduate system did a remarkable job of reducing the swelling in my legs.

Condition of legs before and after applying CircAid garments.

Condition of legs before (left) and after (right) applying CircAid garments. Notice especially the reduced swelling in feet and ankles. The discolored areas are scars from years of lymphedema damage.

On a sad note, my wife recently died and I needed to be able to get into a pair of dress pants for the funeral. It turned out that CircAid® had another garment which worked perfectly for that purpose–it’s called the JuxtaFit Lite. It provides the same type of compression, just not as much, as the bulkier garments I have been wearing. The CircAid® people were kind enough to fit me with a pair of those and I wore them to my wife’s service.

And now, for some lighter viewing …

Pudgy Feet

When your feet are this swollen, you'll try all kinds of crazy things to cover them, as the below video demonstrates.

Sep 152012
 
My swollen legs.

My swollen legs.

My lower leg after one week.

My lower leg after one week of compression with CircAid.

As you can see from these before and after photographs, I am finally gaining control of the chronic lymphedema in my legs. Especially note the improved skin color. I don’t often blatantly promote a product but I am so excited about the progress I am seeing from the CircAid graduate leg garments that I can’t resist telling you about it. The video below is my way of expressing thanks to the CircAid people.

Leg after three weeks.

After three weeks. my legs are nearly back to normal.

Aug 312012
 

Ingrid from CircAid shows Chris and Tess of Huntington Manor how To apply my CircAid garments.

Ingrid shows Chris and Tess of Huntington Manor how to apply my CircAid garments.

Ingrid and Teresa from CircAid® were here today to deliver my new compression garments. They showed the caregiving staff at Huntington Manor how to properly place them on my legs. There are measuring lines up the sides of each leg plus a gauge to ensure that the compression will be uniform.

A nice bonus is that the garments are attractive, especially when compared to the variety of strange things I have been putting on my feet the last couple of years. After taking them off at the end of the day, the improvement in my legs, and especially my feet, was noticeable.

Teresa Kennerknecht and Ingrid Adams from CircAid

Teresa Kennerknecht and Ingrid Adams from CircAid help me show off my new compression leg wear.


The particular model I have is called the Graduate™. There are several other styles available depending on the status of the swelling in your legs. For example if my swelling goes down after a while, I could then move to a lighter weight type of garment such as the Juxta-Fit™ or Juxta-Lite™. But since I don’t walk, the weight doesn’t bother me–although it does mean that my caregivers have a little more work to do when lifting my legs onto the foot plates of my wheelchair.

In Part III, I’ll go into more detail about how these are applied and worn, including a brief video.

Aug 292012
 

Mike has swollen legs due to lymphedema.

I have swollen legs due to lymphedema.

My inclusion body myositis has one very significant secondary illness associated with it – chronic lymphedema in the lower legs. I cannot stand or walk so there is no movement of my leg muscles, and because my muscles are atrophied they are not available to help the natural process of pumping fluid back toward the heart. Over the years as the problem became worse I have tried many strategies for keeping it under control. I also have had to devise a variety of types of footwear to accommodate my grotesquely swollen feet.

About a year ago, the problem became so severe that I began having open sores on my lower legs which would drain large amounts of pinkish fluid. One night it was so bad that I woke up to find the entire lower half of my bed soaked with liquid.

The openings that this drainage caused became serious full thickness wounds and required me to spend many hours at the hospital getting them treated and wrapped.

Because I was still trying to live independently, the most recommended treatment – compression garments – was not a good option, as neither my wife nor I could put them on. As an interim measure, an orthotist whom I had seen for my crooked foot suggested that he could make braces that would apply pressure to help reduce the swelling.

Wearing them, along with following a regimen of elevating my legs at night and for at least an hour each day, have kept the lymphedema from becoming as severe as it was last year.

Ingrid and Teresa from CircAid Medical Products measure my legs for compression garments.

Ingrid and Teresa from CircAid measure my legs for compression garments.

However, once I moved to Huntington Manor assisted living and had care available around the clock, I realized that I could look into the next option of compression garments.

After speaking with two of my doctors and doing my own research, I found a company located nearby, CircAid, that makes a type of compression garment that could be much more easily put on than the standard compression hose. (Even caregivers complain about compression stockings.)

Last week I was measured for one of their products and they will be bringing me them later this week. Once I have worn them for a while I will report on their effectiveness, although I am expecting good results based on what I have read.