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:

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.

Apr 142013
 

Preparing Work Apron for washing

When my Work Table apron gets dirty, I just remove the masonite panel and throw the cloth portion in the wash.

I have had several requests for the patterns for some of my projects. Unfortunately, by the time I was doing the videos, I had lost too much of my finger dexterity to be able to draw well enough to create a pattern. Instead, I would use voice recognition to dictate instructions to myself. Following are the instructions for making an insulated apron for use in the kitchen.

These instructions can be modified for making a work table, by replacing the insulation and batting with a piece of hard board such as Masonite and leaving one end open.

We are making an apron 24 x 17 with two twelve inch straps with velcro fasteners. (NOTE THAT THERE IS NOTHING AROUND THE NECK!)

For apron:
Cut fabric with four and five eighths inches extra on ends and five eighths extra on sides.
Result is two pieces 33.25 x 18.25.
Cut insulation and cotton batting 16.5 x 20.
baste insulation & batting together with shiny side of insulation out.
Sew two fabric sides wrong side out the long way.
Turn inside out.
Insert filling (insulation, batting, with insulation facing top).
Run stiches across short ends to lock filling in place.
Use a wide roll hem (approx 2″)at each end.
Sew long edges to lock pellon in place.
Baste layers together and use walking foot to quilt the insulated surface.

For straps:

Cut two pieces of fabric 13.25 x 6.25.
Hem the short ends.
Sew the long seams inside out.
Pull them through to be right side out.
Cut two pieces of fuzzy velcro 2″ x 5″.
Straddle the seam with the velcro and sew in place.
Fold the opposite end of each strap and sew together.
Use reinforcement stiches to attach the straps to the hems of the apron.

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 042012
 

Note: At the time this series of articles was written, my wife Beth was still with us. She died October 11, 2012.

There is downsizing, and then there is moving to assisted living. Downsizing presents difficult choices of what to keep and what to take with you. Moving to assisted living presents impossible choices.

One way we managed to deal with it was to simply not make many of the decisions. Instead we had our daughters go through our stuff and make a lot of the choices for us, without us being present. Did we agree with every choice? Of course not. But it at least it let us whittle things down to a manageable size.

Another way to approach it is to choose between what you really need and what you think you simply can’t live without. In my case, since I knew I was going to continue to do work in the website design and graphics arts field, I definitely had to take all of my computer gear and cameras. Plus my manuals on software and programming. Beth wanted all of her art supplies, of course.

How do you downsize this?

How do you downsize this?

Clothing was also easier for me, since I really can’t wear standard clothes anymore. I just needed to bring along half a dozen of my specially constructed pants, and a dozen or so shirts. Plus some jackets.

Beth wanted to bring enough to fill several closets so we compromised by storing winter clothes off site and bringing all of her summer clothes. Then we will have to make the switch in the fall and hope we guess right on the weather. I also gave her half of my closet for coats.

Then there are the keepsakes. How could we possibly get rid of any of the vases that people had given us over the years? Well we had to, and every few days we will remember one that would’ve been just perfect for a particular location or occasion. The other really big issue was Christmas decorations. We have been allowed to store some here underneath the facility in their basement, but that still begs the question of what we will do with them come holidays. Perhaps we will be able to use some in a common area here at Huntington Manor.

It’s my belief that the key to this whole process is to try your best to live in the present. Every time we start thinking about things we left behind it becomes difficult. But in truth, nothing we left behind is needed for our daily lives. And the real memories aren’t stored in vases or garment bags. They are in the mind.

Which reminds me to return to working on my first book, “The Society of the Creek.” It is a book about childhood, written for an adult audience. I plan to post some excerpts here.

Index for this series of articles about assisted living.

Introductory article plus updates.

Is it time for assisted living?

Making the decision to move to assisted living, emotionally, practically and financially.

How we chose the facility we did.

Deciding what to take, what to leave, how to adjust our expectations.

What life in assisted living has been like.

How can we make assisted living better for the physically disabled?

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.

Aug 182011
 
My shorts with seams removed, ready for hemming, velcro, etc.

My shorts with seams removed, ready for hemming, velcro, etc.

For the past few years, putting on pants has been an hour-long process. Because I can’t stand, I would start the pants over my legs, then return to bed to finish getting them up. By the time I was through pulling, trying to roll, and cursing, I was almost too exhausted to get back out of bed.

Then a few months ago, I lost the ability to slide into bed and started using a ceiling lift. Don’t know why it took me so long to think of this before, but I simply ripped out the seams of a pair of jeans shorts at strategic locations. I removed the stitches along the inside of both legs and then up from the crotch to the beginning of the zipper. Then I removed the zipper itself and replaced it with Velcro. I also added a bit of fabric to the inside of the legs and put Velcro there. I added a fleece panel for comfort and privacy.

My shorts, waiting for me to drop in.

My shorts, waiting for me to drop in.

Now I no longer have to return to bed to dress.  I simply lower myself (overhead lift) to the wheelchair where I have the pants laid out flat and then close them up. Takes a couple of minutes instead of an extra hour. I also no longer have to struggle with pulling my pants out from under me when going to bed or using the toilet.
Wearing my shorts

Not a fashion statement - more like a declaration of independence.