Clothing

What to Wear

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.

Dec 232014
 

This photo shows why I haven’t been able to take photos lately.

Inclusion body myositis has left my hands weak and disfigured.

Inclusion body myositis has left my hands weak and disfigured.

Recently I have not had much to say. No, let me correct that. I have not been saying much. I do have a lot to talk about, however I am trying to make some more adaptations to keep up with the progress inclusion body myositis is making on my body. The effects are especially noticeable on my hands and fingers, shoulders, and the ability to speak, sing and swallow. I recently got approval to go on home health and have started receiving regular visits from a speech therapist, occupational therapist and physical therapist.

Not only are my hands and fingers week, they are nearly frozen in one position. this has caused me to temporarily give up photography altogether. Some of you may recall that in the beginning I was using either my iPhone camera or my GoPro camera which was controlled by my iPhone using the GoPro app. I can no longer hold the iPhone in my hand and use my other hand to touch the screen, so that rules out both of those methods of taking pictures. My occupational therapist is working with me to try to find a system that will solve this. When he does (and I am sure he will; he is very clever and persistent) I will do an article about the method used.

My occupational therapist is also working with me to expand upon a scheme I devised to restore some movement in my fingers. I played the piano from the age of three. It was one of my great pleasures and a favorite method of relaxation. IBM took that away from me several years ago. There is a piano in the common area at my assisted-living facility and occasionally I peck away with the one finger of my right hand that is still strong enough to press a key. So I decided to purchase an electronic keyboard, a Yamaha PSR E443, that would always be waiting for me in the “office” of my assisted-living apartment. My theory was that I would be so motivated to produce music that I would play it often and perhaps expand my ability to move the fingers on my right hand. Even more ambitious, I was hoping to be able to use at least one finger on my left hand to take advantage of the auto accompaniment function of the keyboard. However, the extreme weakness of my left shoulder prevents me from using my left hand unless I lean to the right and lock my shoulder in place. Doing that leaves me unable to use my right hand. After working with my keyboard about one month, my right hand acquired enough dexterity that I can play two notes at once using the index and middle finger and then add a third note with my thumb. This is a major increase in hand function and it is also paying off with things as simple as picking up an object from my desk. I am also now able to use two fingers on my left hand, although I have not been able to overcome the problem of lifting that hand and using it in conjunction with my right hand. My occupational therapist believes this is a therapy worth pursuing and he is now working on a system that might allow me to make more use of my left hand by supporting my left arm and leaving my hand free to move. If this works out, it will also be the subject of a blog post.

My physical therapist is trying to loosen up my neck muscles which are so tight that I can no longer turn my head enough to see behind me. This is a big problem when you need to back up a 350 pound wheelchair. My speech therapist is working with me on strengthening the muscles used for swallowing and is teaching me ways to avoid further damage to my weakened vocal cords.

Early next year, I will let you know how everything is going. Meanwhile I wish you all a good holiday season and an even better New Year.

Oct 192014
 

Some more advantages to using an overhead lift together with a hygiene sling.

This simple device could save huge amounts of time and discomfort for people who are non-ambulatory and those who must care for them.

This simple device could save huge amounts of time and discomfort for people who are non-ambulatory and those who must care for them.

In addition to lifting someone safely and easily, an overhead lift offers some additional benefits. You might compare it to taking your car in for an oil change. Just like they put your car up on the rack to have easy access, the caregiver also has easy access to otherwise hard-to-reach areas of the person being cared for. Besides post-toileting hygiene, this helps with skin checks, skin care and changing underwear.

Changing underwear? Here’s how: while the patient is being suspended by the lift, pull the underwear around the bottom and toward the knees as far as possible. Lower the patient back down to a seat. Unhook the leg straps from the overhead lift and then bring them back up, passing them between the underwear and the seat. Lift the patient again and let the shorts fall off. Put a clean pair over the feet and legs and lower the patient once again. Unhook the leg straps from the lift. Pull the shorts as far up as they will go. Put the leg straps on the lift again, being sure they are on the outside of the shorts. One last time, lift the patient and pulled the shorts the rest of the way on. Lower the patient back to the seat and the shorts have been changed. (The process takes a lot longer to describe that it actually takes to accomplish.)

I designed and sewed pants that I could put on by laying them on the chair and  fastening them around me.

I designed and sewed pants that I could put on by laying them on the chair and fastening them around me.

What about the outer wear? Some people use open-bottom garments that are specially made for wheelchairs. Personally I prefer the type of pant that I designed which simply lays flat on the wheelchair seat and I am lowered onto it. Then it Velcros in three places – along the legs and down the front to form a complete pair of shorts that look exactly like a regular garment.

If you are not yet convinced, maybe a demonstration will help. In the interest of public decency I decided not to be the model for this brief video.


Jeff Conner, President and owner of Pacific Mobility.

Jeff Conner, President and owner of Pacific Mobility.

Special thanks to Jeff Connor, President and owner of Pacific Mobility, who recently presented me with a new overhead lift mechanism, courtesy of Prism Medical. He also brought along his panda to help demonstrate the advantages of an overhead lift and a hygiene sling.

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.

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.