Jul 182015
 
"Point Pinos" is one of two of my paintings (along with one of my wife's) hanging in the permanent art collection of the Muscular Dystrophy Association.

“Point Pinos” is one of two of my paintings (along with one of my wife’s) hanging in the permanent art collection of the Muscular Dystrophy Association.

Ten years before this blog began, and several years before the term “blogging” came into general use, IBM had taken my life in a new direction. Besides forcing me to give up a career as a writer and advertising agency owner, it had herded me into a new career as a watercolor artist. Within months of closing the doors to my ad agency, I was opening books on painting techniques, design theory and color harmony. I joined an outdoor painting group, then became a member of the San Diego Watercolor Society – one of the largest groups of its kind in the world – and soon became a board member and eventually president.

This was   my booth at the Hotel Intercontinental in 2003 for The Myositis Association national conference.

This was my booth at the Hotel Intercontinental in 2003 for The Myositis Association national conference.

This new avocation gave me such pleasure and added so much meaning to my life that I had to share the news. I talked to members of our local Myositis Association (TMA) support group and they encouraged me to take my message to the national conference that was coming up in Houston. This was in 2003. The organizers of the conference also encouraged me and gave me a booth where I could display several paintings and hand out literature.

 "Monterey Bay" (15 " x 22 ") will be auctioned  at the 2015 national conference of the myositis Association to raise money for research.

“Monterey Bay” (15 ” x 22 “) will be auctioned at the 2015 national conference of the myositis Association to raise money for research.

Twelve years later, I have once again been approached by TMA to participate in their national conference in Orlando. Of course I cannot travel there, but one of my paintings is making the trip, along with this updated version of my literature (below). The painting will be auctioned with the proceeds going to benefit research into myositis. One session of the conference is about finding purpose in life following disability, so I am very pleased to participate in this small way.

 If you click on this image of the front and back cover it will make it large enough to read.

If you click on this image of the front and back cover it will make it large enough to read.

 This is the inside of the brochure where I tell the story of becoming an artist after being diagnosed with inclusion body myositis.

This is the inside of the brochure where I tell the story of becoming an artist after being diagnosed with inclusion body myositis.

They titled this session “Act II” but if I could be there in person I might add that myositis is not necessarily a two act play. It has been nearly 5 years since I was forced to give up painting due to seriously declining strength in my hands and arms. Of course that led to yet another exciting pursuit – – writing a blog and a book taking advantage of voice recognition technology and electronic publishing. (Which reminds me, my book has been published for nearly a year and a half now and sales have slowed down considerably after beginning with quite a flourish. I didn’t publish the book to make money, in fact I have given away nearly as many as I have sold, but I am curious why it seems to have been forgotten. It was written to help people with myositis, especially those newly diagnosed, because this is not a common illness and coping with it is not a common skill. You don’t even have to pay for the book if you don’t want to because Amazon Kindle owners can read it for free. I’ve included the link below.

Jul 042015
 

 This cutaway view shows how the pool noodle is placed under the fitted sheet at the side of the bed.

This cutaway view shows how the pool noodle is placed under the fitted sheet at the side of the bed.

As my legs continued to become weaker I started waking up with sprained ankles. My feet would simply fall over toward the outside, stretching the tendons. I knew there were special boots you could buy to wear in bed, but that would add just one more complication to an already very complicated nighttime routine. I discovered the solution while watching the activities director at our facility leading an exercise class.
Seeing an exercise class using these pool noodles gave me inspiration for solving my falling foot problem.

Seeing an exercise class using these pool noodles gave me inspiration for solving my falling foot problem.


She had purchased some “pool noodles” which they were using to strengthen their hands and arms. I realized that having one on either side of my bed would give me a comfortable place to rest my feet. One of the advantages of being nearly completely paralyzed from the waist down is that once a foot is placed in bed, it won’t go wandering around during the night.
 Before I made this modification, my feet were to  weak to rest in an upright position and would fall over during the night. By morning both ankles would be sprained.

Before I made this modification, my feet were to weak to rest in an upright position and would fall over during the night. By morning both ankles would be sprained.


So for three dollars, I bought one of the 3 inch diameter noodles, had it cut in half and placed at the foot of the bed on either side under the fitted sheet. I’ve been using it for several weeks and it works perfectly.

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.

Jun 162015
 
Here is my new mattress, following final inspection. You can see the individual air bladders that are inside. Once the cover is pulled over and zipped shot it looks just like a regular mattress. For the curious, the rest of my equipment consists of the electric bed, the pump unit, the DVR, Blu-ray, Roku, smart TV, emergency call button on the wall and one of the supports for the overhead lift system.

Here is my new mattress, following final inspection. You can see the individual air bladders that are inside. Once the cover is pulled over and zipped shut it looks just like a regular mattress. For the curious, the rest of my equipment consists of the electric bed, the pump unit, the DVR, Blu-ray, Roku, smart TV, emergency call button on the wall and one of the supports for the overhead lift system.

Inclusion body myositis usually begins with weakness in the legs, hands, or, sometimes, the swallowing muscles. Eventually it gets around to all of them and a lot more however. One of the results is you may lose the ability to roll over in bed. That happened to me several years ago leaving me vulnerable to skin problems. Eventually they got bad enough to need nursing help from a home health agency. One of the first things they did was order a low air loss alternating pressure mattress. It consists of 20 air filled chambers that take turns fully inflating. They also are constantly releasing a small amount of air to keep the skin supplied with oxygen. These two functions worked very well for me and also provided the best sleep I have had in years.

Unfortunately, as I reported in a post two years ago, once I was getting better, Medicare took away the mattress. As we all know, Medicare takes little interest in preventing illness, preferring to spend much more money once we get sick enough.You can read the entire original story here.

To get around their silly game I bought my own mattress on Amazon, exactly like the one they had provided. I paid just a few dollars more ($600) for the entire mattress and pump system than Medicare was paying each month.

After two years of good service, the pump that put air into the mattress gave out. (Actually, just a cheap little pressure gauge failed but that was enough to make the entire mattress stop working.) The point is what happened for the next four days until my replacement system arrived.

At first, I felt I had only two choices: don’t sleep on a completely deflated mattress, or don’t sleep on one so overinflated it feels like concrete. For the first two nights, I got no sleep whatsoever. Then on the third night I worked out a system where I could use a remote control in bed to turn the pump on and off. Of course I needed to be awake to do this effectivelyWhich turned out to be not difficult since there was almost always an alarm sounded. On those nights I got two or three hours of sleep each. Regardless, each morning my backside would be as sore as if I had been taken to the principal’s office several times.

I guess you can call this a backhanded testimonial to the efficacy of a low air loss alternating pressure mattress. In fact, you might want to buy two.

May 252015
 

As a degenerative physical disease such as myositis progresses, our coping methods also progress. In the beginning there are inexpensive physical aids such as canes and walkers and often the help of a spouse or family member. Then come more expensive pieces of equipment such as wheelchairs, hospital beds, adaptive toilets, lifting mechanisms and modified vans. Next may come home renovations or moves to homes with more appropriate layouts. Next we may hire caregivers from home health agencies. Finally comes the really big decision of whether to enter a facility. Recently I have noticed more discussion about assisted living or skilled nursing facilities among the myositis community. I can only speculate that as awareness grows and diagnoses increase in number more of us have advanced to the point we can no longer live independently.

It is difficult to write a general article about the need for assisted living or the experience of residing in such a facility because there is no federal standard. It has been left to each state to create its own definitions and requirements. In some states such as California, assisted living facilities may approach the level of skilled nursing in the amount of care they are allowed to provide. In other states assisted living can only provide minimal assistance with activities of daily living. For those states with more restrictions, skilled nursing may be the only option. Of course that means more expense and less freedom.

I wrote a series of blog entries on the subject of assisted living and much of the content is still valid especially for those living in a state such as California. I have provided links to each of those blog entries below. I am continuing to do research on the subject and someday I might turn this into a book. For now I will expand on the series of articles I have already written, with special emphasis on the unmet needs of the physically disabled.

Follow these links to read more:

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?

Feb 082015
 
 With surroundings like this I couldn't give up on photography.

With surroundings like this I couldn’t give up on photography.

 Heading out to shoot some stills and videos. See the video below to learn how my system works.

Heading out to shoot some stills and videos.


In my previous post, I explained that losing nearly all the muscles in my hands and arms and taken away my ability to hold the camera and press the shutter. Today I am happy to report that my occupational therapist has created a system that attaches to my wheelchair and restores my ability to do photography. Actually, it turns my wheelchair into a rolling tripod. Couple that with the ability to tilt, elevate, and roll, and my new system gives me more capabilities for taking stills and videos than before. Please watch the video below to see how it all comes together.
Occupational therapist John MancIl and his bag of tricks.

Occupational therapist John MancIl and his bag of tricks.

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.

Oct 012014
 

As you may know, I recently launched a series of blog posts discussing the benefits of overhead lifts and questioning why assisted-living facilities were not using them in this country. To gather data I had a meeting with the owner of Pacific Mobility (installed my lifts) and representatives of Prism Medical (manufactured my lifts). during the course of the meeting, someone mentioned that Sunrise Senior Living had a policy against lifting residents without mechanical assistance.

As soon as I approached the entrance of Sunrise at La Costa, I knew this was a place I wanted to live.

As soon as I approached the entrance of Sunrise at La Costa, I knew this was a place I wanted to live.

After the meeting I looked them up and discovered Sunrise was one of the the original assisted living programs for the United States and has grown to about 300 facilities in the US, Canada and Great Britain. Their founders were from Holland and their story is worth reading. You can find it on the Sunrise website.

Sunrise has facilities in the San Diego area that I had previously ruled out because of the locations. However I decided to give Sunrise at La Costa a call. I learned that they that do have a policy against most manual lifting however they use floor lifts to accomplish it. So of course I told them all about the advantages of overhead lifting and directed them to this site. After watching the video and reading my previous post, they decided to ask regional management for permission to give it a try. Hallelujah! They agreed.

Beautiful views of Batiquitos Lagoon are just a few minutes away by wheelchair.

Beautiful views of Batiquitos Lagoon are just a few minutes away by wheelchair.

I learned that living here would cost me nearly double what I have been paying at Huntington Manor. But since I had made such an issue of finding another facility that would accept me and my lifts I felt I had no choice but to make the move. I’ve been here several weeks now and am truly enjoying this new environment. For one thing, I am only a 30 minute wheelchair ride from the ocean. For longer trips, the local bus stops right in front every half-hour seven days a week. Also, because I am disabled, I get to ride for free on both the bus and the local rail transit.

In an attempt to make my relatively meager funds hold out, I have taken on two freelance clients. Fortunately since my background is in marketing consultation and writing, I can accomplish both mostly online with the aid of voice recognition.

Pacific Mobility owner Jeff Conner presents me with a brand-new overhead lift mechanism courtesy of Prism Medical.

Pacific Mobility owner Jeff Conner presents me with a brand-new overhead lift mechanism courtesy of Prism Medical.

More news to lift my spirits: Last week, Jeff Conner, the owner of Pacific Mobility stopped by with a free lift, courtesy of Prism Medical and installed the lift along with brand-new batteries.

By the way, this does not mark the end of my series on the advantages of overhead lifts. There are still thousands of assisted living and skilled nursing facilities that have not seen the light. Perhaps even more importantly there are countless caregivers trying to transfer and transport their disabled loved ones without the aid that an overhead lift could provide.

Note: if you reached this page from my series of posts on the subject of assisted living, here is how to get back:

Index for 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?

Jul 292014
 

Ceiling Lift installed in my room at Huntington Manor

The owner of Huntington Manor was willing to have my ceiling lift installed.


So why aren’t more facilities using them?

A few weeks ago, I decided to find out. It seems that the answer may be very complicated, although, like many questions, money and politics may be at the root of the issue. In the following posts I will share what knowledge I have been able to gain through talking with facilities, manufacturers, and installers. For this first post, I simply want to make everyone understand how simple the process of doing a transfer with an overhead lift can be. Those of you who have followed my blog through the years will recall the nightmare experience I had at a local hospital when they tried to transfer me with brute force. I weigh 220 pounds and it would take a lot of brutes to get me out of my chair.

So please watch the video below with that in mind. It is only four minutes long, because that is as long as it takes a single caregiver to smoothly and safely pick me up from my bed and put me in my wheelchair.

However, I know there are many other factors holding facilities back. Besides money, some are concerned whether it would be safe to install a lift within one of their rooms. I will show the many types of installations and explain that there is one for almost any situation. Others think it would be an expense that they might never recover. There are plenty of case histories to put that fear to rest. Then there is the misperception that most facilities don’t use overhead lifts. While this may be true in California and many other states, it is definitely not true in Europe and Canada. What do they know that we don’t? That will be the focus of one of my articles.