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.

Jul 212013
 

Mike wearing GoPro

Here I am wearing my new camera. I just have to be careful not to nod my head if somebody waves to me!

Every time I think I have hit upon a pastime that I can continue to pursue despite the progression of my illness, I discover how wrong I was. When I was forced to give up work, I took up painting. That lasted for 10 years until my arms and hands became too weak to guide a brush. So I decided to take up writing a blog. But that meant I had to overcome the weakness of my fingers – fortunately voice-recognition was improving and it is a pretty good substitute. However the other part of writing a blog is photography. Over the past few months my hands and arms have become too weak to hold the camera or cell phone and press a shutter. Since part of my new “job” now that I am living at Huntington Manor assisted living is maintaining their website and blog, photography is a very important part of my work. I was about ready to throw up my hands and quit (except I cannot throw up my hands anymore) but then I was watching a NASCAR race and one of the cars was sponsored by GoPro. I had heard the name before and knew that it was some kind of camera system, so I looked it up on the Internet. I discovered that the GoPro was a very compact camera that had been designed by surfers to allow them to make videos of their rides. It soon spread in popularity and was used by skateboarders, skiers, model airplane builders, free base jumpers, and just about anyone who wished to make a video record of their exploits. It came with a waterproof housing of course but that did not interest me so much. What really caught my attention was both its light weight and the fact that it could be controlled remotely using an iPhone app.

I visited my favorite store (Amazon.com), read about the various models and ordered the GoPro Black, the one with the highest resolution. I also ordered the special mounting system that goes around the head. Now I have a camera system that I can take with me without having to hold it in my hands, and I control all of its functions from my iPhone resting on my lap. I have been using it for a couple of weeks now and have already produced a major video for Huntington Manor as well as taking the number of other photographs. It does not have a zoom, but it has the capability of taking very high resolution video, double the size of high-definition, which means that I can use video editing software to zoom in on sections that I have shot, without winding up with fuzzy, pixelated video. Below are my first videos produced using this camera.

I have included this link to the GoPro camera description on Amazon in case anyone is interested in getting one for themselves. There are three different models, but I highly recommend getting the highest resolution “Black” model which would then allow zooming in postproduction.

This is a video I made about the Huntington Manor Summer Picnic. It includes the food preparation in the kitchen as well as the event itself. All the video was shot with the GoPro camera, and edited using Final Cut Pro Xon my iMac. The background music was created using Band in a Box, The only way I can create music these days is using that program. I can use one finger to type in the chords and a simple melody and it does the rest.

Here is another video shot with the GoPro. I placed it near the bird feeders at Huntington Manor and from a distance waited for the goldfinches to arrive and then started the camera recording. The video was shot at 120 frames per second to produce the slow-motion effect.

Jun 282013
 

Dear bidet, you have no idea how much I have missed you for the past 24 hours.

After struggling with inclusion body myositis for more than 17 years, it was a bout of constipation that finally sent me to the hospital. After 17 days, I owed too large a debt to my toilet to ignore the problem any longer.

I checked into Scripps Green Hospital late in the afternoon. I was in my Permobil C500 power chair, but I was forced to abandon that for a gurney. The hospital staff seemed shocked when I told them that I could not stand up and transfer, they would have to find a way to lift me. A Hoyer lift I suggested. They shook their heads. “We will get a lift team,” one orderly said.

Silly me, I expected to see a few rejects from the San Diego Chargers show up. Instead, it appeared that their lift team consisted of anyone who was not on break at the moment. I tried to explain that I had contractures on my left arm and left leg and that I would be no help whatsoever, not because I did not want to, but because I could not. Nevertheless, they each grabbed a limb and said “one, two, three!” and lifted. I have a fairly high tolerance for pain, and even when something really hurts I try not to make too much of it. I literally screamed out loud at the top of my lungs. But on a positive note, they didn’t drop me to the floor. This process was repeated when they transferred me to the x-ray table, then transferred me back, then to my final destination––a bed in room 466.

At last! Oh how wrong I was. You see in order to cure my bout of extreme irregularity they were going to administer “GoLghtly” which is mostly used to prepare for a colonoscopy. It makes you Go, but certainly not Lightly. In my case it was a way to force the issue. After drinking a couple of quarts of the stuff, I was ready for the next phase at about 3 am. A nurse’s aide came in response to my call button (eventually) and I explained what was about to happen. She extended her arm and wondered if I needed help to the toilet. Obviously the second shift had not been told about my condition. When I told her that I could not walk, stand, or even roll from side to side, she left quickly in search of help. Help consisted of two more aides and a bedpan.

Their technique was simple, but brutal. They would shove me to one side of the bed, rolling me in the process, then put a very uncomfortable plastic thing beneath and roll me back the other way so that I was perched on top of it. Now my pain was complete. In order to shut me up, they brought in several more pillows and placed them in areas that bothered me the most. Of course the entire process had to be repeated to remove the pan. And both processes were repeated five more times during the night.

By morning, I was declared “fixed” and a nurse asked if I would like to have breakfast. You would not think I could have an appetite after all that, but since I had not eaten for nearly 24 hours, I let them bring it to me. I don’t need to tell you what hospital food is, but fortunately it was not possible for me to eat any of it. My dysphagia means I must be sitting upright but the hospital bed wouldn’t take me to that position.

“Can’t you just sit on the edge of the bed with your legs dangling over the side?” the nurse asked. Once again I had to explain about having no upper trunk support. So they put the breakfast on the over-bed table and shoved it up close to my face. Of course I could not raise my arms high enough to even pick up a fork, let alone get something to my mouth. When the nurse returned and saw that I had not eaten anything, she offered to feed me a few bites. A few bites was all it took to send me into violent coughing spasms whereupon she promptly decided I needed a consult with a respiratory therapist and a speech therapist. For that matter, why not also have occupational therapy and physical therapy? (I was on Medicare with a good supplement after all.)

So, for the three hours before lunch, I was visited by all of them plus a case manager, charge nurse, resident doctor, dietitian and nutritionist. Then came lunch and once again they tried to feed me, and once again it was nearly impossible. By then they were ready to fill out my discharge papers and send me home. But there was one last minor detail. They had to get me out of the bed and onto my wheelchair. This time they did get a Hoyer lift, but none of them had used one before, so it was a part scary/comical procedure that lasted for the better part of half an hour and ended with me kind of in my wheelchair.

Now I am back at Huntington Manor, sitting in my very comfortable Permobil, secure in the knowledge that soon my two caregivers will use the overhead ceiling lift to painlessly lift me from the chair and place me in my bed.

I had asked one of the nurses why the hospital was not better equipped to handle people like me. Her answer was that they had all kinds of patients, not just people like me. Of course that is true, however local grocery stores also have all kinds of people shopping there, but that does not prevent them from having wide unobstructed isles, handicap parking out front, and automatic doors. Time and again I read of people complaining about the inaccessibility of healthcare facilities, yet nothing is ever done about it. if I were a little bit younger I might take this up as a cause. It is not that I am too old for the work, it is just that I know I would never see any progress during my lifetime.

Feb 192013
 

My wife had myotonic dystrophy. It was the underlying cause of her early death. Although we knew of her condition for the past 7 years, we were unaware just how life-threatening it could be. Unfortunately, her doctors were also ill informed since myotonic dystrophy is not a common illness. I am presenting some information here in the hopes that it could be useful, and even life extending, for others who may have myotonic dystrophy.

Myotonic dystrophy is caused by a defect in a specific area of chromosome 19 called DMPK (dystrophia myotonica-protein kinase).  It is normal for protein sequences to repeat a few times, however when a particular sequence in this region repeats more than 35 times, a person is said to be affected by myotonic dystrophy. This was discovered in the early 1990s and since then, suspected cases can be confirmed by a genetic test. Myotonic dystrophy is an inherited disease. It is passed from parent to child in an autosomal dominant fashion. This means that if one parent has the disease, their offspring each have a 50% chance of also being affected. Moreover, the disease tends to become worse with each successive generation. Thus, if a parent had a mild form of the disease, their child could have a classic or even a congenital form.

Myotonic dystrophy is classified based on the number of times the protein sequence is repeated. Fewer than 35 repeats–normal, no disease indicated. 35 -100 repeats–mildly affected by myotonic dystrophy. (However, their offspring have a 50% chance of developing the illness, possibly in a stronger form.) 100 – 1000 repeats–the person has the classic form of myotonic dystrophy. Beth had 212 repeats and was seriously affected..

Until 1992, myotonic dystrophy was one of many neuromuscular diseases that was difficult to diagnose with certainty. Since that time, the availability of genetic testing means that a person can be determined to either have the disease or not. Unfortunately, having this diagnostic capability for such a short time means that there have been many undiagnosed cases and therefore there are large numbers of people today who may be at risk for the illness and not know it. In my wife’s case, we will never know for certain which of her parents had the disease, although we are fairly certain it must have been her mother. For those with the mild form, they may have a normal life span with little physical symptoms. The most typical symptom would be early-onset cataracts, the possibility of diabetes, and the typical myotonia (the inability to relax one’s grip easily).

Beth wobbling along at the edge of the Grand Canyon in 2004. A year later she would be diagnosed with myotonic dystrophy.

For those with the classic form, there are many symptoms affecting various muscles and organs. These include weakening of muscles in the forearms and hands, calves and feet, shoulders back and face, and diaphragm. Those weaknesses can affect a person’s ability to walk, keep their balance, perform fine motor skills with their hands, and breathe. Men may experience infertility. Women with this form of myotonic dystrophy frequently have difficulty with childbirth. (My wife suffered through many hours of unproductive labor before eventually giving birth via cesarean section to our first child.)

Weakness in the facial muscles can cause a person’s appearance to change rapidly. There can be loss of hair on the front of the scalp, drooping eyelids and an open mouth. These weaknesses can also cause frequent jaw dislocation, and difficulty swallowing.

Cataracts are very common, and an alert ophthalmologist can be the first to raise the possibility of myotonic dystrophy with the patient because the types of cataracts have a distinctive appearance when they are caused by myotonic dystrophy.

There is an increased likelihood of diabetes and cancer among those who have the classic form of myotonic dystrophy. They will also be more likely to have digestive and intestinal issues.

There are numerous hormonal consequences, including reduced sex drive, early infertility, insulin resistance, and thyroid problems. There can be increased chance of gallbladder inflammation, problems with the pancreas, and chronic constipation.

The most common causes of death for those with myotonic dystrophy are respiratory failure and cardiac arrest.  Most articles you will read about myotonic dystrophy recommend yearly EKGs because there is the likelihood that cardiac arrhythmia may develop. What they don’t say, is that there should also be a 24 hour Holter study done from time to time, as this is more likely to catch an arrhythmia that comes and goes. Thanks to having an autopsy performed following my wife’s death, we now know that she had been having episodes of insufficient blood flow to her brain for some time that had not been detected by either the annual EKG or MRIs. The MRIs would have shown more if we could have used contrast medium with her but unfortunately her kidneys had been damaged to the point where contrast medium was not possible. She died when a combination of factors overwhelmed her.

It is especially important that an anesthesiologist know about a patient’s status with myotonic dystrophy as the patient will be at much higher risk of respiratory issues.

Here are some things to look for:

An unusual walking gait where the foot seems to slap down on the ground, preventing the normal flowing motion of a healthy walking motion.  There may also be an increased likelihood of falling.

Early-onset cataracts, especially “Christmas Tree” cataracts on the back of the lens.

Difficulty relaxing ones grasp on an object.

Excessive sleepiness.

Download large format poster.

Important disclaimer: I am not a medical professional and what is on this page should not be considered medical advice. I have read a great deal about my wife’s illness and have attempted to present the information in a more readable fashion here. I am providing you with the links to my sources. You should also know that I’m only covering the mild and classic forms of type I myotonic dystrophy. There is also the congenital form which can affect infants at birth and type II myotonic dystrophy where a different gene is affected and the disease is generally not as severe.

http://mda.org/sites/default/files/In_Focus_MMD.pdf
http://en.wikipedia.org/wiki/Myotonic_dystrophy
http://medicine.yale.edu/neurology/divisions/neuromuscular/md.aspx
http://ghr.nlm.nih.gov/condition/myotonic-dystrophy

Jan 292013
 

Two and one half years later and no longer able to paint, I'm trying to learn how to use the iPad and iPhone from the inside out.

I hope those who visit my blog from time to time will pardon my recent lack of activity. Some of the earliest readers may recall my chapter that dealt with rewriting life’s script when things don’t go the way you expected or hoped. Well I am once again needing to tear up the pages, or maybe hit the delete key, and put in some fresh paper (or RAM space).

The recent death of my wife left a big hole in every day and in every concept of my future. Couple that with the recent severe decline of strength in my upper body which deprived me of the joy of painting and I have been in a bit of a bad space lately. I realized that I needed a new challenge, one that relied more on mental gymnastics than the other kind. So I gave myself the improbable task of learning to write applications for the iPhone and iPad. Of course as soon as I got into trying to learn about that, I discovered how little I really knew about programming. So for the past few weeks I have been trying to learn C, C++, and Objective-C, along with the Apple integrated development environment called Xcode.

Fear not, I have not wandered off into some digital wilderness, as I fully intend to use my new skills, once acquired, to develop an app or two related to disability and to assisted living. I also might try to develop something related to the two diseases that I know so well – myotonic muscular dystrophy, which claimed my wife, and inclusion body myositis, which is trying to claim me.

I even might have some fun with an art application. But, first things first, I still have a lot of learning to do. So these days and nights I sit in my room at the assisted-living facility and watch instructional videos and try to do the exercises. It’s sort of like being back in college except I’m not eager to graduate.

Although I can no longer physically produce tools and garments that assist with the life of a disabled person, I can still think about things that might be useful. I am also going to be doing more articles soon about life in an assisted living facility, as it is really quite an adventure.

I am enjoying getting to know more about my late wife's early years.

The new blog site I am creating in memory of my wife, Beth Shirk, is underway. You are welcome to follow its progress.

Mike

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.

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.

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.

Aug 222012
 

As a writer, how can I find my voice when my fingers have always done the talking?

I have been a professional writer most of my life. For the first few years, I used a Smith-Corona typewriter. Then along came the IBM Selectric and I was in heaven!

When the correcting version came out I could hardly contain my excitement. During this time my typing speed kept improving until I was typing between 60 and 70 words per minute without errors – faster if I didn’t care.

Then, in 1980, I bought one of the first personal computers, installed WordStar and my typing speed increased even more. I could literally type 100 words per minute. Now what does this have to do with writing itself? In my opinion, it has a lot to do with it. One of the secrets to being a good typist is to not think about which keys you’re going to strike, just let the fingers fly up across the keyboard automatically, much as you would if you were a jazz pianist.

I really believe that this enabled my mind to be actively and creatively composing sentences while my fingers took over the mundane task of expressing my thoughts in letters. I also believe that is why I am now finding writing to be so much more difficult.

Using My Thumb to Type

As a writer, I'm now all thumbs.

My illness, inclusion body myositis, attacks various muscle groups, including the finger flexors. As result my fingers are now too weak to press the keys of a computer keyboard. I have two choices – I can either type with the thumb of one hand while using the thumb of the other hand to press the shift key when needed, or I can do as I am right now and use voice recognition by speaking words into my iPhone.

The problem with either method is that it forces me to think about the mechanics of producing each word, whether I am typing it one letter at a time with my thumb, or speaking it. This process seems to prevent me from letting my mind run free to be more creative in my phrasing. I can see a dramatic difference in the way I write now compared to the way I once was able to write.

I am interested in hearing from other writers who are either facing a similar predicament or those who think they have insight that might be of help to me. Please leave your comments following this post. Thank you!

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.