Inclusion Body Myositis » Life! disabled

Searching for My Voice

Get Creative, Inclusion Body Myositis, Motivation, Muscle Disease 6 Responses »

May 292013

The Korg nanoKey2 keyboard doesn't have conventional piano keys, but it works well for me.

This stupid disease (Inclusion Body Myositis} wasn’t content with taking away all of my physical activities like running and playing golf and tennis and gardening and cooking. It also took away the strength in my fingers so that I could no longer type (a major loss for someone who made his living as a writer) and so that I could no longer play the piano, something I had done since I was 3 years old.

But those who know me realize I am stubborn and so I have continued to search for other outlets. Recently, I decided to take vocal lessons. I had written a song that seemed to get fairly decent response from those who heard it, but it didn’t take a very critical listener to realize that my voice was untrained. I assumed it was due to lack of practice since there was a time when I had some vocal training.

So I signed up for lessons but after the first couple of sessions I realized that my voice was not getting any better, and was perhaps getting worse. Then I looked at a video of me making a speech to the San Diego City Council 6 years ago, and I realized that my voice had been much richer then.

So I did some more reading and research about the voice and realized that my vocal chords were nothing more than muscles, and unfortunately, that’s what my disease feeds upon. So what has been happening is my vocal cords have been becoming weaker year-by-year. This gives a certain raspiness to my voice making singing difficult for me and unpleasant for listeners. Worse yet, with this disease if you try to strengthen the muscle that the disease is already weakening, it makes the disease process accelerate. So in the 2 weeks of vocal exercises, I had actually damaged my voice more.

So now what? Well, if I’m going to the be sticking around on this planet for a while longer, I need something creative to do. I had tried to learn objective C programming so that I could write apps for the iPhone, but I found that my lack of working fingers made the learning process just way too slow and I gave that up. I am currently working on my memoirs, using voice recognition technology, and that is an interesting thing to do and keeps me occupied for a couple of hours a day, but I need more than that.

I’ve always enjoyed making music, although not having the ability to strike several keys of a keyboard at the same time made it tedious and boring. Then an acquaintance told me he was creating complex musical arrangements using a program called Sibelius. This intrigued me, as it meant I could develop a multi-part composition one note at a time. So that is my latest venture and I must say it is a lot of fun even though once again I have gotten into a brand-new area that has a very steep learning curve.

One interesting new tool I have just discovered is the KORG nanoKey2 keyboard. Most electronic keyboards are built to resemble a standard piano keyboard and as a result the notes are very difficult for me to press. This one has the same layout but the keys are much shallower and require less effort to press. If you are interested, Amazon sells it:

Should anything worth sharing come of my attempts I will post it here. As a start, I am trying to do a remix of my song, “I Won’t Stand for That!”

Sheet Music for “I won't stand for that.”

Bedroom, Daily Living, Get Creative, Inclusion Body Myositis, Outside, Writing 3 Responses »

Apr 222013

Amazingly enough, I have had a few requests for the sheet music for this song I wrote. I have finally figured out how to accomplish that using a combination of Band in a Box and Photoshop. Please feel free to sing my song whenever the spirit moves you. (I’m sure you can improve on my rendition.) Of course, I am reserving the rights for any recorded or published versions of my song. Cick on each thumbnail to bring up that page of the song.
If you have trouble downloading the files, send me an email (mike@lifedisabled.com) and I’ll send them to you as an attachment.

What Can We Do About Assisted Living?

Assisted Living, Bathroom, Daily Living, Home Modifications, Inclusion Body Myositis 3 Responses »

Mar 202013

Every time I explore other assisted living facilities, my bathroom always draws me back to Huntington Manor.

The following is a comment I posted on another blog site. It is in response to an article written by Martin Bayne on Dr. Bill Thomas’s ChangingAging website. Mr. Bayne finds himself in a situation similar to mine. He has begun writing articles advocating for the plight of those of us who need assisted living and for whom their are no satisfactory options. I share his concern and am hoping that I can find a way to add my voice.

I am 72 years old, nonambulatory due to a rare disease (inclusion body myositis), and am living in an assisted living facility. It took me a lot of searching before I could even find one that would accept me. Most said that they would not take care of someone who wasn’t able to stand or walk. My “neighbors” are almost exclusively people 20 years older than me and most are incapable of carrying on a conversation. (no fault of their own, disease and age have damaged important cognitive functions.) The caregivers here are very conscientious, but like most, they are overworked. I am fortunate that I can be my own advocate and thus I get very good treatment.

Every so often, I will check the surrounding area of Southern California to see if something new has arrived that might provide a more stimulating environment. At the end of each search I always return to my room and feel grateful for what I have, because it is fully wheelchair accessible including an enormous roll in shower. Most of the facilities have tiny tub-showers with fiberglass enclosures and little built-in seats that could not possibly accommodate me. As for their “activities” the larger facilities seem to focus on the needs of the least common denominator and provide “sing-alongs” featuring songs from the 40s, bingo, and various childish games. For this, they charge anywhere from $5000 – $7000 per month. By comparison, I like to spend my time studying computer programming via the Stanford University lectures on iTunes. (Or writing this blog.) I know that I am not the only person who is older or disabled but also has a continued desire to learn.

It is obvious that we need a new paradigm for the care of an aging population. As we live longer, more and more of us will develop chronic illnesses that reduce our mobility or our cognitive facilities. In my own case, the ideal solution would be to live in my own home with visiting care givers to get me out of bed and shower and into my wheelchair in the morning and then get me back into bed at night. For most of the day I can be independent except for meals, which I could obtain at a local restaurant or my local microwave. The problem comes from not knowing exactly when I might need help. If I were in bed at night and an emergency arose, what would I do? If, during the day, I dropped something important and couldn’t pick it up, how would I get help? Right now, I can press the pendant that is always around my neck and someone will be around to help me. At home alone there is no such system. The cost of round the clock in-home care is prohibitive and would be a terrible waste of human resources anyway.

My concern is that the movement of for-profit corporations into this field means that any rational and humane solutions will be forever blocked.

Mike Shirk

As I Was Saying ...

Assisted Living, Get Creative, Inclusion Body Myositis, Motivation, Muscle Disease, Myotonic Muscular Dystrophy, Writing 1 Response »

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

Giving My Arm a Rest

Daily Living, Equipment, Inclusion Body Myositis, Mobility, Muscle Disease 4 Responses »

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.

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.

Life After Lymphedema

Clothing, Daily Living, Inclusion Body Myositis, Lymphedema 4 Responses »

Nov 252012

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 …

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

Eulogy

Beth, Chronicles of Disability, Get Creative, Get Support, Inclusion Body Myositis, Motivation, Myotonic Muscular Dystrophy, Our Studio 4 Responses »

Nov 092012

A visual snapshot of Beth's life.

The first time I held Beth’s hand, she looked into my eyes and my heart was stolen. The last time I held Beth’s hand, she closed her eyes and my heart was broken. But the glorious years in between have been more than worth the agony I am feeling now.

The places we went, the love we shared, the friends we made, the children we raised …

Our favorite things to do together were traveling and throwing parties. I always suspected that both were just excuses for a new wardrobe, but as beautiful as she was who could possibly say no?

We would travel by car usually. I liked to drive and she liked to sleep. Once in a while she would wake up long enough to see something along the way. When we returned, Beth would take those visual memories and turn them into incredible works of art. One was Maui jungle, where she managed to distill a week of driving around the island onto a 2″ x 3″ piece of zinc. That image won major awards and the edition of prints sold out.

When I was forced to retire due to my disability, I took up painting as well and we enjoyed our trips even more. We would come home to our studio and commit memories to paint and paper. This was a very happy time. But then I became even more disabled to the point where we could no longer be away from home at night. Beth began losing her eyesight and was diagnosed with her own physically disabling disease.

For a while, we continued to paint, drawing upon the memories of previous journeys. But for the past 2 years, painting simply stopped. Beth couldn’t see well enough and I couldn’t move my hands well enough and the focus of our lives turned to helping each other get by.

And now Beth is gone. But she is still helping me get by. Because she has left me with a lifetime of beautiful memories.

Her loss gives me great pain, but it is a small price to pay for the richness that she has left behind. Beth, I will always love you and I will forever thank you, for having been my wife.

Getting to Know Yet Another Illness

Assisted Living, Beth, Dementia, Inclusion Body Myositis, San Diego Access Issues 4 Responses »

Oct 092012

Beth in the patio of the memory care facility shortly after moving in.

I really appreciate the words of sympathy and encouragement that I have received regarding the latest setback in our lives. I wish I could say that Beth is adjusting to life in the memory care facility, but so far she is not. Just 5 days after moving in, she tried to get up in the middle of the night because she thought I was in the room and wasn’t answering her. She fell and was transported to the hospital. Fortunately no broken bones, just bruises.
I am now trying to learn more about her disease. Not easy since the doctors couldn’t give us a diagnosis beyond some kind of dementia with psychosis but not Alzheimer’s. I’m trying to find a caregiver support group. Not being able to drive and having the terrible public transit system that we do in San Diego just makes matters more complicated. The one good thing about all of this is that I go days at a time without even remembering that I have iInclusion Body Myositis (or that Beth has Myotonic Muscular Dystrophy).

Where Did You Go?

Assisted Living, Beth, Dementia, Inclusion Body Myositis, Myotonic Muscular Dystrophy, Our Studio 16 Responses »

Sep 282012

Beth on the deck of my cousin's apartment on the Gulf coast of Florida, about 39 years ago.

Forty years ago, when Beth and I met, we fell so hopelessly in love we were willing to uproot both of our lives so that we could spend the rest of our years together. We were inseparable, holding hands wherever we went, even on our way to the laundromat where we would sit together and watch our clothes dry. We had two beautiful daughters, now with families of their own. I learned to share her love for art, and we began our retirement intending to spend the rest of our lives painting together. When I became disabled 15 years ago, she helped me cope. Then she became disabled a few years later, as though we needed to share that too.

For the past year or so, Beth has been leaving me. Not out the door or to the arms of another, much farther than that. Her brain is taking her slowly but certainly to a place that I can not visit nor even comprehend. And now this terrible illness, yet to be named despite two weeks of trying by a team of UCSD doctors and psychiatrists, has progressed to the point that the unthinkable is happening. In order for her to receive the kind of care she needs and deserves, she must move to a special facility, and there is no place for me. I can visit as often as I wish, and I will. But when I return to my room, with its ceiling lifts and hospital bed and accessible fixtures, there will be no soft greeting to make this austere environment feel like home. Even worse is knowing that she will also be alone without the hope that I might rescue her from the tigers and lions, snakes and assassins and all the other evil images that come stalking as the light fades. I hope this new place, and new medicine, will make them go away. But even so, I know that the illness has also taken her ability to understand the reasons we are apart. Beth will only know that I am not there, and wonder why the person who once happily spent hours helping her pick curtain fabric has vanished into the murky night.

Tackling Lymphedema - Part III

Assisted Living, Clothing, Daily Living, Huntington Manor, Inclusion Body Myositis, Muscle Disease, Resources 4 Responses »

Sep 152012

My swollen legs.

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.

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

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