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.

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.

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.

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. 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. In the 2 weeks of vocal exercises, I had actually damaged my voice more.

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!”

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.

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.

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.


Oct 142012

Beth at Art Reception

Beth at an art reception last year.

Three nights ago I got those terrible phone calls. The first was from my wife’s new assisted-living facility. She was being rushed to the hospital. The second call was from my daughter who was on her way to meet the ambulance and said she would send her husband to get me. When I got inside the emergency room my daughter met me and said “brace yourself, it’s very bad”. Beth, my wife of 38 years was lying on the bed, a ventilation mask over her face, her chest heaving in response to the high amount of pressure they were using to force air and oxygen into her lungs. My daughter explained that without that she could not survive. Although my wife had a Do Not Resuscitate order, my daughter made the decision to allow them to take this extra step to keep her alive until I could be at her bedside and to give us time to bring our two daughters down from Orange County.

So we talked with her as her body struggled. She managed one-syllable answers and at one point opened her eyes and squeezed my hand. Then our daughters arrived and we gathered around and told Beth how much we loved her (although there really were no words that could possibly say how very much that was).

Beth on the beach with our daughters.

Each summer Beth and our daughters would stay at the beach in La Jolla for a couple of glorious weeks.

The doctor gave her pain killer and a sedative, then removed the mask. We held Beth and continued to talk with her as she struggled to breathe on her own. All too soon, she took her last breath and I felt her fingers relax their hold on mine. My wife, my soulmate, the mother of our children, was gone.

As I write this, there is no way to describe the agony. If I could, I would change places with her in an instant, but I can’t. Somehow I have to make sense of a life that doesn’t include Beth and try to use the time I have left to continue to write and help the world know more about the wonderful woman it has lost.

Spring Ahead Watermedia Painting by Beth Shirk

One of Beth's last works of art, Spring Ahead won many awards and now hangs in my room.

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!

Aug 042012

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

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

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

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

How do you downsize this?

How do you downsize this?

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

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

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

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

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

Index for this series of articles about assisted living.

Introductory article plus updates.

Is it time for assisted living?

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

How we chose the facility we did.

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

What life in assisted living has been like.

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

Jul 132012

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

Beth and Mike in the Huntington Manor courtyard.

Beth and Mike adjusting to life at Huntington Manor.

I may have over promised when I said the next article would be about adjusting to life in assisted-living. I have always embraced change, and therefore I thought this would just be one more change to assimilate.

I didn’t realize this would be a different kind of change. Most of life is marked with milestones of achievement – moving away from home, graduations, first love, first home, marriage, children, a bigger home, promotions, recognitions, vacations, retirement.

Even the downsizing that goes along with later stages of life can be viewed positively as you are shedding excess baggage, allowing you to have more time for travel and fun.

But this is different. If most of life is like climbing a winding mountain road in a sports car eagerly waiting to see what’s around each turn, what we are going through now is like stalling and coasting back down the mountain in reverse, with the certain knowledge you will never make it back home.

However, blaming assisted living for our sense of loss is like blaming your garage for no longer holding a car. Physical and personal circumstances have altered the trajectory of our lives. Well-meaning family and friends try their best to make us feel like we are still part of their circle, but the truth is we are not. We are part of a completely different life, one that is necessarily highly regulated and predictable.

Mike, Drew, Linda, Howard, Jennifer and Beth at Huntington Manor

Family members joined us at the Huntington Manor Summer Picnic.

So how does one adjust? I believe there are some key steps:

1. Accept the change. Dwelling on what used to be your life is a sure path to depression. In an earlier post I said I needed to rewrite my life’s script when I learned I had an untreatable, progressively disabling disease. Perhaps now it is time to tear up the script altogether and improvise!

2. Celebrate the advantages. While assisted living may limit your options, it also can improve many aspects of your life, especially if you have been struggling with the activities of daily living. Being helped out of bed, bathed, dressed and fed a nutritious breakfast is a wonderful gift. So is having help available at the push of a button. Cheerful caregivers bring us water and snacks, make sure we get our medicine, drive us to doctors, serve us lunch and dinner on our patio and help us to bed when we are ready.

3. Find purpose. In my case, I’ve taken on the job of building an internet presence for Huntington Manor by updating their website, adding two blogs, one on facility news and one on cooking for the frail elderly, and a Facebook page. I am also dusting off my old php/sql skills to build a database to be used for administration and marketing. I have also given myself the longer term objective of writing one or more books.

Index for this series of articles about assisted living.

Introductory article plus updates.

Is it time for assisted living?

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

How we chose the facility we did.

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

What life in assisted living has been like.

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

May 152012

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

Mike and Beth touring the English Garden at Huntington Manor Assisted Living.

Mike and Beth touring the English Garden at Huntington Manor Assisted Living.

We are moving to Huntington Manor, an assisted living facility about 5 miles from the single-family home where we have been living for the past six years. This may come as a shock to many who know us and know how fervently I have been clinging to my independence. It comes as an even greater shock to us. However it is not a move that has been made casually. It is the culmination of many months of questioning, analyzing, arguing and soul-searching. The best way to picture what we have been going through is to pretend you are passengers on the Titanic. You’ve been enjoying a spacious stateroom and fine cuisine. Then the iceberg announces itself. You can choose to remain in your comfortable stateroom and hope for the best, or you can fight through the crowds and climb into a lifeboat, with no idea how you will survive that experience. But you know the freezing waters of the North Atlantic are waiting if you make the wrong choice.

For us, that time arrived when we could no longer say that we were each others’ caregivers.

I have been in a wheelchair for 12 years and my wife has been in hers for six. But we have always managed to find a way to be just enough help to one another to get by on our own. Several months ago I began losing what little strength I had in my hands and arms, causing me to stop driving, stop cooking, and start thinking about what to do next.

I am technically classified as “non-ambulatory” and in my case that is an understatement. I cannot walk, I cannot stand, raise my head, or rise to a sitting position without the help of my electric bed. Most assisted living facilities can’t accept a non ambulatory resident. Maybe we should just stay put.

Then at Christmas my wife began having symptoms of a cognitive issue. Whatever is going wrong inside her brain causes her to be very anxious and confused, especially at night. She will get up at two in the morning thinking it is time for her to leave for an appointment. Picture my helplessness lying in bed knowing that I can’t get out before attaching my ceiling lift sling and using it to get into my wheelchair, a process that would take at least half an hour. That is when I realized that it was no longer safe for us to be alone. The waters were rising.

Huntington Manor is an Assisted Living facility in Poway, California

Huntington Manor is an Assisted Living facility in Poway, California

So, back to the search for assisted living. Fortunately we discovered a facility that had been off the radar the first time I looked. It is Huntington Manor, a charming old ranch home that has been converted into a modern assisted living facility with a special emphasis on meeting the needs of the frail elderly. We are neither frail nor elderly but the services they offer are exactly what we need. Best of all, because of their emphasis on an older population, many of their rooms are certified to handle non-ambulatory and bedridden patients – like us.

The owner was very sympathetic to our situation and offered to make some modifications on a new wing of his building to make the transition for us less painful. The most significant change was to give us two rooms at the end of the hall, remove the doors while adding a wall and door in the hall. This lets us be together and also gives us some much needed extra storage space.

Index for this series of articles about assisted living.

Introductory article plus updates.

Is it time for assisted living?

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

How we chose the facility we did.

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

What life in assisted living has been like.

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