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Mar 042014
 

bookdessert
I was just finishing a follow-up visit at the wound care center, when I mentioned my book to the nurses. One of them asked how much it was and I told her it was $2.99 for the Kindle edition. “Is that too much?” I asked her. “What if it was free?”

“That would make the difference of whether I had dessert with my meal that day,” she said.

“Well in that case, the Kindle edition will be free starting this Thursday for five days.” (One thing I have learned is that it is always important to keep on the good side of your nurses.)

Because I enrolled my book in a program called “Kindle Direct Publishing Select,” I have the option of setting the price for the Kindle edition to “free” for a five day period. They offer this as a way to widen the audience for a book. The downsides are that you lose out on the royalties during this time and you risk getting some unfavorable reviews as people who may not be especially interested in such a narrow topic may feel they didn’t get their “money’s worth.”

I am hoping this promotion will also help expand awareness of inclusion body myositis and myotonic dystrophy. So it is well worth my cost.

If you haven’t want my book yet and if the reason you were holding back was at all related to the cost, please take advantage of this promotion. It starts Thursday, March 6 and ends Monday, March 10. The free book offer is only available for the Kindle edition and not the paperback which will remain available at its regular price of $6.99. (See the link to the left of this post.)

Feb 132014
 

The paperback version of Rolling Back: Through a Life Disabled

The paperback version of Rolling Back: Through a Life Disabled

Rolling Back has been published in paperback and is available on Amazon for $6.99 ($6.64 for Amazon Prime members). There is also the Kindle version that costs $2.99. I have provided links to each of them below.

Writing and publishing Rolling Back as been a personally rewarding experience that I wouldn’t trade for anything. Several people have urged me to write another, and I will probably try. However I think I’m ready for a change of pace and may attempt a fiction novel next. I’d be interested to hear your thoughts.

Paperback:

Kindle:

Feb 042014
 

This is the cover for my new book. The art is a slightly modified version of one of my late wife's paintings.

This is the cover for my new book. The art is a slightly modified version of one of my late wife’s paintings.

My book, Rolling Back: Through a Life Disabled, has been published and is available as a Kindle version on Amazon. You don’t need a Kindle to read it, you can read it on any computer or any tablet for smart phone using the free Kindle app. Kindle owners who are Amazon Prime members can borrow it for free.

Rolling Back will be available as a paperback in a few weeks. Right now it is only in the Kindle format, but will be expanded to include other e-readers in three months. The price for the Kindle version is just $2.99. If cost is an issue I hope to be able to offer it free for five days on Amazon. When that happens, I will let everyone know.

Nov 092012
 

BethTimeLine30x20sm

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.

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?

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?

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.

Sep 072010
 

Welcome to Life! (disabled). And note the emphasis. Despite having a difficult disabling illness, I still find a lot of pleasure in living. Much of that pleasure stems from finding – and sharing – new ways to cope as my illness progresses. In this blog I will share some of the things Inclusion Body Myositis has taught me. I am not a medical professional, so please regard this information as personal observations and not medical opinion.