San Diego

A wheelchair’s eye view of the city’s attractions and barriers.

Jun 112016
 

mapI don’t know how often pulse oximetry and seismology come together but it happened to me a couple of nights ago. I use a ventilator at night because inclusion body myositis has dramatically lowered my ability to breathe. During the day I get by okay, but when I lay down at night, I don’t do a good job of getting air in and out. Recently I noticed that I was more fatigued in the late afternoon and even dozing off to sleep when I didn’t want to. This made me wonder whether my settings were still good on my ventilator or if they needed to be increased. I knew from past experience that this would be a multi step process. First I needed an appointment with my pulmonologist to get an order for overnight pulse oximetry. Then go to the sleep clinic, another two hour bus ride (four hours round trip) to pick up all of the equipment and bring it home. After spending the night with the oximeter recording my pulse oxygen level I would have to pack it up and make the same bus trip once again to the sleep clinic. Altogether this would cost me $27 in bus fares, plus 3 lost days.It would also cost Medicare a lot of money to pay for the doctor visit and the equipment rental. Surely there must be a better way.

Once again I turned to Amazon. I purchased an oximeter, the iOX, that would plug into my iPhone microphone jack. During the night as I charged my iPhone, I would also be recording the oximetry data. Cost? About $45. The next morning I emailed the data to myself, opened the data file in Excel and reviewed it.

I enjoyed being able to have access to the data for myself rather than just waiting for a phone call from the clinic to tell me if my machine was working okay. I learned that my heart rate slowly dropped as I fell into a deeper sleep, starting with my normal resting rate of 60 beats per minute and then eventually reaching the low 50’s to high 40’s. My respiration rate showed a similar pattern, starting at around 15 and then stabilizing at about 12. My pulse oxygen remained consistently around 97 to 99% and only briefly dropped into the mid 90s for a total of about 30 seconds.These are all good numbers and give me confidence that I can continue to rely on my ventilator.

Chart copyNow here is the seismology part. There was a 5.2 earthquake at 1:04:39 that morning with its epicenter near Borrego Springs, about 50 miles from here. The shaking in my location began about 20 seconds later (seismic waves travel through the Earth’s surface at about 2.5 mi./s). You can see my response on the oximetry data. It woke me slightly after 1:05 AM, although I did not stay awake. In fact by morning I had forgotten about it until I saw it mentioned on the news and then remembered being awakened. My heart rate briefly rose to my normal waking rate of 60 and my respiration rose from 12 to 18, but within less than a minute both returned to sleeping levels.

I have included a link to the oximeter I’ve used in case anyone is curious. A word of caution: I do not have any heart or lung conditions that I know of and so I feel confident with relying on the data I obtained. Others might want to consult their medical professional.

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Feb 252016
 
On the left, the way we were in 1996. On the right, with some of my grandchildren and great grandchildren, late last year.

On the left, the way we were in 1996. On the right, with some of my grandchildren and great grandchildren, late last year.

Normally, my “Chronicles of Disability” consists of annual reports on the changes in my health over the previous 12 months. I forgot to post a report for the year 2014, but perhaps it’s just as well because there were very few changes – – just more weakness in general. So now we come to this major milestone. It has been 20 years since I was diagnosed with inclusion body myositis (IBM). This rare muscle wasting disease is described as “slowly progressing”. That may be true one month to the next or even one year to the next. But when the person I was in 1996 is compared to who I am today, the contrast is jaw-dropping.

Twenty years ago I didn’t think there was much wrong with me. Yes I was slowing down in my running, and my golf shots seemed to be getting shorter, and I did fall once in a while, so what? I was 55 years old, just normal aging? I could still hike mountain trails, jog (slowly), show up for work every morning, work around the house, go to parties with my wife, take long driving vacations. Life was very good.

Now, I very nearly meet the criteria of a quadriplegic. I can’t move either of my legs or my left arm. I can only raise my right arm a few inches above my waist. I cannot stand, walk, or transfer without the aid of an overhead lift system and a caregiver. This will probably be the last year that I am able to continue feeding myself, unless the new drug (BYM338) gets released and actually works. My fingers don’t bend and my speech is getting quite weak. This is making my writing avocation more challenging and I may need to give it up within a year or so. Unrelated to my disease, but definitely affecting my life, my wife died of her own rare muscle illness in 2012.

My current home features the ultimate "open floor plan". My wheelchair loves it.

My current home features the ultimate “open floor plan”. My wheelchair loves it.

At the time of my initial diagnosis, we were living in a two-story four-bedroom home overlooking the mountains of southern California and a little slice of the Pacific Ocean. Today I am living in 250 square feet in an assisted living facility. The room is comfortable, the view isn’t bad (mostly of an ancient olive grove), the caregivers are friendly and helpful, and the food is very good. My days are spent doing what writing I can, either for Huntington Manor or for my Life Disabled blog, but that work is getting more difficult every day. So instead I am catching up on a lot of movies and television and doing a little reading. I also like to take my wheelchair out on long jaunts through the countryside and down to the local business district of Poway. Huntington Manor is launching a major renovation of the facility and I have been promised one of the beautiful new rooms that will overlook the garden and the hills beyond. That is enough to keep me motivated to stick around until the project is finished in 2017.

When I first started this blog, and when I wrote “Rolling Back: Through a Life Disabled” I suggested that the newly diagnosed read about my experiences to be properly prepared for what lies ahead. Now with a new treatment on the horizon, it is quite likely they may never have to experience this severe of a decline.

I have reposted many of the pictures and captions from the past 20 years. I think they tell an interesting story about the effects IBM has had on one person’s life. As you’ll see, I have remained generally happy and hopeful throughout that time, but I must admit that my general mood has been declining. Recently, I saw a neurologist who lowered my expectations for the new drug by pointing out that it would not be of any use for the muscles that were already dead and that, in my case, most of the muscles are completely destroyed. The most I can hope for is maintaining the minimal capabilities I have now.

By the way, one of the special pleasures I get these days is when someone purchases my book. It’s available on Amazon — just click on the link on this page — seven dollars for paperback and three dollars for the Kindle edition, or free if you are using Kindle Unlimited.

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 072014
 
Here is the cover for the paperback version of my book.

As most of you know (I hope) I have published the Kindle edition of Rolling Back: Through a Life Disabled. (You can see the Amazon listing by clicking on the link at the bottom of this post.) I had assumed that most people were now reading books electronically. However I quickly learned that many of you prefer to read books that you can hold in your hands, turn the pages, etc.
I remember those days. Unfortunately I’m no longer able to do that. But the good news is that there now are so many options available for reading on a screen. I am too weak to even hold a Kindle so I use the Kindle Reader on my computer. I have also recently signed up for a wonderful service through the local library called BookShare. It is for people like me who are not capable of holding a book. It is also for the blind. Once you have established your disability and have been accepted into the program, you can scroll through all of the books that a regular library might hold and select ones you want to read. They’re delivered instantly to your computer where you can either read them on the screen, or listen to them. I am very grateful that this program exists.

This is how I read (the 27 inch iMac) and how I write (microphone for voice recognition).

This is how I read (the 27 inch iMac) and how I write (microphone for voice recognition).

The paperback version of my book should be published in about three weeks. It has been a much more complicated process than publishing for Amazon Kindle. Both versions recommend that you work with Microsoft Word, but the publishing process for a paperback needs everything formatted to the exact size of the finished book.
Once the paperback is available you will notice its price is more than double that of the Kindle version. ($6.99 for the paperback versus $2.99 for Kindle.) This simply reflects the printing costs involved in producing a 134 page book with a full-color cover. If you’re curious, my royalty is greater for the Kindle version. I have received some kind reviews about my book. Thank you!

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 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.

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.

Oct 092012
 

Beth at Sunshine Week One

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).

May 292012
 

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

Beth having lunch during our first week at Huntington Manor

Beth having lunch on the deck outside our room during our first week at Huntington Manor

As my weakness from Inclusion Body Myositis became more debilitating and Beth’s vision and cognitive issues worsened, we faced the big question – should we move to assisted living?

There were several aspects to this decision. Perhaps the most easy to evaluate was the financial. Perhaps the most difficult was the emotional.
And then there were family issues, especially children who were tired of worrying about us.

Being the analytical type, I prepared numerous spreadsheets trying to decide whether the move to an assisted living facility made financial sense. I discovered that, to obtain adequate care within our home, we would need to spend about as much as it would cost to get assisted living outside the home. However, there were so many other emotional issues involved that no amount of tweaking the numbers on the spreadsheet seemed to fully resolve the issue in either of our minds.

View from our home in Rancho Bernardo

We had promised ourselves to spend the rest of our years in our Rancho Bernardo home.

We had spent a lot of money on, and had a significant emotional attachment to, the changes we made to our existing home. It was single-story, easy to get around for us in wheelchairs, and had a very nice view out the living room window. We each had our individual art studios on either side of the spacious family room. We would have to say goodbye to all of that. In addition we would be downsizing dramatically from about 1600 ft.² to a little over 500 ft.²

Then there was the concern about our independence. Would we feel as though we were unable to live our own lives if we moved into a facility that had its own schedule and structure?

Eventually, the more I worked on the financial side of it, the more I realized that moving to some form of facility was going to become inevitable. If we remained where we were and continued to spend considerably more money than we had coming in, we would eventually reach the point where we had exhausted our savings and then what? We could sell the home, but then we would hardly have enough resources to maintain us in any other location for more than a few years. On the other hand if we moved and spent down our savings, we could retain our home and rent it, which would provide additional income during that time. Then, when the savings was depleted, we could sell the home and continue to live in the assisted living facility for several more years.

So, ultimately, the practical considerations and family concerns outweighed the emotional worries. How is it working out? Better than we expected. In the next article we will get into the details of how we chose Huntington Manor to be our home – conceivably for the rest of our lives.

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?