Daily Living

Managing the basic needs of life.

Oct 012014
 

As you may know, I recently launched a series of blog posts discussing the benefits of overhead lifts and questioning why assisted-living facilities were not using them in this country. To gather data I had a meeting with the owner of Pacific Mobility (installed my lifts) and representatives of Prism Medical (manufactured my lifts). during the course of the meeting, someone mentioned that Sunrise Senior Living had a policy against lifting residents without mechanical assistance.

As soon as I approached the entrance of Sunrise at La Costa, I knew this was a place I wanted to live.

As soon as I approached the entrance of Sunrise at La Costa, I knew this was a place I wanted to live.

After the meeting I looked them up and discovered Sunrise was one of the the original assisted living programs for the United States and has grown to about 300 facilities in the US, Canada and Great Britain. Their founders were from Holland and their story is worth reading. You can find it on the Sunrise website.

Sunrise has facilities in the San Diego area that I had previously ruled out because of the locations. However I decided to give Sunrise at La Costa a call. I learned that they that do have a policy against most manual lifting however they use floor lifts to accomplish it. So of course I told them all about the advantages of overhead lifting and directed them to this site. After watching the video and reading my previous post, they decided to ask regional management for permission to give it a try. Hallelujah! They agreed.

Beautiful views of Batiquitos Lagoon are just a few minutes away by wheelchair.

Beautiful views of Batiquitos Lagoon are just a few minutes away by wheelchair.

I learned that living here would cost me nearly double what I have been paying at Huntington Manor. But since I had made such an issue of finding another facility that would accept me and my lifts I felt I had no choice but to make the move. I’ve been here several weeks now and am truly enjoying this new environment. For one thing, I am only a 30 minute wheelchair ride from the ocean. For longer trips, the local bus stops right in front every half-hour seven days a week. Also, because I am disabled, I get to ride for free on both the bus and the local rail transit.

In an attempt to make my relatively meager funds hold out, I have taken on two freelance clients. Fortunately since my background is in marketing consultation and writing, I can accomplish both mostly online with the aid of voice recognition.

Pacific Mobility owner Jeff Conner presents me with a brand-new overhead lift mechanism courtesy of Prism Medical.

Pacific Mobility owner Jeff Conner presents me with a brand-new overhead lift mechanism courtesy of Prism Medical.

More news to lift my spirits: Last week, Jeff Conner, the owner of Pacific Mobility stopped by with a free lift, courtesy of Prism Medical and installed the lift along with brand-new batteries.

By the way, this does not mark the end of my series on the advantages of overhead lifts. There are still thousands of assisted living and skilled nursing facilities that have not seen the light. Perhaps even more importantly there are countless caregivers trying to transfer and transport their disabled loved ones without the aid that an overhead lift could provide.

Note: if you reached this page from my series of posts on the subject of assisted living, here is how to get back:

Index for 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 292014
 

Ceiling Lift installed in my room at Huntington Manor

The owner of Huntington Manor was willing to have my ceiling lift installed.


So why aren’t more facilities using them?

A few weeks ago, I decided to find out. It seems that the answer may be very complicated, although, like many questions, money and politics may be at the root of the issue. In the following posts I will share what knowledge I have been able to gain through talking with facilities, manufacturers, and installers. For this first post, I simply want to make everyone understand how simple the process of doing a transfer with an overhead lift can be. Those of you who have followed my blog through the years will recall the nightmare experience I had at a local hospital when they tried to transfer me with brute force. I weigh 220 pounds and it would take a lot of brutes to get me out of my chair.

So please watch the video below with that in mind. It is only four minutes long, because that is as long as it takes a single caregiver to smoothly and safely pick me up from my bed and put me in my wheelchair.

However, I know there are many other factors holding facilities back. Besides money, some are concerned whether it would be safe to install a lift within one of their rooms. I will show the many types of installations and explain that there is one for almost any situation. Others think it would be an expense that they might never recover. There are plenty of case histories to put that fear to rest. Then there is the misperception that most facilities don’t use overhead lifts. While this may be true in California and many other states, it is definitely not true in Europe and Canada. What do they know that we don’t? That will be the focus of one of my articles.

Jun 102014
 

Ceiling Lift installed in my room at Huntington Manor

The owner of Huntington Manor was willing to have my ceiling lift installed.

I am about to begin some posts on a subject that has been the source of puzzlement to me for some time.

Overhead lifts are widely used throughout Europe and Canada where studies have shown they dramatically reduce resident and caregiver injuries. They also cut labor costs since transfers that normally require two or more caregivers are now safely accomplished with one. Despite this information, the assisted living industry in the United States appears to be intractably opposed to overhead lifts, or for that matter any kind of patient lifts, within their facilities. Asking around I have found that many of the major chains have forbidden facilities from installing these systems. Instead they require the caregivers to do the lifting and repositioning. Some claim that overhead lifts would increase labor costs and lead to more injuries and lawsuits, despite the evidence that the opposite is true.

I am trying to determine why there is such opposition. I’m also trying to learn if the problem is as widespread as I believe. Today I heard from a facility that is part of one of the largest chins in the country. According to the person I spoke with, the decision came from their risk management people. (Unsure whether it is an in-house department or a separate risk management company.)

I need your help. Please comment on this post or my Facebook entry that I have linked to this post and let me know anything you have observed on the subject. I plan to publish the first article around the beginning of next week.

Topics will include:

An overview of the issue.
The types of modern overhead lifts available and how they work.
The myths and truths about overhead lifts.
Examples of the use of overhead lifts in other countries.
Exposing either the ignorance or the lack of concern for patients and caregivers that hinders their use in assisted living facilities in the United States.

If it turns out to be obstruction by either risk management or insurance companies I will address that subject as well.

I will deeply appreciate any help you can give me.

Apr 182014
 
"Up against the wall and don't move!"

“Up against the wall and don’t move!”

Life with inclusion body myositis presents some difficult choices. My latest circumstances found me spending lots of time at the local hospital wound care center, buying illegal drugs, and facing long periods of solitary confinement in a 3 foot by 7 foot space. Okay, so I’m exaggerating a little, but we have to make this interesting don’t we?

I’ve been in a wheelchair since 1999 and for the past several years I have not been able to get out of it other than to go to bed or visit the toilet. This means that I am sitting in one position for about 15 hours a day. That is never a good idea even for healthy skin, and my skin is far from healthy. Recently a large area of the region where I sit has lost several layers of skin. The wound care doctor said it was excoriated. This is a fancy word for saying that the skin has been scraped off. It doesn’t feel good, and in fact was at one time a favored form of punishment. The doctor also said the only way to prevent my wound from getting much worse, which could result in surgery and a lengthy hospitalization, was to go straight to bed and stay there. Two hours on one side and then two hours on the other.

This Peruvian skin ointment was the focus of a federal lawsuit.

This Peruvian skin ointment was the focus of a federal lawsuit.

The doctor also recommended I use a prescription ointment called Xenaderm. It works very well, much better than any of the other ointments or creams I had tried. But when I got the bill from my pharmacy I discovered it is not covered by insurance and costs $31 per tube. A little investigation revealed that the ointment is a Peruvian concoction not approved by the FDA and in fact was the subject of a major lawsuit in Florida. On the other hand, all three wound care physicians recommended it, it works, so I’m using it.

I have been following the bed rest instructions, up to a point, and I’m happy to report my skin is doing much better. However those who know me will guess that I’m not taking this lying down (sorry, couldn’t resist). I am working with my wheelchair provider, MDA doctor and a physical therapist to try to improve my wheelchair seating so I can resume a reasonably normal lifestyle. Right now I am sitting on a custom Ride cushion that cost several thousand dollars and is no longer comfortable. I think that as I have grown weaker my body shape has changed. My weight is still the same, but more of it seems concentrated in the worst possible place. I will record my progress with a new cushion on this blog in the weeks ahead.

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.

Dec 192013
 

What if you liked to drive fast? And what if you couldn’t drive at all? What if the most exciting part of any trip was when you tried to negotiate your power chair onto the EZ-LOK system on the floor of your van?

Well, that’s basically my situation. But I do have a few advantages. I have a power wheelchair. It doesn’t go really fast, but I usually can catch up to most of the pedestrians on the sidewalk. More importantly, I have a GoPro camera that I can strap to my head or mount on the chair. And I have A brand-new iMac with Logic Pro X for manipulating sound and creating music plus Final Cut Pro X for editing video. Put it altogether, and what might be the result?

You are about to find out, provided you click on the video link below. It only lasts a minute and half, but it might give you a whole new idea of what life in an assisted living community could be like.

I call it Huntington Raceway Lap. You will see why.

Enjoy.

Dec 082013
 
Using my techniques, I am now able to eat a varied diet.

Using my techniques, I am now able to eat a varied diet.

Like most people with inclusion body myositis, I have weak swallowing muscles. This causes me to have trouble forcing food to go down the esophagus and as result it will try to go down my trachea. Over the years I have had several swallowing studies including two at UCSD Medical Center. These merely confirmed what I already knew, however they also allowed me to see, by way of the fluoroscopic studies, exactly what was going on. I was able to see that the food got trapped in pockets near my vocal chords. This explained why, when I would try to speak while eating or shortly afterwards, I would almost always end up choking and having a violent coughing spell.

The doctors had several suggestions, including having my throat expanded, or having Botox injections, or even stopping eating altogether and having a feeding tube inserted in my stomach. I have known people who have pursued each of those routes. The first two generally do not produce lasting results and the feeding tube would require a higher level of care. So I decided to take what I learned and figure out a way to eat successfully. I’ve been observed by a speech therapist while eating and he said that I was using the techniques that he would normally teach to someone to help them overcome swallowing difficulties. With that kind of encouragement, I have decided to publish a video showing me eating accompanied by my own explanation in the hopes that it might help others who are struggling with this problem.

As always, I caution you that I am not a medical professional and that this is not medical advice. I am simply showing you what works for me and I cannot predict whether it will work for you.

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.

Sep 232013
 

As a disease like inclusion body myositis progresses, it does more than produce the physical changes you expect. It also has a way of taking over your life. It seems that every day I spend more time trying to find solutions to living with IBM than I do actually living. It is like I had just taken the most demanding job imaginable and simply have little time for a personal life.

This may be why I am able to tolerate my current living situation. Even though I am in a very comfortable room with a perfectly large bathroom and am surrounded with just about every assistive device you could think of, it still is not what a normal person would consider ideal. The other residents are nice people, at least the ones who are capable of speaking, but for the most part they are either older than I am by many years or have other issues that prevent forming a personal bond.

About two hours of every day is spent taking care of basic physical needs such as getting up, toileting, bathing, eating, etc. The rest of the time I generally spend at my computer working on the website and blog for Huntington Manor, updating my own blog and my wife’s memorial site, visiting friends on Facebook and posting to the various support groups related to my illness. Every so often I need to tilt my wheelchair back to a horizontal position to help avoid pressure sores and circulation problems and during that time, since I am basically staring at the ceiling or the sky (see video below), I generally focus on meditation. I usually spend one or two hours out of each day looking up information about living arrangements, adaptive equipment, etc., or making phone calls about the same issues. Then there are the doctor visits which usually happen one or two times a week. Even though the appointments themselves are not that long, they involve 8 to 10 miles of wheelchair riding for the round-trips, or even longer bus rides. If there is time left over, my latest Netflix treat awaits.

As I write this, I am not sad or bitter, I am simply amazed by the way I have been so completely taken over by IBM. Up until a year ago, my post-retirement time was more likely to be spent dealing with my wife’s myotonic muscular dystrophy, as it was a disease even more complex and, as we now know, more life-threatening than mine. But that seemed like a worthwhile pursuit and as long as there was hope for making her better, what else would I be doing?

Now here is where this analysis gets a little weird. When I look at the lives other people live, I do not feel envy. if I had to describe what I feel I would say it was puzzlement. Dining out, games, camping, trips to the beach, all the things I can no longer do, I don’t really miss. Somehow I feel like what I am doing is actually entertaining.

My biggest regret about the way I live is that I wish it could be more meaningful. I am sure everyone starts having such feelings as we begin to realize that one of these days will be our last. But I have a unique opportunity since I have almost no obligations other than arranging for the assistance I need to keep me healthy. I keep returning to writing in the hopes that someday I will write something that really has meaning. I am sure that makes me one of about half a billion writers who feel the same yearning.

Unfortunately, making the decsion to “write something meaningful” isn’t enough. I am reminded of the scene in Funny Farm where Chevy Chase is sitting at his typewriter, having left his job in the city to pursue a career as a novelist. He types the title, puts in another sheet of paper, types “Chapter One,” shoves the carriage return (something young writers may not know about) and sits staring at the empty page. For days.

One of the nice things about voice recognition is that an empty screen and listening microphone can’t apply the same pressure. Eventually it will hear some background noise and start typing random words, frequently expletives. For that matter I can just start talking gibberish and Dragon Dictate will not even raise an eyebrow as it spits the words onto the screen.

See what I mean?

A two minute sample of garden meditation.