Dec 232014
 

This photo shows why I haven’t been able to take photos lately.

Inclusion body myositis has left my hands weak and disfigured.

Inclusion body myositis has left my hands weak and disfigured.

Recently I have not had much to say. No, let me correct that. I have not been saying much. I do have a lot to talk about, however I am trying to make some more adaptations to keep up with the progress inclusion body myositis is making on my body. The effects are especially noticeable on my hands and fingers, shoulders, and the ability to speak, sing and swallow. I recently got approval to go on home health and have started receiving regular visits from a speech therapist, occupational therapist and physical therapist.

Not only are my hands and fingers week, they are nearly frozen in one position. this has caused me to temporarily give up photography altogether. Some of you may recall that in the beginning I was using either my iPhone camera or my GoPro camera which was controlled by my iPhone using the GoPro app. I can no longer hold the iPhone in my hand and use my other hand to touch the screen, so that rules out both of those methods of taking pictures. My occupational therapist is working with me to try to find a system that will solve this. When he does (and I am sure he will; he is very clever and persistent) I will do an article about the method used.

My occupational therapist is also working with me to expand upon a scheme I devised to restore some movement in my fingers. I played the piano from the age of three. It was one of my great pleasures and a favorite method of relaxation. IBM took that away from me several years ago. There is a piano in the common area at my assisted-living facility and occasionally I peck away with the one finger of my right hand that is still strong enough to press a key. So I decided to purchase an electronic keyboard, a Yamaha PSR E443, that would always be waiting for me in the “office” of my assisted-living apartment. My theory was that I would be so motivated to produce music that I would play it often and perhaps expand my ability to move the fingers on my right hand. Even more ambitious, I was hoping to be able to use at least one finger on my left hand to take advantage of the auto accompaniment function of the keyboard. However, the extreme weakness of my left shoulder prevents me from using my left hand unless I lean to the right and lock my shoulder in place. Doing that leaves me unable to use my right hand. After working with my keyboard about one month, my right hand acquired enough dexterity that I can play two notes at once using the index and middle finger and then add a third note with my thumb. This is a major increase in hand function and it is also paying off with things as simple as picking up an object from my desk. I am also now able to use two fingers on my left hand, although I have not been able to overcome the problem of lifting that hand and using it in conjunction with my right hand. My occupational therapist believes this is a therapy worth pursuing and he is now working on a system that might allow me to make more use of my left hand by supporting my left arm and leaving my hand free to move. If this works out, it will also be the subject of a blog post.

My physical therapist is trying to loosen up my neck muscles which are so tight that I can no longer turn my head enough to see behind me. This is a big problem when you need to back up a 350 pound wheelchair. My speech therapist is working with me on strengthening the muscles used for swallowing and is teaching me ways to avoid further damage to my weakened vocal cords.

Early next year, I will let you know how everything is going. Meanwhile I wish you all a good holiday season and an even better New Year.

Oct 192014
 

Some more advantages to using an overhead lift together with a hygiene sling.

This simple device could save huge amounts of time and discomfort for people who are non-ambulatory and those who must care for them.

This simple device could save huge amounts of time and discomfort for people who are non-ambulatory and those who must care for them.

In addition to lifting someone safely and easily, an overhead lift offers some additional benefits. You might compare it to taking your car in for an oil change. Just like they put your car up on the rack to have easy access, the caregiver also has easy access to otherwise hard-to-reach areas of the person being cared for. Besides post-toileting hygiene, this helps with skin checks, skin care and changing underwear.

Changing underwear? Here’s how: while the patient is being suspended by the lift, pull the underwear around the bottom and toward the knees as far as possible. Lower the patient back down to a seat. Unhook the leg straps from the overhead lift and then bring them back up, passing them between the underwear and the seat. Lift the patient again and let the shorts fall off. Put a clean pair over the feet and legs and lower the patient once again. Unhook the leg straps from the lift. Pull the shorts as far up as they will go. Put the leg straps on the lift again, being sure they are on the outside of the shorts. One last time, lift the patient and pulled the shorts the rest of the way on. Lower the patient back to the seat and the shorts have been changed. (The process takes a lot longer to describe that it actually takes to accomplish.)

I designed and sewed pants that I could put on by laying them on the chair and  fastening them around me.

I designed and sewed pants that I could put on by laying them on the chair and fastening them around me.

What about the outer wear? Some people use open-bottom garments that are specially made for wheelchairs. Personally I prefer the type of pant that I designed which simply lays flat on the wheelchair seat and I am lowered onto it. Then it Velcros in three places – along the legs and down the front to form a complete pair of shorts that look exactly like a regular garment.

If you are not yet convinced, maybe a demonstration will help. In the interest of public decency I decided not to be the model for this brief video.


Jeff Conner, President and owner of Pacific Mobility.

Jeff Conner, President and owner of Pacific Mobility.

Special thanks to Jeff Connor, President and owner of Pacific Mobility, who recently presented me with a new overhead lift mechanism, courtesy of Prism Medical. He also brought along his panda to help demonstrate the advantages of an overhead lift and a hygiene sling.

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.