Jun 282016
 

I was diagnosed with inclusion body myositis 20 years ago. Throughout this blog I have recorded the various stages of weakness and disability that I have experienced. I have always wondered how the story would end. Now I know. I hope this will help others suffering from my condition.

The past few months I have noticed the effects of my weakness to a much greater extent. Especially with respect to being able to hold myself upright when sitting, the ability to breathe, and most importantly, the ability to swallow. People have suggested a feeding tube however that would have meant moving to a different type of facility and a much lower quality of life. Therefore I decided that would be something I would never do.

Two weeks ago I woke up with pain in my left side that greatly restricted my ability to take a deep breath. I also seemed more congested than usual and attributed it to a cold. However after a week the cold had not gone away and I was spiking high temperatures at night. Eventually I decided I had to go to the urgent care.

At urgent care they took a chest x-ray and said I had aspiration pneumonia in three places in my lungs: upper right, upper left and lower left. I was immediately transported to the hospital where they began giving me their strongest antibiotics IV.

Their speech therapists evaluated my ability to swallow which was made much worse by the hospital bed that did not give me the lateral support I need in order to sit upright and swallow. So she said they would not be able to give me food or water. After two days the doctor came in and said I was not getting better and that I would never get better because they could not get nutrition into me. He suggested a feeding tube but added that even that might not be any difference. Of course I refused the feeding tube. He then told me my best option was to return to my assisted-living facility under hospice care. They would continue the antibiotics and I would be able to eat and have a chance to fight off the pneumonia. However he cautioned that under even the best of circumstances there was a good chance that this would be the end of my life. He was a very good doctor and went on to say that I had been fighting this inclusion body myositis for many years and that now it just might be time for me to stop.

I am back at Huntington Manor now and despite the antibiotics and being able to eat (although not wanting to) I am back to running high fevers at night which is a sure sign the pneumonia is continuing to worsen.

I am on hospice and they will keep me comfortable as I complete this journey. I have made many online friends over these years and I value those friendships deeply. I simply couldn’t leave without saying goodbye.

Apr 142016
 
Back where I belong.

Huntington Manor assisted living in Poway, California.

I recently returned to Huntington Manor assisted living after spending 15 months at a much larger, more expensive facility which I will refer to as “The Other Place.” People have wondered why I came back to Huntington Manor and, if I like it better here, why did I move in the first place? These are good questions and my answers may interest you.

Huntington Manor is a 27-bed assisted living facility located on the outskirts of Poway, California. My wife and I moved here in the spring of 2012 because it was the only place we could find that would accept my overhead lift system and was priced low enough that we could afford two rooms. My wife died a few months later but I remained here for another two years. I liked the location, had become friends with the owner, had gotten to know the staff well and enjoyed working on their website and blog.

Is this all there is?

My family felt that I was not taking advantage of some of the extra amenities that were available in larger facilities. So every once in a while I would check out a few of them, however I always got the same answer, “Sorry, but we can’t take care of someone as disabled as you and we definitely don’t want your overhead lifts in our facility.”

One day I was told about a place near the coast that might accept my physical requirements and my lifts so I checked them out. Like the other large facilities, they promised an extensive activities program, restaurant–style dining, frequent excursions, and several common areas where residents could mingle. When I asked about my overhead lifts, they said they would have to check it out with “corporate.” At the time I didn’t know exactly what that meant but I certainly do now. After several weeks they told me I was approved. But could I afford to live there?

Large assisted living facility

Could I afford to live this large?

Sticker shock.

Do you ever see those reports about assisted living that show the average cost by state and think “that’s not so bad.” It wouldn’t be if those were the actual costs, but sadly they are not. When the larger facilities publish costs or give them out over the telephone they are quoting the base rate for a room and the most standard care level available. (Smaller facilities are less likely to use this tactic.) There are very few people entering assisted living who could live with that amount of care. If you have difficulty transferring or walking or keeping track of appointments and medicines or dressing or feeding yourself, you will pay a lot more. The way it works is the facility will do an “assessment” and assign points for each type of care you need. Would you like help taking a shower? Do you have difficulty cutting meat? Do you have other bathroom issues? Based on the number of points, they will assess you an additional daily rate. In my case, the basic charge for the room was $140 per day, but the added charge for providing me assistance was $80 per day. That meant I would be paying $6600 per month for those months with 30 days — much more than I was paying at Huntington Manor. Nevertheless, they were advertising so many extra services that I felt I should try it out.

Corporate greed trumps senior need.

If I had known what was going on behind the scenes, I would have made a different decision. I had been given the standard story –a married couple started this chain of facilities out of a desire to create lodging for seniors that felt more like homes and less like hospitals. This was true, and from the stories I heard from people who had worked there for many years, life used to be very good for both the staff and the residents. But then came the economic downturns and the big corporations smelled blood in the water. Today The Other Place is owned by a real estate investment trust (REIT) that packaged several hundred senior living facilities together and offers shares to investors. They have no interest in the business or the residents — but they certainly worry about their shareholders. They contract with large property management corporations to run each of the facilities as profitably as possible. How do you get more profits? You cut costs and raise rates.

I experienced the cost-cutting first. This showed up in the number and quality of the activities offered, the quality of the food, and the number of caregivers available.

Activities – not my idea of good times.

The main reason my family wanted me to move to a large facility was for the activities. Even before the cost-cutting, I discovered that most of the activities were designed around the needs of people who were much older and especially for those who were suffering from early stages of memory loss. I’m sure my children picture me have a lively conversations, going to movies, developing close friendships, etc. Sadly, that did not turn out to be the case. Most of the activities focused on either playing bingo, or playing simple word games. There were crafts every couple of weeks but they were usually at the level of early elementary school. I understand that I was not the target audience for their program. Assisted living activities programs are mostly for people who are over the age of 80, female and with some form of cognitive difficulties.

The one program I truly enjoyed was the music. They brought in professional musicians who performed and encouraged residents to join in singing. Of course that cost money and it was one of the the first programs to be affected by budget cuts. The number of acts was cut in half and some performers just quit coming because the pay was too low. There were monthly excursions and weekly trips to local restaurants but I preferred my wheelchair and public transit for the independence it gave me. Besides, many of the residents needed to be watched carefully, so any trips away from the facility required at least one caregiver for every two residents to make sure no one wandered off. This limited the number of participants to about ten residents.

Dining

I had heard stories about the elegant dinners they used to serve, and you still see pictures of food from those events posted on their website. I never saw any personally however because by the time I arrived all menus were being planned from the central headquarters back east and the local chef was given almost no authority to change the menu or improve the quality of food being offered. In fact, the menus were printed a month in advance and shipped to the facility to be displayed for each meal. After a few weeks, everything seemed to taste the same. That was because many of the foods were based on the same packaged ingredients. For example soups were made from one of four stock bases. Very few items were cut from scratch in the kitchen.

No turkey loafing at Huntington Manor.

No turkey loafing at Huntington Manor.

At Huntington Manor, the first step in making chicken soup is to boil some chicken. At The Other Place, most turkey or ham dinners come from deli loafs of turkey or ham. Here, they come from turkeys and hams.

Cuts in caregiving.

Perhaps the saddest result of corporate greed is what happened to the caregivers and their relationships with residents. When I arrived there were seven or eight caregivers on duty during the daytime hours. They were charged with caring for approximately 70 residents. By the time I left, many days there were only five caregivers for the same number of residents. If you are doing the math you’ll see this works out to one caregiver for every 14 residents. Subtract from that the several hours per day they must spend on other tasks such as working in the dining room and there is obviously little time to get to know a resident well. By contrast, at Huntington Manor we have five caregivers on duty during the daytime for 27 residents – – an average of about one caregiver for every five residents. At night, the contrast is even more dramatic. The Other Place has two caregivers on duty at night for all 70 residents. Huntington Manor has three on duty for 27 residents.

At both facilities, the people who actually provide the care are competent and hard-working. Many of them truly enjoy what they do and like to help people. Because the pay levels are so low they typically work two or more jobs to support their families. They deserve our respect. Unfortunately many of the residents have personality disorders that go along with dementia, making them difficult to care for. In my four years of living in facilities, I have never experienced any kind of abuse but I have certainly seen caregivers on the receiving end of it.

Where does the payroll go?

Something else that comes along with bloated corporate ownership is bloated staff. It’s wasteful but may be necessary to keep up with the record-keeping and regulatory demands of a big corporation. Where I am now we have four staff who are seldom involved in direct patient care: the owner, the administrator, the cleaning person and the gardener. At The Other Place most of the common areas are filled with offices. There is the executive director plus people in charge of the business office, sales, assisted living, intermediate memory care, health services, activities, food service, maintenance, and reception. Many of these have their own staff. Every two months or so a carload of impeccably dressed executives descends on the managers and hovers over them making sure every procedure is carried out according to the corporate book. I’m sure the regional managers fly back to headquarters every so often for some of the same treatment. Almost lost from sight are the five or so caregivers themselves.

The big price increase.

When I was negotiating the price for The Other Place, I was given a chart showing price increases during the past several years. They averaged about 2% which made me feel comfortable that I could manage them. After a year I got my first actual price increase. It was just under 10%! Doing some investigating, I learned that a dollar increase of about the same amount was likely for the following year. There was no way I could afford to live here unless I changed to one of the smallest rooms. To do that I would need to reinstall my overhead lifts – an expense of about $2000 and adjust to a cramped lifestyle and wait for the next round of cost cutting and price increases. It so happened that I heard from Huntington Manor the next day asking if I would like to return. I really didn’t have to think twice. So now I am back here and far happier. I miss my favorite caregiver at The Other Place but I am back with good friends that I had here before. If only I had known all of this beforehand, it would have saved me tens of thousands of dollars.

Conclusion:

Despite my experience, I am not recommending people avoid larger facilities. For their target audience, they are providing the services those people seek and can afford to pay for. If someone has Alzheimer’s disease, it could be a very good choice. However, for those of us whose challenge is mostly loss of mobility, we may need to be more creative in our selection process. The big chains now control the largest portion of assisted living beds, but there are many intermediate and small privately owned facilities. Here in California, six-bed Residential Care For the Elderly (RCFE) properties are everywhere. They are less strictly regulated and can offer personally tailored types of care sometimes at significantly less cost. I was unable to find one that could meet my needs, but not many people are as mobility-challenged as I am. If you are facing the prospect of needing more care then you can receive at home, don’t be discouraged. During these past four years the good moments have far outweighed the bad and I’m looking forward to more.

Mike Shirk

Nov 192015
 

My new/old home is calling me back.

My new/old home is calling me back.

My former assisted-living facility has been tugging at my emotions for some time. Then my current facility gave me a swift kick in the wallet. So I am moving back to Huntington Manor in Poway, the place that originally welcomed my wife and me with all of our disabilities, where I was living when she died and just a mile from where her ashes are buried. Compared to my current facility, it is one fourth the size, 30 miles further inland, and more country then luxury. But it is also much closer to my eldest daughter and many of my friends, more flexible in the kind and amount of care provided and surrounded by the mountains and trails I have enjoyed for so much of my life. So when I received the letter from Sunrise telling me my rates were being raised by nearly 10%, the message was clear: “Go!”

I can’t have my old room back with its gorgeous view, but they are doing all they can to make me comfortable in a different arrangement. I will be occupying two rooms that were recently constructed as part of an overall improvement project. (You can see them in the background of the photograph.) In a few weeks, once I am settled, I will share some of the insights I have gained into the big business side of assisted living. One little preview – – instead of a family–owned chain of facilities, I have actually been living in a real estate investment trust, VENTAS, comprising many hundreds of properties, each being run by property management firms, with the primary emphasis on returns to investors. Exactly what that means to the residents, and the hard-working caregivers who serve them, will be the subject of my next blog post.

Aug 312015
 

The interest level and expectations surrounding BYM338 are evidenced here.

The interest level and expectations surrounding BYM338 are evidenced here.

All of us with inclusion body myositis are waiting anxiously for some sign of results from the Novartis BYM338 trials. After all, until now there has been no proven treatment available for this relentlessly progressive muscle wasting illness. The critical stage III worldwide trial is wrapping up later this year and so far all we have are anecdotal remarks from participants. Of course they can only guess because the study is blind, with a fourth of the participants getting a placebo and another fourth getting a dose that is very low. The good news is that some people are reporting results that to them seem significant enough they believe they must be getting either the middle or highest dose and it is working.

However there are places we can look to find real data. For example, a study report published in Current Rheumatology Reports and made available through Springer.com contains some actual results from the phase IIa trial on patients. This was a small trial of 14 participants and of them 11 received the drug. It states that the participants who received the drug were given a dose of 30 mg per kilogram of body weight in a single infusion. The results were then measured at two months and again at three months. After two months, the average person receiving the drug gained about 7 percent of thigh muscle volume. Walking distance in six minutes was measured another month later and the average drug recipient gained 15 percent in walking speed. Both results were statistically significant. The dose was three times greater than the maximum dose being used in the current stage IIb/III dose-finding trial, (although it was only a single dose while the trial consists of monthly doses.) According to the Brookings institute, these results were what prompted the FDA to grant Breakthrough Status to BYM338.

The results of an early study of BYM338 are reported here.

The results of an early study of BYM338 are reported here.

Another place we can look to obtain hints about the success of BYM338 is in the other trials that Novartis has been conducting. The ClinicalTrials.gov website lists eight studies that have been completed or are ongoing plus one that was withdrawn. Among the conditions for which the drug is being tested are IBM, sarcopenia, and cachexia related to chronic obstructive pulmonary disease, lung cancer and pancreatic cancer. Sarcopenia is the skeletal muscle wasting that occurs in most people beginning at age 30 and accelerates as we age. It is classified as an illness when the muscle wasting exceeds two standard deviations from the norm. Cachexia is the wasting of muscle plus fat that results from many serious illnesses. Considering the high cost of conducting all these trials, it is clear that Novartis has high hopes for the drug. As do we!

Questions:

1. In the Novartis quarterly report presentation for Q2 of 2015 they continue to state that FDA submission of BYM338 for sporadic inclusion body myositis will be in 2016. My physician was told by Novartis that they were accepting no requests for compassionate use for this drug prior to FDA approval. Might that policy change once the submission to FDA has been made? (Compassionate use, also called extended use, is an FDA program to make drugs available to seriously ill patients when no other medication is available. FDA states that compassionate use is available for drugs that have not been formally approved nor proven effective, so it is a mystery why Novartis has chosen to withhold this particular drug from the program.)

2. As I understand the mode of action of BYM338, it prevents myostatin from signaling muscle cells to stop growing. This allows the cells to resume their normal process of regeneration (myogenesis). Although it doesn’t cure the IBM, it hopefully will allow the body to build new muscle cells as fast or faster than IBM destroys them. Of interest to those of us where the disease process has resulted in near paralysis, how much muscle fiber must be remaining for myogenesis to take place?

3. The trial with mechanically ventilated patients was withdrawn. Does this mean there was some side effect related to mechanical ventilation? Unfortunately, some IBM patients may become too weak to breathe without mechanical assistance.

Jul 182015
 
"Point Pinos" is one of two of my paintings (along with one of my wife's) hanging in the permanent art collection of the Muscular Dystrophy Association.

“Point Pinos” is one of two of my paintings (along with one of my wife’s) hanging in the permanent art collection of the Muscular Dystrophy Association.

Ten years before this blog began, and several years before the term “blogging” came into general use, IBM had taken my life in a new direction. Besides forcing me to give up a career as a writer and advertising agency owner, it had herded me into a new career as a watercolor artist. Within months of closing the doors to my ad agency, I was opening books on painting techniques, design theory and color harmony. I joined an outdoor painting group, then became a member of the San Diego Watercolor Society – one of the largest groups of its kind in the world – and soon became a board member and eventually president.

This was   my booth at the Hotel Intercontinental in 2003 for The Myositis Association national conference.

This was my booth at the Hotel Intercontinental in 2003 for The Myositis Association national conference.

This new avocation gave me such pleasure and added so much meaning to my life that I had to share the news. I talked to members of our local Myositis Association (TMA) support group and they encouraged me to take my message to the national conference that was coming up in Houston. This was in 2003. The organizers of the conference also encouraged me and gave me a booth where I could display several paintings and hand out literature.

 "Monterey Bay" (15 " x 22 ") will be auctioned  at the 2015 national conference of the myositis Association to raise money for research.

“Monterey Bay” (15 ” x 22 “) will be auctioned at the 2015 national conference of the myositis Association to raise money for research.

Twelve years later, I have once again been approached by TMA to participate in their national conference in Orlando. Of course I cannot travel there, but one of my paintings is making the trip, along with this updated version of my literature (below). The painting will be auctioned with the proceeds going to benefit research into myositis. One session of the conference is about finding purpose in life following disability, so I am very pleased to participate in this small way.

 If you click on this image of the front and back cover it will make it large enough to read.

If you click on this image of the front and back cover it will make it large enough to read.

 This is the inside of the brochure where I tell the story of becoming an artist after being diagnosed with inclusion body myositis.

This is the inside of the brochure where I tell the story of becoming an artist after being diagnosed with inclusion body myositis.

They titled this session “Act II” but if I could be there in person I might add that myositis is not necessarily a two act play. It has been nearly 5 years since I was forced to give up painting due to seriously declining strength in my hands and arms. Of course that led to yet another exciting pursuit – – writing a blog and a book taking advantage of voice recognition technology and electronic publishing. (Which reminds me, my book has been published for nearly a year and a half now and sales have slowed down considerably after beginning with quite a flourish. I didn’t publish the book to make money, in fact I have given away nearly as many as I have sold, but I am curious why it seems to have been forgotten. It was written to help people with myositis, especially those newly diagnosed, because this is not a common illness and coping with it is not a common skill. You don’t even have to pay for the book if you don’t want to because Amazon Kindle owners can read it for free. I’ve included the link below.

May 252015
 

As a degenerative physical disease such as myositis progresses, our coping methods also progress. In the beginning there are inexpensive physical aids such as canes and walkers and often the help of a spouse or family member. Then come more expensive pieces of equipment such as wheelchairs, hospital beds, adaptive toilets, lifting mechanisms and modified vans. Next may come home renovations or moves to homes with more appropriate layouts. Next we may hire caregivers from home health agencies. Finally comes the really big decision of whether to enter a facility. Recently I have noticed more discussion about assisted living or skilled nursing facilities among the myositis community. I can only speculate that as awareness grows and diagnoses increase in number more of us have advanced to the point we can no longer live independently.

It is difficult to write a general article about the need for assisted living or the experience of residing in such a facility because there is no federal standard. It has been left to each state to create its own definitions and requirements. In some states such as California, assisted living facilities may approach the level of skilled nursing in the amount of care they are allowed to provide. In other states assisted living can only provide minimal assistance with activities of daily living. For those states with more restrictions, skilled nursing may be the only option. Of course that means more expense and less freedom.

I wrote a series of blog entries on the subject of assisted living and much of the content is still valid especially for those living in a state such as California. I have provided links to each of those blog entries below. I am continuing to do research on the subject and someday I might turn this into a book. For now I will expand on the series of articles I have already written, with special emphasis on the unmet needs of the physically disabled.

Follow these links to read more:

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?

Feb 082015
 
 With surroundings like this I couldn't give up on photography.

With surroundings like this I couldn’t give up on photography.

 Heading out to shoot some stills and videos. See the video below to learn how my system works.

Heading out to shoot some stills and videos.


In my previous post, I explained that losing nearly all the muscles in my hands and arms and taken away my ability to hold the camera and press the shutter. Today I am happy to report that my occupational therapist has created a system that attaches to my wheelchair and restores my ability to do photography. Actually, it turns my wheelchair into a rolling tripod. Couple that with the ability to tilt, elevate, and roll, and my new system gives me more capabilities for taking stills and videos than before. Please watch the video below to see how it all comes together.
Occupational therapist John MancIl and his bag of tricks.

Occupational therapist John MancIl and his bag of tricks.

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?