I am 72 years old, nonambulatory due to a rare disease (inclusion body myositis), and am living in an assisted living facility. It took me a lot of searching before I could even find one that would accept me. Most said that they would not take care of someone who wasn’t able to stand or walk. My “neighbors” are almost exclusively people 20 years older than me and most are incapable of carrying on a conversation. (no fault of their own, disease and age have damaged important cognitive functions.) The caregivers here are very conscientious, but like most, they are overworked. I am fortunate that I can be my own advocate and thus I get very good treatment.
Every so often, I will check the surrounding area of Southern California to see if something new has arrived that might provide a more stimulating environment. At the end of each search I always return to my room and feel grateful for what I have, because it is fully wheelchair accessible including an enormous roll in shower. Most of the facilities have tiny tub-showers with fiberglass enclosures and little built-in seats that could not possibly accommodate me. As for their “activities” the larger facilities seem to focus on the needs of the least common denominator and provide “sing-alongs” featuring songs from the 40s, bingo, and various childish games. For this, they charge anywhere from $5000 – $7000 per month. By comparison, I like to spend my time studying computer programming via the Stanford University lectures on iTunes. (Or writing this blog.) I know that I am not the only person who is older or disabled but also has a continued desire to learn.
It is obvious that we need a new paradigm for the care of an aging population. As we live longer, more and more of us will develop chronic illnesses that reduce our mobility or our cognitive facilities. In my own case, the ideal solution would be to live in my own home with visiting care givers to get me out of bed and shower and into my wheelchair in the morning and then get me back into bed at night. For most of the day I can be independent except for meals, which I could obtain at a local restaurant or my local microwave. The problem comes from not knowing exactly when I might need help. If I were in bed at night and an emergency arose, what would I do? If, during the day, I dropped something important and couldn’t pick it up, how would I get help? Right now, I can press the pendant that is always around my neck and someone will be around to help me. At home alone there is no such system. The cost of round the clock in-home care is prohibitive and would be a terrible waste of human resources anyway.
My concern is that the movement of for-profit corporations into this field means that any rational and humane solutions will be forever blocked.
Need we say more?
For the past few years, putting on pants has been an hour-long process. Because I can’t stand, I would start the pants over my legs, then return to bed to finish getting them up. By the time I was through pulling, trying to roll, and cursing, I was almost too exhausted to get back out of bed.
Then a few months ago, I lost the ability to slide into bed and started using a ceiling lift. Don’t know why it took me so long to think of this before, but I simply ripped out the seams of a pair of jeans shorts at strategic locations. I removed the stitches along the inside of both legs and then up from the crotch to the beginning of the zipper. Then I removed the zipper itself and replaced it with Velcro. I also added a bit of fabric to the inside of the legs and put Velcro there. I added a fleece panel for comfort and privacy.Now I no longer have to return to bed to dress. I simply lower myself (overhead lift) to the wheelchair where I have the pants laid out flat and then close them up. Takes a couple of minutes instead of an extra hour. I also no longer have to struggle with pulling my pants out from under me when going to bed or using the toilet.
Important update: when I lived at home, these lifts were attached to the ceiling. Now that I am in assisted living that is no longer a desirable solution. There are new types of systems that require only unobtrusive pieces attached to walls on opposite sides of the room–they don’t even need to be attached to studs as all of the weight is absorbed at the base.
If you are disabled, you often can appear almost “normal” when you are out and about during the day. After all, you’re dressed, you don’t stink (hopefully), and you move from place to place quite briskly with the aid of your $30,000 wheelchair. However, most people never get to see you when you are at your most disabled: when you are dressing and undressing, getting into or out of bed, or when you aren’t using the bathroom. Today, I will explain the extraordinary measures I have taken to make my bathroom a happy place.
We bought our present home about five years ago, shortly after my wife had been diagnosed with myotonic dystrophy. We realized that she would no longer be able to climb stairs, and since I hadn’t been able to do that for many years, what was the point of remaining in a two-story condo? Housing prices were still very high back then, so we were somewhat limited in our options.We settled on Seven Oaks, a senior citizen development in the Rancho Bernardo area of San Diego. Our home had been built in 1964, and the bathroom had been left undisturbed – a monument to the shortsighted thinking of home builders of the time.
My first task was to redesign the bathroom in a manner that would allow me to get into it in a wheelchair and actually accomplish some of the functions one typically performs there. That redesign turned out to be simpler than I had imagined, once I realized that all I needed was the ability to close the door behind me and to transfer sideways onto a toilet or shower seat. In addition, I needed to be able to get close enough to the sink to be able to run the faucet and expectorate toothpaste. You can see my solution in the floor plans accompanying this article.
When we moved here, I was still able to stand, provided I held on to something with all of my might. Since my illness is progressive, I realized that wasn’t going to last very long – actually it only lasted about five months after we moved into the house. So I designed the toilet and shower seat to be high enough that I could slide from them back into my wheelchair when it was at its lowest level. My wheelchair has an elevating seat, so I could get into either of the other locations by raising the wheelchair high enough to slide downhill.The sink was an easy matter to take care of. I simply had the entire counter and cabinets removed and then replaced the sink with a suspended model from Kohler.
Those who know me well know that I am always thinking ahead. So I realized that even sliding downhill would eventually become too hard for me to accomplish. As a matter of fact, I am reaching that point right now. So I had an overhead lift system installed in the ceiling of the bathroom. Now I could use the electric lift to pick me up and then glide effortlessly across the room, right? Not so fast. There was the inconvenient matter of the shower curtain rod. It had to go. So I have been spending the last several days building a new kind of water barrier that could be moved out of the way of the lift and then replaced once I was seated in the shower.
Several days? Yes, because my arms have become so weak that I can no longer hold an electric drill with any substantial security. In fact, I can’t even pick up what most of you would think of as an electric drill. I use one of the ultracompact lithium ion models which are not powerful enough to penetrate the 56-year-old wood surrounding my shower stall. But eventually I managed to get the various components in place.
The toilet. I have saved this for last, because I know most people don’t like to talk about this particular piece of equipment. However, for the disabled, it is almost always on our minds. When will we need one? If we find one, can we get on it? More importantly, can we get off? Reasons why I rarely travel more than a half hour from my home. You see, my toilet is my friend. I had a Toilevator installed beneath the toilet, which raised it 4 inches – enough to make transfers convenient. I also added a BioBidet 1000 seat.This wonderful device almost eliminates the need for conventional hygiene (which with fingers that don’t bend or grasp is almost impossible anyway) and it makes me look forward to the beginning of each day.
I hope none of you have been reading this over dinner.
1985-1995 (pre-diagnosis) stumbling while jogging, golf club flying out of hands, difficulty rising with backpack, jogging speed declining
1996 – diagnosed at UCSD Medical Center
1997 – started using walking sticks to help avoid falls
1998 – purchased scooter with elevating seat for distances more than 100 yards
purchased van with lift in rear for taking scooter along
1999 – fitted for full leg braces (KAFO) and forearm crutches
purchased Jazzy wheelchair with elevating seat
had condo modified with ramps at curb, entrances, sunken living room
replaced roman tub with roll-in shower, added roll-up counter in kitchen
bought fiberglass portable rampp
2000 – purchased raised toilet seat
purchased hand controls for van
retired on disability
gave up piano, golf, tennis, took up watercolor
2001 – became coordinator for paint out group of San Diego Watercolor Society
2002 – became Membership Director of San Diego Watercolor Society
2004 – became International Exhibition Director of San Diego Watercolor Society
purchased van with ramp and transfer seat
2005 – purchased Pride lift chair
became Technology Director of San Diego Watercolor Society
began making hooks and dressing sticks
purchased grabbers (six)
Beth erroneously diagnosed with ALS by local Centre for Healthcare neurologist
(two months later) Beth correctly diagnosed with myotonic muscular dystrophy by MDA neurologist
acquired Permobil C500 (Medicare) for Mike
purchased Jazzy 1103 wheelchair for Beth
2006 – purchased Biobidet
became President San Diego Watercolor Society
purchased single story home in Rancho Bernardo (San Dego)
added 200 feet of outside sidewalks for wheelchair access to yard
added ADA bathroom (elevated toilet with bidet, low-lip shower, roll-under sink, room for wheelchair)
acquired hospital bed (Medicare)
2007 – began using shelf liners to lift legs
began purchasing wheelchair pants from USA Jeans
2008 – purchased ceiling lifts for bedroom and bathroom
2009 – purchased rechargeable wine opener
2010 – purchased iPad for drawing, games, voice recognition, etc.
purchased automatic can opener, jar opener
purchased computerized sewing machine (no foot pedal)
made belly bag, art apron, cooking apron, robe, work table, sliding pad
2011 – Lost ability to make horizontal transfers and began using overhead Waverly Glen lift.
Sewed pants that velcroed around me after being lowered onto them.
Hired part time caregiver for showers ( no longer safe to do on my own).
Lost ability to drive, began relying on the bus.
Hired second caregiver and greatly expanded their hours to daily as Beth also needed help.
2012 – Beth began hallucinating.
Moved both of us to assisted living and put home up for rent.
Beth died of respiratory failure due to myotonic muscular dystrophy.
Lost most strength in arms, began using mobile arm support.
Teddy Roosevelt had it right. He said “speak softly and carry a big stick”. Well, I speak softly (due to weak muscles caused by IBM) and I carry several big sticks to compensate for my weak hands and fingers.
In an earlier post I showed a simple hook for opening drawers and lifting soft drink cartons. My next most used tool is a ” hook on a stick”. It also takes advantage of muscles I still have to overcome the loss of others.
Here are some of the ways I used it yesterday:
Guide my shorts over my feet and up to my knees.
Pick up the towel I dropped outside the shower.
Push dirty clothes into the washer.
Pull clean clothes out of the washer and put them in the dryer.
Pull dry clothes out of the dryer.
Pull open the bottom drawer of my dresser. (Lift out a pair of underwear and a pair of shorts.)
Open the crisper drawer of the refrigerator.
Pull out a pan from the cupboard.
Push open the lid of the trash can.
Pull the trash receptacle out from the wall.
Pick up a 12 pack of Cokes.
Rearrange items on the shelves of my studio.
Pull the front door closed.
Release the parking brake on my van.
Engage the parking brake on my van.Obviously a tool this valuable can’t be limited to just one. I have nearly a dozen of them throughout the house and in my van. Fortunately they are quick and inexpensive to build:
Materials: A dowel (3/4 to 1 inch), and two hooks.
Cut the dowel to the desired length.
Drill a hole at each end.
Screw in the hooks. Even in my weakened condition, it takes less than half an hour, and saves a lifetime of aggravation.
When your legs are weak or paralyzed and you try to stand or walk, gravity is your enemy. But when you are using a wheelchair or scooter, gravity can become your friend. One of the ways I have maintained my independence despite being unable to stand or walk is by using gravity. I have a wheelchair with an elevating seat. In addition, I have a hospital bed that elevates (the Invacare “full electric” model).
Warning! Rant ahead: Despite the fact that an elevating seat can make it possible for an otherwise immobilized person to independently transfer into and out of bed, on and off the toilet, and on and off a shower seat, Medicare continues to say that an elevating seat or elevating hospital bed is a “convenience” item and they will not pay for it. Fortunately, many manufacturers recognize the need for elevating seats and include them as standard equipment. You will need to find a mobility supplier who knows how to work with you to get what you need.Once you have an elevating seat, you need to make sure that each place that you want to transfer to is of a height that is about half way between the lowest and highest positions of your scooter or wheelchair seat. For example, if you have a wheelchair that is 20 inches high at its lowest seat position and 26 inches high at its highest position, you would be wanting a bed, toilet seat, and shower seat that are about 23 inches high. This would allow you to slide from your elevated chair to the bed and then slide from the bed onto the lowered chair when you are ready. (See the diagrams I provided with this article.)
The other item of equipment you will need is a transfer board. I strongly recommend the “UltraSlick” board. You can buy the 30 inch version over Amazon, or your own mobility supplier may have it in different sizes if that is not convenient. Important: if you are trying to slide on the board when you are not dressed, be sure to wedge a towel part way under so that you can have it between you and the board. Bare skin, especially wet bare skin, on an UltraSlick board will probably stick like glue and you may need help getting free.
Welcome to Life! (disabled). And note the emphasis. Despite having a difficult disabling illness, I still find a lot of pleasure in living. Much of that pleasure stems from finding – and sharing – new ways to cope as my illness progresses. In this blog I will share some of the things Inclusion Body Myositis has taught me. I am not a medical professional, so please regard this information as personal observations and not medical opinion.