Bathroom

Need we say more?

What Can We Do About Assisted Living?

Assisted Living, Bathroom, Daily Living, Home Modifications, Inclusion Body Myositis 3 Responses »

Mar 202013

Every time I explore other assisted living facilities, my bathroom always draws me back to Huntington Manor.

The following is a comment I posted on another blog site. It is in response to an article written by Martin Bayne on Dr. Bill Thomas’s ChangingAging website. Mr. Bayne finds himself in a situation similar to mine. He has begun writing articles advocating for the plight of those of us who need assisted living and for whom their are no satisfactory options. I share his concern and am hoping that I can find a way to add my voice.

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.

Mike Shirk

Getting Dressed with Help From Above

Bathroom, Bedroom, Beth, Clothing, DIY, Daily Living, Sewing 2 Responses »

Aug 182011

My shorts with seams removed, ready for hemming, velcro, etc.

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.

My shorts, waiting for me to drop in.

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.

Not a fashion statement - more like a declaration of independence.

What Keeps Me Hanging On?

Bathroom, Bedroom, Clothing, Daily Living, Equipment, Home Modifications, Inclusion Body Myositis, Mobility, Muscle Disease 4 Responses »

Jun 082011

Mike in a ceiling lift hovering above his bed.

Now that I am too weak for sliding transfers, the only option is for someone or something to pick me up. I chose the latter – a ceiling lift. I had previously installed two, one in the bedroom and one in the bath, so now it was time to put them to use. This video shows the process I go through each morning and night.

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.

A Visit to the Bathroom

Bathroom, Crafting, DIY, Daily Living, Equipment, Home Modifications, Mobility, Sewing 5 Responses »

Jan 212011

The author photographing his favorite room.

At the risk of challenging the squeamish or offending the proper, I have decided to share my bathroom with the world.

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.

When we bought our home in 2006, it still had the original master bath as shown in this floorplan from a 1964 brochure.

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.

A few modifications turned an ancient bath into one that is modern, and completely accessible.

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.

My shower bench is 23 inches high (like the toilet).

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.

My suspended sink lets me roll right up for easy access.

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.

An overhead lift at the opening to a shower stall.

To accommodate my overhead transfer lift, I had to design my own shower curtain. Here it is in the open position.

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.

Shower curtain stretched across shower stall.

Here is my custom shower curtain ready for use.

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.

My BioBidet 1000 toilet seat gets the day off to a fresh start.

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.

Rainbow north of our Rancho Bernardo home.

The New Year is often a time for reflection and introspection. So in 2010 I took this opportunity to review the highlights (ho ho) of my journey with inclusion body myositis, along with my wife’s struggle with myotonic dystrophy. This is my second annual update. Sadly, my wife’s struggle ended October 11, 2012.

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.

Leveraging Your Assets by Employing Muscles Still Willing to Work

Bathroom, Bedroom, Clothing, Crafting, DIY, Daily Living, Kitchen, Office, Outside 1 Response »

Nov 292010

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.

An all purpose stick made from a dowel and hardware store hooks.

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.

Besides pulling on pants, my stick is great for closing doors.

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:

You can make a valuable stick with just a few dollars in materials.

Materials: A dowel (3/4 to 1 inch), and two hooks.

Cut the dowel to the desired length.

A dowel with a pilot hole slightly smaller than the hook threads.

Drill a pilot hole slightly smaller than the hook threads.

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.

A dowel with a hook screwed into the end.

Tighten the hooks in each end of the dowel.

Making Friends with Gravity: Easier Transfers for Power Wheelchair Users

Bathroom, Bedroom, Daily Living, Equipment No Responses »

Oct 042010

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.

With an elevating seat, gravity does most of the work of getting you into the bed.

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.)

Lowering the chair seat lets you slide out of bed more easily.

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.

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