DIY

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Instructions for Making Wheelchair Apron

Clothing, DIY, Daily Living, Kitchen, Sewing No Responses »

Apr 142013

When my Work Table apron gets dirty, I just remove the masonite panel and throw the cloth portion in the wash.

I have had several requests for the patterns for some of my projects. Unfortunately, by the time I was doing the videos, I had lost too much of my finger dexterity to be able to draw well enough to create a pattern. Instead, I would use voice recognition to dictate instructions to myself. Following are the instructions for making an insulated apron for use in the kitchen.

These instructions can be modified for making a work table, by replacing the insulation and batting with a piece of hard board such as Masonite and leaving one end open.

We are making an apron 24 x 17 with two twelve inch straps with velcro fasteners. (NOTE THAT THERE IS NOTHING AROUND THE NECK!)

For apron:
Cut fabric with four and five eighths inches extra on ends and five eighths extra on sides.
Result is two pieces 33.25 x 18.25.
Cut insulation and cotton batting 16.5 x 20.
baste insulation & batting together with shiny side of insulation out.
Sew two fabric sides wrong side out the long way.
Turn inside out.
Insert filling (insulation, batting, with insulation facing top).
Run stiches across short ends to lock filling in place.
Use a wide roll hem (approx 2″)at each end.
Sew long edges to lock pellon in place.
Baste layers together and use walking foot to quilt the insulated surface.

For straps:

Cut two pieces of fabric 13.25 x 6.25.
Hem the short ends.
Sew the long seams inside out.
Pull them through to be right side out.
Cut two pieces of fuzzy velcro 2″ x 5″.
Straddle the seam with the velcro and sew in place.
Fold the opposite end of each strap and sew together.
Use reinforcement stiches to attach the straps to the hems of the apron.

With an appropriate mobile arm support, I hope to some day return to creating art such as Quiet Harbor now part of the Muscular Dystrophy Association Art Collection.

Since I was diagnosed with Inclusion Body Myositis (IBM) 16 years ago, I have been stubbornly maintaining my independence. I have made use of every technical aid that I could find, beginning with canes and walkers and scooters and ultimately graduating to wheelchairs and hospital beds and overhead ceiling lifts. I started with a swing away lift in the back of van to take my scooter with me wherever I went, then bought a van with a ramp and a transfer seat, and ultimately moved to a van with an ez-lok system in the driver’s position. All these were steps to allow me to independently get around. I adapted my bathroom and my kitchen so that I can could continue to cook et cetera. I adapted my studio, even my workbench in the garage. I designed and sewed special shoes, pants, and leggings. No matter what, this disease was not going to get the better of me.

Today I am reluctantly admitting that this is one battle that ultimately I could not win. IBM is too progressive, too relentless, too untreatable. The final straw came when my right shoulder and arm became so weak that I could no longer raise my arm much above my waist. This meant that it was no longer safe for me to drive. It also meant that I could no longer chop vegetables or stir a skillet. It meant that I could no longer hold a paintbrush and create art. And worst of all, it meant that I was no longer an appropriate caregiver for my wife, whose own battle with Myotonic Muscular Dystrophy was not going well.

The first thing I did was have my van converted once again, only this time in the opposite direction. I had the passenger seat moved over into the driver’s seat position and put the ez-lok on the passenger side. This meant that I could pull into the van and lock myself in on the passenger side — provided I had found a willing driver to take me where I needed to go. Fortunately, my friends and family and neighbor have pitched in and I still have been able to get around when absolutely necessary. Perhaps more importantly, my wife, who also can’t drive and who has more medical challenges than I, could get to her various doctor appointments. When drivers aren’t available we are able to get to appointments using the accessible bus transportation called MTS access. It gets the job done, but it is certainly not a convenience. I plan an article on the general subject of bus transportation (and lack there of) soon.

But the really big change I have made is to hire caregivers for the two of us morning and night. The loss of arm strength meant that I was at great risk of being stranded when trying to use my ceiling lift to get into or out of bed or onto and off the toilet. After several close calls and more than a few minutes of hanging suspended in a very painful and awkward position, I realized I simply couldn’t go it alone anymore. It is an expensive adaptation and one that we will not be able to afford indefinitely. But for now it is getting us through each day. In future articles I will talk more about the good points of having caregivers.

I am also searching for a “mobile arm support.” The right one might restore some of the functions of my right hand and could possibly let me try to paint again.

Where Was I?

Clothing, DIY, Daily Living, Get Creative, Mobility, Motivation, Muscle Disease, Sewing, Vehicle Modifications 7 Responses »

Oct 112011

This shows how badly I needed a custom back for my wheelchair.

I apologize for the length of time that I have been absent from my blog site. Over the past few months, my upper body strength has deteriorated dramatically. I had always assumed that my illness (Inclusion Body Myositis) would continue to progress slowly, as that is how it is described in the medical literature. However, you can’t always believe what you read. Just since this spring, I have lost the ability to raise my right arm. This has also caused me to give up driving, abandon any thought of painting, and even give up using my iPad (can’t lift it). It has also forced me to develop a lot of additional tools that I need just to get through the day.

To be honest, I have been more depressed than at any point in my disease progression, and this has caused me to lose motivation. I am finally coming to grips with my new status and am ready to renew the fight. In fact, I am finishing up work on a song that hopefully will inspire me to persevere. It is called, “I won’t stand for that.” As soon as I finish production, I will be posting it here. (I am no singer, but I did have some musical ability in my previous life.)

I have also recently designed a unique pair of “shoes” that I can put on by myself and I will demonstrate those in the next couple of weeks.

Another major milestone has been the acquisition of a custom–molded back rest for my wheelchair which has made a huge difference in my general well-being. More to come on that as well.

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.

Sewing Custom Wheelchair Aprons

Bedroom, Clothing, Crafting, DIY, Daily Living, Inclusion Body Myositis, Kitchen, Sewing 5 Responses »

Mar 162011

When my Work Table apron gets dirty, I just remove the masonite panel and throw the cloth portion in the wash.

I first took up sewing to fill my need for a special type of “apron/worktable” that would be helpful and safe to wear when in my power wheelchair. I demonstrate three of them and explain their fabrication in the video below. It is the first in a new Life! disabled Video Series. Future videos will demonstrate topics such as using overhead lift systems to remain independent, driving with hand controls, and using GarageBand on the Apple iPad to create music.

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.

Why (and What) I Sew

Clothing, DIY, Daily Living, Get Creative, Motivation, Sewing 2 Responses »

Jan 062011

I took up sewing because I couldn’t find ready-made solutions to many of my special needs. For example, when I was no longer able to put on a belly bag by reaching behind my back, I needed something different – a bag that would attach to the sides of my wheelchair using Velcro.

But of course there were a couple of things in the way of turning this idea into reality. For one I didn’t know how to sew, and for another, I didn’t have a sewing machine.

When I began shopping for a machine I soon realized I had yet another problem – most of them rely on a foot pedal for operating the machine and I didn’t have the use of my feet. Fortunately, I discovered the computerized Brother sewing machine that you see pictured in the Amazon ad at the bottom of this post. It has pushbutton operation located conveniently near the needle.

One button starts and stops the machine, another lets you back up, for locking stitches, and the third raises and lowers the needle. In addition there is a slide switch that controls the speed of sewing so you can start out slowly and, once you have everything lined up properly, increase the speed.

My Brother CS6000i sewing machine plus some unique accessories.

I also make a great deal of use a special implements such as a pair of needle nose pliers for manipulating the thread, a pair of vise grips that helps me turn the small screwdriver needed to change the presser foot, spring loaded pinking shears, a glue stick for temporarily putting hems and seams together, and a magnet for holding and picking up pins.

Two views of my custom belly bag showing velcro straps and roomy vinyl pockets.

My custom made belly bag has a place for everything I need. The straps have velcro ends that attach to the frame of my wheelchair. I it with roomy pockets to make it easier to take out my wallet, cell phone, keys, etc.

Here is the belly bag that I designed and sewed: I placed strips of heavy duty velcro on my wheelchair, and then sewed velcro onto the bag straps. I made pockets for all of the items that I typically need to take with me whenever I leave home.

Since I began sewing, I have created many other items uniquely suited to my situation (and perhaps to others as well). Some of the items I have made include a unique “robe”, an art apron, a cooking apron (with hot pad material inside), and a worktable with a removable wooden insert so that I can throw it in the washing machine when it becomes soiled. I will describe these items in more detail in a later post.

Future projects include making my own shoes to fit my edema – swollen feet, and a padded strap to help lift me from a lying down position to a sitting up position in bed, using my overhead lift.

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.

You call it shelf liner, I call it leg lifter.

Bedroom, Crafting, DIY, Daily Living 1 Response »

Oct 132010

The lip of my shower is only 3″ high – it might as well be 3 feet when it is time to transfer. I can use gravity to slide back and forth between chair and shower seat, but gravity also keeps my feet planted on the floor. It’s even tougher getting into bed, when I need to drag my dead weight leg up onto the mattress.

Scissors cutting shelf liner into a narrow strip.

Use scissors to cut shelf liner into a narrow strip that will become a strap for leg lifting.

These are problems, but nothing a trip to a hardware store and a pair of scissors can’t solve. (Or you can order from Amazon, using the link at the end of this article.)
This liner, the rubberized type, is light weight, strong, and won’t slip, either off my leg or out of my hands.
One roll can provide 3 or 4 straps. I keep one by the bed and another in the bathroom.

Lifting a leg with a strip of shelf liner.

How I lift my leg with a cut strip of shelf liner.

The others are spares, because they will wear out after a year or so. I also use it to finish getting into bed. I simply loop it around my leg, just above the knee, and then pull my leg into bed.

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