Living with Inclusion Body Myositis
My name is Gordon Osmond, I am a retired acrylic and oil artist and I live in West Albury NSW. I have a debilitating neuromuscular condition called Inclusion Body Myositis or IBM.
My first and last visit to a local specialist was a disaster. He wouldn’t accept me as a patient because my condition had progressed. I understand as there is no active treatment, rather only making life more comfortable. I thought I would write my experiences living with IBM and how I have handled its problems, and I hope this helps someone else. Please remember that I am not a doctor and have no medical training.
Simply put, Myositis is a muscle wasting disease. The first warning is muscle tiredness and stumbling on stairs. You may be able to cope for a time with a wheelie-walker. Falls become more and more common. Now I live in a motorised wheelchair that can stand me up, a recliner that can stand me up as well or a high / low bed that can also rise up to make standing easier. I only take the few steps between the three using a walker.
All of my muscles are affected, including bowel muscles, finger muscles and even eyelids. My eyes never close. I have eye drops which are good. At night I wear eye masks, a CPAP mask and an oxygen line. It’s quite a sight!
There are other signs. I found I was dropping things like cutlery and crockery. My speech became slurred and I have found I could no longer sing. Consequently, I have great difficulty swallowing food. If I can eat anything I swallow with a mouthful of liquid. As a result, I am fed throughout the night through a PEG tube into my stomach. The PEG site can become a problem, even infected and painful. If my PEG site pains, I change the dressing. But if it does not, then I leave it alone. I am showered every second day and only then is the dressing changed.
The liquid food that feeds me has its own problems. There is a no fibre food which causes runny stools and a high fibre food which causes blocked stools. There is no mid fibre food! Bowel pain is common and Buscopan has limited effect.
I am incontinent so I have a catheter tube and bag. This has its own set of troubles. If it becomes blocked, then bladder pain is severe. If pain starts, check for crimped tubing. If this doesn’t work, then, using a big syringe partly filled with saline water if you have it, plunge most of the water in the tube line and use a push pull pump action to clear the blockage and then pull the water out. If this doesn’t work after a couple of tries you will need to have the catheter replaced by a trained medico. Don’t wait! Get help fast, as the pain is severe.
The best cushion that I have in my wheelchair is also the most expensive without much change from $800. It is a Roho High Profile Quadtro Select Cushion. This is the only one that have found leaves me pain free. Get advice from an OT because sizes are important. I also have a Roho on my recliner as well. There is a similar mattress on my bed, a vibrating air mattress, called an Alternating Air Premium 5.
There are few treatments for IBM. Someone else I knew was given monthly plasma infusions which helped. I am using oxygen to help retain muscle strength. In my wheelchair I use an oxygen cylinder which is expensive, but I use a “Concentrator” machine while in bed or in my recliner. The concentrator costs about $1500 but can be hired.
I live with a lot of pain and discomfort. You have to get help with the pain. Even the most professional people have poor understanding of pain. If you are given drugs orally or through the PEG tube, you will have relief after a half an hour.
Getting the right equipment to help you live a meaningful life is very important. Walkers, or wheelie-walkers are common. Remember these things when buying yours.
1. 4 wheels are safer than 3 wheels
2. Bigger wheels are safer than smaller ones
3. Some collapsible walkers are not rigid enough
4. There is a right way and a wrong way to grip the handles
5. Get help from an occupational therapist (OT)
Wheelchairs have to be chosen early. If you stop driving a car, that is the time to buy or hire a motorised chair. Think carefully about buying an electric scooter. They are not comfortable and possibly unsafe on buses. Trains are OK but not for long journeys. Some trains and buses don’t have an access ramp. Be aware that some taxi companies won’t carry a scooter, and you are required to get off your scooter and travel on a seat in the taxi.
If you use a wheelchair without a motor then you must always have someone to push. Then you become reliant on someone else. Welcome to the world of the electric wheelchair. You have to learn to drive properly or you become a danger to yourself, to others and the place where you live. Your chair must be small enough to manoeuvre around your house and that requires skill. If you want to go places away from home your chair should be suitable. Anyway, get help from an OT. It’s better to buy an electric wheelchair earlier rather than later so you can learn properly! My wheelchair is just right. It’s a Quickie Pulse 6.
Living with Myositis is like living on a staircase. If you do not keep using something, you cannot usually recover even using exercise. A step down cannot be followed by a step up. So, keep using what you can.
From what you may have gathered, I don’t live at home any more. Our home was not built for a wheelchair. My wife would have found me an intolerable burden that I was not prepared to give her, even with home help. I have moved to an excellent non-profit aged care hostel. I go down to the dining room for “meals”, a taste of cheese and a drink of tea or coffee. By maintaining a semblance of meals I don’t get the food cravings that are common with PEG food.
I try to remain involved and active, I go in my wheelchair 5 minutes to a local corner store, and home which is just 10 minutes over the hill. Every Friday, weather permitting, I go into the city. I use a wheelchair maxi-taxi. I do whatever shopping I need, go to the city library and end up for free coffee at a local church with some friends. My government pays half my taxi bill via the Taxi Transport Subsidy Scheme (TTSS) scheme and that helps me to keep out and about.