Myo Support
You don't have to suffer alone
Muscular Dystrophy Association
Myositis falls under the umbrella of the Muscular Dystrophy Association. Please register at Muscular Dystrophy Canada. This may require a letter from your doctor stating your disability. Once registered, Muscular Dystrophy may help with the costs of wheelchairs, walkers, stair lifts, scooters, etc. They have a regional staff who may work with you as required.
Assistive Devices Program (ADP)
ADP helps people in Ontario with long-term disabilities pay for customized equipment like wheelchairs and hearing aids. For other provinces, please go to the provincial website for detailed information on support programs.
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Assistive Devices Discounts
Wellwise by Shoppers Drug Mart sells a variety of assistive devices from grab bars to rollators. On Thursdays, all seniors receive a 20% discount. This is a significant savings if you require a product that they sell.
DID YOU KNOW
While there is no current cure for IBM, diet and exercise can help slow down the progression of the disease. Much research has been done on this by Dr. Tarnopolsky.
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He is the premier Canadian scientist working with Myositis and is plugged into the worldwide network of similar researchers. He has made it his personal journey to come up with potential remedies to offset the disease’s effects.
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His videos, with more detailed information on his research, can be seen under the Canadian Research page.
DIET
A protein rich diet, plant based or animal based, can help to keep and build muscle mass. Anti-inflammatory foods such as berries, nuts, dark green vegetables, legumes, fatty fish, avocados and tomatoes are beneficial to protecting muscle cells. A Mediterranean Diet is rich in these foods.
Dr Tarnopolsky recommends several supplements to help against the progression of IBM. These include Vitamin D, CoQ10, Omega 3, Vitamin E and Creatine Monohydrate. Creatine has been proven to build muscle mass and taken with an exercise program can help strengthen muscles. Dr Tarnoplosky has founded a company developing supplements, such as Muscle5, for patients with muscle diseases. A complete range of products can be found at Stay Above Nutrition.
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Creatine(monohydrate) can also be ordered from Amazon or from health food stores such as GNC. Creatine is best taken in a smoothie, yogurt, applesauce or juices.
EXERCISE
Exercise is beneficial for inclusion body myositis. Physical therapy and exercise can help maintain muscle function, improve aerobic capacity, and even increase muscle strength. IBM patients are encouraged to see a physical therapist with experience in neuromuscular diseases. In most cases this is not possible since most physical therapists are unfamiliar with IBM. Patients should advise their PT as to the characteristics of IBM and the physical therapy required.
Prescribed exercise interventions for patients with Myositis can improve the following:
→ Muscle Mass
→ Strength
→ Balance
→ Gait
→ Flexibility
→ Quality of Life
RECOMMENDED EXERCISES
Most IBM specialists recommend cardiovascular exercise and frequent low-resistance exercise. Heavy weights should generally be avoided, as they can cause injury. Light weights and Therabands (can be purchased on Amazon) work well. Many people with IBM enjoy recumbent exercise bicycles. Look for an exercise class that is appropriate for your abilities, and don’t feel that you must keep up with everyone else. Exercise in warm swimming pools is especially popular, since the buoyancy of the water reduces joint stress and makes it easier to move. A gym in your community may have aquatic therapy classes in therapeutically warm pools, with gentle steps or a ramp into the pool, and a lift for those who have trouble entering or exiting the water.
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Physical therapists and personal trainers, if they aren’t familiar with IBM, may be too aggressive in their recommendations when you’re just starting an exercise program. Go at your own pace. Start slowly. VERY slowly, if you’ve had problems in the past. Increase your exercise gradually . You might surprise yourself and find out that you can improve more than you expected.
STRETCHING
Stretching and range-of-motion exercises are important, too. As muscles weaken and motion decreases, stiffness develops. This stiffness makes it even harder for weak muscles to do their jobs.
For example, most inclusion body myositis patients develop weakness of the finger flexors, making it hard to curl the fingers into a fist. With time, the fingers start to become locked into the straight, extended position, making it even harder to flex the fingers. Gently pushing the fingers into the flexed position with your other hand and holding this position can stretch the joints and help prevent stiff fingers. Stretching is most effective at the end of an exercise session, when you are warm.
There are many sources for exercise programs designed for IBM patients.
Please go to the TMA and Myositis Support and Understanding websites for detailed programs. YouTube also has an excellent collection of exercise videos for IBM.
TAX RELIEF
There is tax relief available at the federal and provincial levels.
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Disability Tax Credit
All Myositis sufferers should apply for the federal Disability Tax Credit. This is a significant deduction which is also the gateway to other deductions. This can be applied for on the CRA website. A doctor’s letter is required. Once granted it can remain permanently in your tax status with CRA.
Home Accessibility Tax Credit (HATC)
This is a federal tax credit for those renovating their home for safety and accessibility. The HATC is eligible for individuals with disabilities (qualified for the Disability Tax Credit) and people who are 65 years of age or older at the end of the year. The HATC applies to qualifying expenses up to $10,000 per year resulting in a maximum tax credit of $1,500. You claim HATC when filing your annual tax return, receipts required. Consult your accountant or the CRA website for qualifying renovations.
Medical Expenses Tax Credit (METC)
You may have an eligible renovation that qualifies as a medical expense. If so, you can claim both the federal METC and the HATC. While these costs to renovate a home to accommodate the use of a wheelchair may qualify as a medical expense, types of expenses related to other impairments may also qualify. Consult your accountant or the CRA website.
Provincial Tax Credits
Many provinces have similar programs. Please consult your provincial government web sites or your accountant. For those who do their own taxes, tax programs such as Turbotax, do a great job of identifying these tax credits and deductions. Once you identify your disability, they will prompt for appropriate deductions.
INCLUSION BODY MYOSITIS-FUNCTIONAL RATING SCALE (IBM-FRS)
The IBM-FRS is a 10-point functional rating scale for patients with IBM and is considered a reliable and valid measure of disease severity. Patients can take this test at 3-to-6-month intervals and monitor the progression of their IBM.
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To download the IBM-FRS go to IBM-FRS-ALS.
ASSISTIVE DEVICES
PORTABLE VEHICLE SUPPORT HANDLE
Handy gadget to help get in and out of the car. Fits into the door striker. Two packs for $25.00 on Amazon.
WEIGHT LIFTING HOOKS
These wrist hooks can Velcro to your wrist(s) and use your arm strength to open refrigerator doors, dishwashers and to pick up objects. They utilize arm strength, not your fingers. Two packs for $20.00 on Amazon.
GRABBERS/REACHERS
Always handy for reaching from your wheelchair or bed. Available on Amazon or mobility stores.
BED MAKER ASSIST
Useful tool for making the bed. Wedge shape lifts mattress. On Amazon for $24.00.
HALF STEP CANE
This cane will help you negotiate stairs since it cuts the step up/down in half. Order from Amazon or mobility stores, approx. $100.00.
ADAPTIVE CUTLERY
Larger, weighted handles make it a little easier to grip and use cutlery as you lose the use of your fingers. Order from Amazon for $20.00.
JAR OPENERS
Jar openers make it easier to get those jars open. Many different types on Amazon. Also, see assistive can openers.
LIFT CHAIRS
Lift chairs can take you from a seated position to standing. Be sure to get a chair, such as some of the chairs from Golden Technologies, that has vertical lift and doesn’t tilt you forward too quickly. If you get tilted forward too quickly your legs may give way before you can stand. Most recline and many have heaters. Prices range from $1,500.00 to $5,000.00 depending on features.
INDEELIFT
The IndeeLift can lift someone who has fallen or assist them in getting up and down. It can also be used as a transfer device. There are several on the market. A good mobility store will assist.
PORTABLE SEAT RAISERS
A non-electric portable lifting seat that will ease you into your seat and help you up, gently and safely. Available at Amazon and Shoppers Wellness.
TOILET SEAT RAISERS
There are several ways to raise a toilet seat to make sitting and dismounting possible. The simplest solution is a toilet seat riser that sits on top of the existing toilet bowl. They are generally 4 inches high. They are also portable, and can be used away from home. As IBM progresses these may not be sufficient. Electric raisers, such as the Liftseat, can get you on and off the toilet. The Liftseat rises vertically and then gently tilts to get you off safely. The Liftseat can be combined with an electronic bidet. Newer electronic bidets come with large button remotes to make operation easier. A Bidet will go a long way to help maintain dignity.
PHONE HANGERS/GRIPS
A handy gadget that attaches to your phone or phone case. Hook your finger in a loop and hold your phone. From Cliphanger.com.
ROLLATORS
Most IBM patients start off with a rollator. This allows them to safely be mobile in the house and when out and about. There are many rollators on the market at various price ranges. The model, pictured, is the Athlon HD. It is Carbon Fibre, and is the lightest on the market at 11 pounds. It folds flat and clips together and releases with a click. It comes with a 24-inch-high seat which makes it easier for IBMers to stand from. Its light weight makes it very easy for IBMers to lift in and out of vehicles. It compares with the ByAcre in weight and price but comes with a carrying bag. Rehasense has similar models in aluminum, with all the same features, but heavier, and are more cheaply priced.
SCOOTERS
There are many mobility scooters on the market today. The higher end scooters, such as the Atto pictured below, fold up and store into a luggage sized package that will fit into an airline overhead bin. There are also plain Jane scooters that will get you from A to B. Costs vary from $1,500.00 to $6,000.00.
ELECTRIC WHEELCHAIRS
However, scooters rarely have adjustable seats and most are 20-22 inches from the ground which may become difficult for IBMers to get out of over time. It may be worthwhile planning for the future and purchasing an
electric wheelchair with an adjustable electric seat. The Jazzy Air 2, shown below, has an adjustable seat and can be used inside and out and can fit under a dining room table or a desk. It is not as portable as a scooter and will require a lift or a ramp to get it in and out of a vehicle. Electric wheelchairs range in price from $5,000.00 to $20,000.00
A good mobility store can show you a range of products to suit your needs. They can also give you solutions for transporting in your vehicle or modifying your vehicle to suit. It is worth looking at used products since they come on the market frequently and can be significantly cheaper. If you plan to travel, you should make sure that the batteries are airline approved.
ADDITIONAL RESOURCES
The following sites are excellent resources for information on all types of Myositis.
→ Myositis Support and Understanding
→ Cure IBM Inclusion Body Myositis
→ Yale University - Yale study of IBM that can help you with research and plot your journey compared to others
→ Jerry King Videos - videos by Jerry King on living with Myositis
→ William Tillier - IBM patient with summary of disease and current medical advances
→ Clinical Trials - clinical trials for new drugs from the US and around the world. You can sort by IBM
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Follow along with Facebook.
See and share posts from people around the world that have Myositis.
→ Inclusion Body Myositis Support and Understanding
→ Myositis Support World Community
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