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Myo Support

You don't have to suffer alone

Myositis-Canada-muscular-dystrophy-association-non-profit

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.

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.

Physical Therapist

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.

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.

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.

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

 

It was once thought that those with IBM should refrain from exercise so as not to damage muscles any further. However, it is now considered beneficial to exercise. There are many muscles that are not impacted by IBM and these can be strengthened, and in some cases, these muscles can assist the damaged muscles. Also, remaining muscles can be strengthened and the life of those muscles can be extended. IBM patients can work with a physical therapist. However, most physical therapists are unfamiliar with IBM. Patients should advise their PT as to the characteristics of IBM and the physical therapy required. Exercising can improve the following for IBM patients.

- Muscle Mass

- Strength

- Balance

- Gait

- Flexibility

- Quality of Life
 

RECOMMENDED EXERCISES

An exercise program using light weights and Therabands (can be purchased on Amazon) is  recommended. These exercises can be easily performed at home. The Karolinska Institute in Sweden has published an exercise program for those with IBM that can easily be followed at home (see following link).

Exercising in a pool is an excellent way to workout. However, it may be very difficult to get in and out of the pool. Some communities have fully accessible pools and it is worth seeking them out.

Treadmills, recumbent bicycles and rowing machines are a great way to achieve cardiovascular exercise. However, make sure that you can use safely. The recumbent bicycle is probably the safest option, since you are seated. The rowing machine is another safe option, but it is low to the ground and may be difficult to get on and off.


 

Fingers

Do not neglect to exercise and stretch your fingers. IBM affects the flexor muscles which control your fingers. As these muscles weaken you will lose the ability to flex your fingers and to make a fist. Exercises, such as, squeezing a tennis ball can help extend the life of your fingers. Finger exercising gadgets can be purchased on Amazon. Wrist curls with a very light weight (1 to 3 lbs)are also beneficial. These exercises can be done anytime, such as while watching television.

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. 

 

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.

To download the IBM-FRS go to IBM-FRS-ALS.

Myositis-Canada-helping-canadians-recover

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.

Weight Lifting Hooks.tiff

GRABBERS/REACHERS

Always handy for reaching from your wheelchair or bed. Available on Amazon or mobility stores.

Grabbers_Reachers.tiff

BED MAKER ASSIST

Useful tool for making the bed. Wedge shape lifts mattress. On Amazon for $24.00.

Bed Maker Assist.png

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.

Half Step Cane.tiff

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.

Adaptive Cutlery.tiff

JAR OPENERS

Jar openers make it easier to get those jars open. Many different types on Amazon. Also, see assistive can openers.

Jar Openers.tiff

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.

Lift Chairs.tiff

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.

IndeeLift.tiff

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.

Portable Seat Raiser.tiff

CHAIR HEIGHT RAISERS

Raises chairs 3.75 – 4.5 inches. Sturdy and portable, from Kaboost.

Chair Height Raisers.tiff

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.

Toilet Seat Raisers.tiff

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.

Phone Hangars_Grips.tiff

 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.

Rollators.tiff

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.

Scooters.tiff

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

Electric Wheelchairs.tiff

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.

The Myositis Association

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

Follow along with Facebook.

See and share posts from people around the world that have Myositis.

 

Inclusion Body Myositis Support and Understanding

Inclusion Body Myositis

Myositis Support World Community

NEED MORE SUPPORT? JOIN THE MYOCAN COMMUNITY 

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