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April 10, 2010
Reaching the age of 21 years, you are considered an adult and have hopefully attained a point of maturity. This year, for better or for worse, Myositis and I have come to that milestone, yet something tells me that the growth process is far from over. I am still learning that the more this disease chips away from my life as I know it, the greater my opportunity becomes for stretching and growing on other levels. For an update on how I have been faring for the last 12 months, read on!

The progression has continued, slowly yes, but also relentlessly. As mentioned in last year’s update, I am still able to function somewhat independently; however, I do have to work that much harder at it, which means slowing things down even more and costing me more of my precious energy. My walker is no longer used for walking but instead as an aid for transferring or pivoting (for example: the occasional visit to the dentist). I am able to use the RIDE (a public van with wheel chair access) to go to my water therapy or doctor’s visits and also will use it to do some errands or shopping during the week when my husband is not available.

I am looking forward to spring and warmer temperatures when I will be back to using my scooter to do local errands independently. I like to take my digital camera along on these outings and driving along Whitman’s Pond I usually end up taking some scenic pictures. Photography is the last of my hobbies that I can still pursue at this point. Pushing the release button with ‘rubber fingers’ that refuse to curl presents more of a problem these days, but I found that putting a ring on my pointer finger over the knuckle, with the stone of the ring pointing down, gives me just enough leverage to push down on the release button. Eureka!

Whitman's Pond in the fall
A beautiful fall day.

All in all, I would say that I found it harder to make peace with the loss of hand functions and dexterity than I have with the loss of strength in my legs and the ability to walk. Speaking of these extremities: my hands and feet are always ice cold! This affects me not only during the winter months, but also during warmer weather. Because of the muscle degeneration, the circulation of blood supply to the extremities functions poorly. I am using a small homemade cushion filled with rice that can be heated in the microwave and used as a heating pad. This works well for me and the cushion stays warm for at least 30 minutes. Also, since it does not require an electric cord, it is much more portable.

This is a subject I have not addressed before. Over time most of IBM patients will develop contractures. This is a tightening of muscle groups that are prone to shrink because of limited or no use. In my case ankles, calves and fingers are affected. Stretching of these muscle groups is of utmost importance to keep some flexibility and range of motion. For example, when I fall asleep at night (always sideways) I make a point of keeping my hand underneath my pillow in a fist shape. Since my fingers can no longer do this on their own I have to passively roll them into a fist thus stretching the tightened muscles. Or during the day sitting at a table e.g. I will roll my hand into a fist to stretch those finger muscle groups.

During water therapy I will make a point of stretching my calves and the pain this generates is a sure sign of the beginning of contractures there. Using the STEP-IT device at home I hope to prevent the ankle joint from becoming any stiffer than what it is already now. I have learned over the years to listen to my body, be very attentive to what is going on and try to make the best of it.

Pool Chair
The chair that helps me into the pool.
Water Therapy Fun
Water Therapy.

As mentioned last year, my swallowing saga continues. I had my throat stretched two more times: in May and then again in November, both with general anesthesia. Neither time was the surgeon able to stretch the UES (upper esophageal sphincter muscle) as much as he had hoped. However, the swallowing has improved enough that over the last 12 months I have actually put on weight. This, as you can imagine, is good news/bad news. Carrying extra weight makes it harder for me to get up from the wheel chair, etc. so I am back to counting calories again. Getting showered and dressed takes not only extra time, but also costs a lot of energy. I hardly notice any more how much moaning and groaning happens during these activities! As I said, the swallowing has improved, but it is far from optimal and there are still the occasional choking episodes. I plan to have my throat stretched two more times this year in order to keep ahead of potential problems.

In terms of my overall mobility or abilities, according to the IBM-FRS (the Inclusion Body Myositis – Functional Rating Scale), my numbers at this point add up to approximately 18 out of a maximum of 40. (40 is the the rating a person with normal mobility would recieve.) Whenever I see Dr. Anthony Amato, my neurologist, at Brigham and Women’s Hospital in Boston he will use this rating scale to document the progression of the disease. A handy copy of this scale can be found at Bill Tillier’s site: IBM Myositis Scale.

In May 2009, I finally sold my Toyota Corolla which had served me well for so many years. Knowing that I had other options for getting around, this was a much less painful step than I had previously imagined. The same applied to surrendering my driver’s license last month in exchange for a Massachusetts picture ID.

The Ride gets me where I want to go
The Ride allows me to get around town...or even into the city.

My two power wheel chairs (one for each level of our home) have become indispensable in my daily life and give me the needed freedom to function independently for the most part. They are strong machines that call for respect and proper use. I have bumped my knees into corners or crunched my toes by not having the foot plate down when I should have or almost took a fall when standing up with the power still on and catching my sleeve on the joystick thus moving the chair forward. Our furniture looks more and more ‘battle weary’ which dismays me on one hand but on the other, I am grateful that the layout of our home allows me to access most areas freely and the nicks and dents on the furniture are a price I’m willing to pay.

This past month I had the opportunity to exchange one of my Jet-3 chairs which was a 2003 model for a Jazzy Select 6 made in 2008. This model has two caster wheels in front instead of the anti-tip wheels I had become accustomed to. So now I am relearning to maneuver around with a slightly different width when passing through a door, etc. More dents again, as you can imagine!

In September there was a very successful WALK IN THE PARK for MYOSITIS in Braintree, MA that raised much needed funds for research. It had been organized by a friend of ours who got his brothers at the Masonic Lodge involved. With their help and together with family and friends the total raised was $4,538! TMA has recently posted a link to a video of this walk on their home page to encourage others to do similar events. You may want to take a look at it. Myositis Walk 2009 I am proud to say that the photographer for this video is our dear daughter-in-law Tricia who graciously granted the use of this video to TMA. Efforts are in the works for another walk on September 18 of this year, to coincide with Myositis Awareness Day. Details about this walk will be posted in due time on the various Myositis boards and also here on my site.

I am posting a few more pictures of assistive devices I've found helpful below.
Car Handy Bar
The car handy bar is small but sturdy.
Car Handy Bar In Use
It's an essential aid to getting in the car.

LaZ Boy Lever Extender
The lever extender makes adjusting the chair possible for weak hands.

deck lift from above
The deck lift is important.
deck lift from below
Without it, my heavy chair would never be able to leave the house.

Stair Lift
The stair lift allows me to access the second floor.

StepIt Excercisor
I use the StepIt to help with ankle flexibility.

I also want to mention that my home page now has the addition of Roly Clulow’s Survive Myositis web site, which I encourage you to click on. He invites everyone to share their story about their disease whether it is myositis or any other form of muscular dystrophy. When you click on Inclusion Body Myositis you will find my article “Embracing Myositis” among the other reports. Under Polymyositis you can read, among other entries, about Fay Stancliff’s or Phil Bousley’s experiences with that form of the disease.

The link I had for Zara King’s web page had to be dropped since it seemed to no longer be working. We have added a link to the Myositis Support Group in Texas, which many of you will already be familiar with.

When you click on the books link on my home page you will find a few additions as well as a few new quotes under the quotes listing.

Dealing with IBM for so many years can be devastating and I am very much aware of how important it is to stay emotionally balanced. It is important for us to avoid thinking in negative terms and be rigorous in controlling our thoughts. I try to be surrounded by uplifting people and take refuge in nice books and music to keep that balance. I am also ever so grateful for my loving and supportive family.

This year MYO-MUSINGS will be three years old. As of this writing it has been visited 4751 times and has been read in many countries. Over the years I have made many new friends throughout the world. My wish is that the chronicling of my journey with IBM will continue to be a source of information and perhaps inspiration for Myositis patients as well as their families and friends.

If you stumbled here directly and would like to read my story from the beginning, start here:

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