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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!
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.
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
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.
PICTURES AND LINKS
I am posting a few more pictures of assistive devices I've found helpful below.
The lever extender makes adjusting the chair possible for weak hands.
The stair lift allows me to access the second floor.
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
If you stumbled here directly and would like to read my story from the beginning, start here:
or you can
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