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April 15, 2011

This is my 4th yearly update since MYOMUSINGS was created in 2007.

As of this writing, the site has had a total of 6,675 visitors from all over the world: 48 countries in all. It still amazes me. The feedback that I am receiving on an ongoing basis is always very positive, and I find it encouraging that myositis patients and/or their families use it as a tool for information and knowledge to come to grips with IBM, such a rare, debilitating and still too-little-known disease.

Re-reading last year’s update I find that really not much has changed for me in terms of my IBM:FRS (functional rating scale). I saw Dr. Amato last month, and the scale for me still adds up to 18. Wow! This is reassuring on the one hand, however, even I know, and Dr. Amato had to confirm that, after doing his strength evaluation, I continue to lose strength and muscle mass. When I asked if one could reach a plateau of sorts with regard to functional abilities, he would not say yea or nay. His reply was non committal. He said IBM is so rare that we do not have sufficient data or studies that would give us insight into that. I guess my sense that I am in a temporary holding pattern would only be accounted for as “anecdotal evidence”. Here again I have to find my own way “pioneer fashion”!

tree in bloom


That I am losing more muscle mass is rather obvious to me because of my weekly visits to the pool. Many of the exercises that I have been doing since 1997 I've had to modify to some extent over the years, and some I had to give up completely. For example: we use a step/bench to do step up and down exercises. Regrettably, I had to give up this approx two years ago. However, I am still able to do the freestanding squats. (Not my favorite, but an important exercise.) Simply walking forward in the water, I must resemble a stork since my knees automatically rise up now when I take a step forward. Interestingly, when I walk backwards, I can do that in regular fashion, toe first then heel down. I guess the hamstrings are not affected by IBM and they help me with that. Also, walking sideways, while flapping my arms is still no problem, but I had to give up using the ankle float strips, otherwise I would lose my balance. Routinely I do leg swings forward, sideways and foot circles as well as leg raises and kicks.

My favorite exercise is straddling a “noodle” and bicycling around with it. It is the only exercise that will get my heart rate up, so when I am ready to leave the pool I feel good circulation all over my body. In between, I do make a point of doing stretches, mostly to keep my calves from contractures and to limber up the back. Some of the paddle exercises for my arms have to be done very gingerly, lest I aggravate my tennis elbow. Doing the breast stroke while I bicycle is getting harder on my weakened arms and keeping my fingers closed is almost too much.

My exercise program was developed for me at the time to strengthen my quads. Obviously it has not helped to retain them. As much as we try, what we do lose we cannot build back. However, because of these exercises I have strengthened the ligaments and tendons in my knee and hip joints and firmed my gluteus maximus, all of which helps me to this day to be still able to get up from my non-elevating wheel chair and transfer to another place. In a sitting position, I am still able to pull up my knees to my chest, but I cannot move my legs forward even the tiniest bit. Even with the walker I can no longer take a single step.

sunshine on the table

some of this is a little bit more up-close and personal

Getting into bed (total height is 27” at top of mattress) means parking my wheel chair parallel to the bed so that it is facing the walker that I keep there to help me. I get up from the chair and using the walker for balance, I slide my left leg sideways to the mattress. With that support on the back of my leg I can now pivot and sit down on the bed. Then I curl up by pulling up my knees and roll myself in. Once on my back I can make a “bridge” to rearrange my night gown and then turn to my preferred left side to sleep.

I should mention here that for quite a few years now I have been using a small pillow (the squishy MOSH kind) between my knees and lower legs for comfort and cushioning. Furthermore I am also using a memory foam contoured pillow to support my weakened neck. Wearing a night gown that is satiny/silky is of great help when it comes to turning over in bed. For comfort it is nice if the inside of this material is brushed or flocked. Having to wear a “cotton johnny” during a hospital visit practically renders me immobile.

Must haves on my night table include Kleenex, a small disposable paper cup, and a glass of water. The first two help with disposing the accumulation of phlegm/saliva that because of its consistency I have not been able to swallow for a long time now, especially when I lie down. I either have to spit it out or wipe out my mouth. I find that during the day time when I chew gum the production of saliva is activated which helps to thin it and I can swallow. Chewing gum may not be ladylike, but I guess it beats spitting!

When it comes to footwear, nothing but ABSOLUT GRIP PROOF shoes or slippers will do. I found out early on that unless I have adequate footwear I simply cannot get up from any sitting position.

One of the questions in the FRS questionnaire has to do with handwriting ability, and I still give myself a 3 on that. I can still write but with much effort and not for any length of time. A must for me is a pen that has sufficient width plus a rubber part to grip. The easiest for me to use is a fine line felt tip pen which glides smoothly over the paper and does not need to be pressed down like some ball point pens require. Holding a pen for me is like holding a chop stick with straight fingers.

I can still type (with many spelling mistakes due to poor finger function), but I find that I have to hold my left hand/wrist somewhat turned inward to make my fingers touch the key board. Eventually this will catch up with my right hand, and I will then have to look into the Dragon software.

As mentioned in my previous updates I have to be very aware of how I use my precious joints and extremities. The slightest injury can mean that it zeros out or interferes greatly with my previous independence and safety when it comes to transferring or pivoting. At times, I think I am like a trapeze artist; any wrong move can mean sudden disaster.

My life is definitely in a delicate balance and I would say that this also applies to my emotional equilibrium. I am very much aware that, as much as I may appear to be strong in facing IBM and all the adversities that go along with it, it is a tender stage that can easily be disturbed by negative events or emotions. (Like the recent malfunction of my stair lift!) I do aim to stay away from reading about or watching news of disasters, tragedies or mayhem. Instead I conquer the occasional “WISP” day (wallow in self pity) by surrounding myself with positive people, listening to soothing and uplifting music and keeping a keen eye on my own thoughts. I believe that negative thinking is like being trapped in quick sand. Before you know it, you will drown in it.

With kind permission from Diana Kopulos, I will post a picture here that she created on the subject.

Diana Kopulos - Color Your Thoughts
Color Your Thoughts

Diana lives in Wyoming and is the caretaker for Jim Swindler who has been diagnosed with IBM.


As mentioned in earlier updates I still cook meals 2 to 3 times a week...always enough to serve us a second time around. My microwave has become indispensable!

In the past I liked to use a pressure cooker on occasion, but my weakened arm and hands will not allow me this way of cooking any more. So my latest approach has been the use of a crock pot which has the added benefit of allowing me to prepare a meal in the morning when I still have the energy to do so.

An occupational therapist taught me that it is much easier to slide a full bowl or pot over the counter to the stove versus lifting it. Also, to avoid scalding accidents when draining pasta, ladle as much hot water out in portions, before you slide the pot to the sink to drain.

These days peeling potatoes is out, but boiling potatoes with the skin is in. This works especially well with the red skin variety. Another neat thing to share is about oatmeal. For many years now, cooked oatmeal has been my breakfast in the morning. To avoid the cleaning of the pot each morning I cook up a larger batch using 1 ½ cups oatmeal and 3 ½ cups water. When ready, I use the first portion that morning adding a touch of cinnamon sugar and a tablespoon of flax seed oil. The remainder is kept in a plastic container in the fridge. The next day the porridge will be nicely congealed and can easily be cut into 4 portions which quickly reheat in the microwave with a little more milk/water. I do prefer this to the prepackaged instant oatmeal versions with all their extra sugar and preservatives. It also saves me from scrubbing the pot every day.


This is not connected in any way with my diagnosis of IBM, but has all to do with my also having been diagnosed with Sjoegren’s Syndrome. Years of not having enough saliva and the right kind of enzymes in my mouth have wreaked havoc on my teeth and these past years have been filled with various tooth problems. Many previous tooth extractions brought me to the point of having to consider dental implants. I was loath to get into that (fear of the unknown plus the very high cost) but I was told with Sjoegren’s I would be better off with implants versus dentures. A tough decision to make, but I was told I am worth it!

So this past year has seen me making multiple trips into Boston to have work done at the Tufts School of Dental Medicine. At this point, it is still a work in progress (so far 4 implants plus a bone graft), but I am still waiting for the final crowns. I can’t wait to finally have enough molars again to be able to enjoy a salad or a nice piece of meat.

Thankfully my swallowing problems have been kept in check during all this, and it is almost one year now since I had my last throat stretching procedure. At this point I don’t see the need for an intervention and am grateful that I am able to get chewed food down - of course always with the help of extra liquid.


wheels leading the way - 2010 Walk for Myositis
2010 Walk in the Park for Myositis

With the continued support from of the St. Paul’s Algonquin Lodge and their group of dedicated masons, we had another very successful benefit walk for myositis that raised over $6,500 for The Mysositis Association (TMA) to help find a cure for all forms of myositis. The third WALK IN THE PARK is planned for September 17, 2011 and news about this will be posted when it becomes available.

Bill and Dagmar - 2010 Walk for Myositis
Bill and Dagmar - 2010 Walk in the Park for Myositis

Mike Shirk an IBM patient from San Diego has recently started an excellent blog with all sorts of disability related issues. We made a link to it on our home page and encourage you to check it out. You will find some great information there.

In closing I want to make a suggestion: If anyone that feels he or she may have benefited from visiting my web page, they are welcome to make a contribution to TMA with mention of MYOMUSINGS. Funding for orphan diseases is still much too scarce and over the years TMA has been able to give grants for research with the help of gifts from donors. We are all in this together, and by supporting TMA we come closer to finding a cure. This is a goal I gladly support!

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

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