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Myositis Walk - September 2011
Another year has passed, and I've continued to travel on my journey with my constant companion, IBM. (Inclusion Body Myositis)
Foremost to mention is that I am still holding on to my plateau of functional abilities, which according to the IBM-FRS, is hovering around 17. This means that I am still able to function somewhat independently: able to shower and get dressed without help. Keep in mind that this does require many compensating techniques learned over time; each of which now seem "normal" to me, and I do them automatically. Furthermore, what I am still able to do at home does not always translate into my being able to do it somewhere else. Everything in our home is positioned or located just so to suit my very individual and particular needs. Any slight deviation from that and I may not be able to transfer, raise myself from a sitting position, get up from the john, etc. Also, everything takes an inordinate amount of time and a lot more energy than a healthy person could ever imagine. Yes, taking care of myself has almost become a full time job!
My biggest limitations these days are restrooms outside of my own home, be they public or at friend's homes. I can only use a urinal then, which I keep cleverly hidden in a bag behind my wheel chair seat. Due to poor finger function, I have now more pronounced trouble pulling up my pants. (this is when I have to admit to myself that the progression of this disease is ongoing and relentless) Rather frustrating, and this forces me to replace many of my pull-on slacks with a larger size to make the task easier. Besides loose-fitting slacks, anything that is too snug has to be replaced with looser fitting items so that it will be easier to dress myself and remain independent. E.g., wearing a cardigan over a long sleeve top: I may be able to put it on, but will have trouble taking it off later due to poor finger grip function.
Staying with this subject, I found out recently that there is a hand surgery option, called tendon transfer surgery for IBM patients. This can restore finger function to the point of being able to once again tie shoes, button clothes, use zippers and more. Amen to that!! This specific surgery has been successfully performed on 4 IBM patients by a hand surgeon named Thomas Brushart at Johns Hopkins Hospital in Baltimore.
The only caveat to being a candidate for this surgery is that you have to demonstrate strong extensor function and the joints have to be flexible. If your joints are stiff or if you have developed contractures, the surgery will not be successful. The other rather important thing with this surgery is that your hand/arm will be out of commission for at least 5 to 6 weeks. Because of that, in my particular case I would require extensive assistance. The loss of use of just one limb will render me pretty much immobile and helpless during that time. This is an important point to discuss with the surgeon as is the possibility of approving a stay in a rehab setting afterwards. Nevertheless, I intend to pursue this and hope that Dr. Brushart can recommend a hand surgeon in the Boston area to perform this surgery, which recovery aside, would be considered day surgery. As many of you can relate, I find the loss of finger function much harder to accept than the loss of ability in my legs. This surgery, in a way, seems like an answer to my prayers.
My swallowing has stayed at an acceptable level, at least for me, but requires repeated throat stretching procedures; usually twice a year. I still have occasional choking episodes but over time have learned not to get frantic and to face them calmly. So far I have avoided getting aspiration pneumonia. My primary care doctor, who I see at least three times a year, always makes sure that my lungs are clear.
I want to mention here that over time I have adopted a compensating maneuver to help my weak throat muscles when I need to cough up trapped food or accumulated phlegm. I will use the fingers of my right hand (pointer and middle) and lightly press them down on the left side of my neck in the area of the windpipe. By doing that, I believe I support the weakened muscles and they have less of a job to do when coughing.
Come to think of it, at the time when I was still walking but had trouble with stairs, I would use a similar technique. I would put my hand on my quads and it made it easier to manage a step up or down.
Sadly the weakened throat muscles in addition to the constant clearing of my throat over the years have also led to voice changes and loss of my ability to sing, hum or even whistle. It seems that this disease robs us of far too many things that, from a therapeutic standpoint, could help us cope with it better. Oh, the "mental gymnastics" that we have to go through on dealing with IBM and all its accompanying losses, it is truly mind boggling!
I tend to get swollen ankles and feet, especially in warm and humid weather. Of course it does not help that my days are spent sitting in a wheel chair. To stay ahead of lymphedema -and upon recommendation by a massage therapist- I bought a CHI massager machine in August and have used it faithfully once a day. Since then I am holding the edema in check. There are different models of CHI massage machines available on the internet, and if you go for alternative approaches you may want to look into them. The original Sun Ancon Chi machine was a featured segment on the TV program The Doctors. (The YouTube video is above.) This machine can cost upwards of $400. I chose a knock-off model priced at $150 and am pleased with the results. (this equals 2 visits with a massage therapist and has more than paid for itself) One of the benefits of using such a machine is that it will increase circulation and oxygenate your blood. I find that after a 15 minute session my feet and hands are slightly tingly, and I do feel relaxed.
Me exiting the new van.
In July, when it became increasingly difficult for me to get in and out of our Ford Taurus, we finally bit the bullet and bought a Dodge Grand Caravan with the Braun Entervan kneel van modifications. These modifications allow me to easily roll up into the van and sit on the passenger side next to my husband, securely locked in with the EZ-lock system. With the push of a button the wheel chair is released, the door opens, the ramp slides out and I can exit. What a treat and luxury!
NEWS ON THE HOME FRONT
Bill and I last summer.
In December my dear husband and steadfast supporter was laid off from his job. Actually his whole department was eliminated. Because of the present economic climate, this was not totally unexpected. He could have retired four years earlier but decided to hang in there a little longer. Now the decision had been made for him.
I actually was rather happy about this turn of events since it became more and more clear to me that I needed help around the home, especially with cooking. With its multiple needs of getting up and down from the wheel chair, it was taking far too much out of me. Bill has always been handy in the kitchen and is perfectly able to put a meal on the table, but while he was working I would hesitate to pull him in. Now he shares the cooking duties with me, his Princess, who is mostly coaching and letting him do the grunt work. I am blessed to have his love and support.
WALK IN THE PARK
Me and fellow walkers - September 2011.
There was another successful walk in September that raised $6,660 for TMA to find a cure for myositis. Special kudos again to the Masons of the St. Paul's Algonquin Lodge who so selflessly and generously made this happen, and also to all the friends and family who participated and/or sponsored this walk. Our next walk is planned for September 22, to coincide with Myositis Awareness Day.
To end this update I want to go over some thoughts. They may have been mentioned elsewhere on this site, but are important to keep top of mind:
Don't lash out at others when you find yourself angry about this disease.
Catch yourself in negative thinking - and turn it around.
Identify folks and situations that drain your energy and avoid when needed.
Remind yourself to slow down.
Do only what you want and need to do, not what you feel you should.
Do not take on other people's issues.
Permit yourself to be mindful and grateful.
Remind yourself that you have been down before and you have survived...
therefore you will also conquer the latest or next hurdle.
BUT above all, cultivate gratitude and remain cheerful, no one likes to spend time around grumpy folks. (everyone gets grouchy now and again, just don't make it a habit!)
I do believe that knowledge is power and that education about our disease is paramount in our medical care in partnership with the medical community. To be well informed is to be empowered. Do take full advantage of all the links given on the left of my home page, share the knowledge you find there with family and friends, DO YOUR part in making MYOSITIS a household word.
In the last 12 months we had to say good bye to 6 friends from our close IBM community, may they rest in peace:
Craig Burr, Idaho
Leo Lacharite, Canada
Jim Swindler, Wyoming
Deane Good, Arizona
Dan Schuler, Indiana
Jack, (2cats) Arizona
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