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ANNUAL MYOMUSINGS UPDATE
April 14, 2013

And my journey with IBM continues. This is my 6th update to MYOMUSINGS and my web page continues to be clicked on daily. To date we have had over 10,800 visitors from all over the world (with over 68 countries represented) Some of these clicks are repeat visitors, but I am proud to have created a tool that can help other myositis patients and/or their families to come to grips with this rare and to this day still too little known disease, and hopefully; help them to navigate their own journeys.

For me this journey continues to be a source of discovering new things about myself. It is humbling to have to admit to myself how much more IBM has taken away from me over time, but on the other side I have learned - and I am still learning - how much more grateful I am for all the blessings in my life. I am very mindful of cultivating gratitude and police myself when I want to fall into negative thinking. When I look around I see folks who may have better health than me, but they have a miserable life nonetheless. Perhaps life has dealt them a bad hand and they do not know, or are not willing to learn how to play their cards better. I feel so blessed to have a loving and caring husband and family that willingly shares my IBM journey with me. I also have learned that my diagnosis is affecting the loved ones around me just as much. Their losses are on a different level, but they also have to learn to deal with loss and grief in their own way.

Me and Bill at the 2012 Walk
Me and my loving husband, Bill


The following piece was copied from Roly Clulow's web page since I find it important to not only to look our own circumstances, but also from the perspective of our caregivers, our unsung heroes:


CAREGIVER'S BILL OF RIGHTS

I have the right to take care of myself.
This is not an act of selfishness. It will give me the ability to take better care of my loved one.
I have the right to seek help from others even though my loved one may object. I know the limits of my own endurance and strength.
I have the right to maintain parts of my own life that do not include the person I care for just as I would if he or she were healthy. I know that I do everything that I reasonably can do for this person. I have the right to do some things for myself.
I have the right to get angry, be depressed and express difficult feelings once in a while.
I have the right to reject any attempt by my loved one to make me do things out of guilt or anger.
I have the right to get consideration, affection, forgiveness, and acceptance for what I do for my loved one, as I offer these in return.
I have the right to take pride in what I am doing. And I have the right to applaud the courage it has taken to meet the needs of my loved one.
I have the right to protect my individuality. I also have the right to a life that will sustain me in times when my loved one no longer needs my fulltime help.



INCREASING LIMITATIONS

Functionally, I have certainly slipped. I pretty much had to give up cooking and find new ways to avoid having to get up from my wheelchair which I am still able to do, but it costs me too much precious energy and I have to budget that. I can still transfer to my stairlift downstairs by holding on to the railing but took the advice of an occupational therapist and now use the ULTRA SLICK TRANSFER BOARD to make this transfer on top of the stairs to my other power chair. The therapist observing me literally shuddered while observing the dangerous gymnastics and contortions I have to go through doing these transfers on my own, trying to hold on to my precious independence just a little longer; especially noting the hyperextension of my knees. This has boiled down to simply being able to take care of my own personal needs, getting showered and dressed on my own.

My left arm has weakened to the point that I have to lean on something to hold up my hairdryer or to hold the hand-held shower wand over my head. If I lie on my back I cannot raise my left arm straight up. Laws of gravity must be at work here, since I can still raise this arm up from a sitting or standing position, but certainly not for very long. Being right handed myself, this weakness does not truly bother me too much; it is more of a nuisance. But knowing that eventually my right arm will follow the same fate and interfere with my precious independence is somewhat disconcerting. However, I will cross that bridge when we get there.

I can still fix my own breakfast and lunch but Bill has taken over making supper, doing laundry and shopping unless I feel up to going out with him. Housecleaning is done biweekly with outside help, so at least he is not burdened with that.

With the ongoing swallowing issues and occasional choking episodes it takes me an inordinate amount of time in the morning to get ready for the day. I also still do my daily Chi Massager routine in the morning to help keep the lymphedema in my ankles and feet in check. On the two days that I go to water therapy I have to get up latest by 6AM in order to be ready to leave my home at 9:30AM. When I get home from that I am thoroughly exhausted and will not plan for anything else for the rest of those days. On "good" days I may do a little picking up here and there in the house, may load or empty the dishwasher, try to put my desk in order or use the computer a bit. Our stove is located in such a way that I can turn on one burner without having to get up from the power chair. But I have to be very careful when pouring hot water to make myself a cup of tea. Doing this from a sitting position will tax my weakened arms and hands more and certainly requires my utmost attention.

Tendon Transfer Surgery

In last year's update I had mentioned the tendon transfer surgery as a possible option to regain some hand function. I am disappointed to have to report here, that in my case; the progression of IBM has advanced to the point that I have no extensor function left in my left hand. Because of this, I am no longer a candidate for this surgery. My right hand may have still had the option for the surgery but knowing that eventually I would lose extensor function there, too, I felt it would not be worth my while to go through with this operation in my case. Yes, this was a disappointment for me, but I also realized that my limited mobility at this point would have made the surgery a tremendous ordeal.


Surprise Storm March 2013
A rough winter with many storms, but looking for the beauty in it all.


LOOKING AHEAD

I usually try to avoid looking to the future, but I am realistic. With the relentless, albeit slow progression of IBM, I try to be proactive and prepared for possible future needs. Having decided that we would stay in our two story home, we had to confront having the full bath upstairs renovated which meant having a contractor remove our built in bathtub and replace it with a tiled, curb free, roll-in shower, as well as putting tiles on the remainder of the bathroom floor. We also had the vanity base removed to give me better access to the sink with the wheelchair. The original door which opened into the bathroom was removed to create a wider entrance for the power wheelchair and was replaced with a sliding door.

In retrospect, having gone through with this major renovation in January, I wish we had considered this step a few years earlier when I was still able to take a few steps with my walker or rollator. This renovation turned out to be more stressful than anticipated for me. It meant that during the course of the work (two weeks) the full bath upstairs was off limits to us, and I had only the half bath on the first floor for my use. Bill had the use of a second bath in the basement, but this was not accessible for me. All this meant that during the duration of the work I would sleep in a guest bed that had been moved into our living room so I would be able to use the bathroom on that floor at night.

Any deviation from my normal routine presents new obstacles I must overcome. The top mattress from the guest bed was too soft, meaning I could manage only with difficulty to raise myself out of it for a transfer to the wheelchair, and then there was barely enough space to place the walker that I used for help with this transferring. We did switch the top mattress with a somewhat harder one from a different bed. This helped, but the height of the bed was lower than our king-size bed that I am used to. Somehow I muddled through those days but relished the days of going to water therapy where I could shower and be immersed in warm water.

Then, two days before the bathroom project was finished, an unexpected disaster hit. My power chair broke down and stopped running. Being an item on loan from the local MDA loan closet, I had to use their services to have the power chair looked at and hopefully get it repaired. The break down happened on a Thursday, and although I had placed a call to MDA right away that day, it took until Monday for a technician to come to the house and give me the bad news that the controller unit was broken. I could no longer face another day with being totally dependent on my dear husband to push me around in the power chair manually (each time having to set the chair in neutral. Considering we have wall to wall carpeting in our home this was doable but rather hard work. Each time I wanted to get up from the chair, Bill had to switch the levers from neutral to power to keep it from moving. This time will stay in my memory as a 5-day nightmare to say the least. It was perhaps a rehearsal of what I may have to face in the future, but it totally derailed me.

My Dearly Departed Chair
Me, Bill, and the original power chair before it broke down.


Once we knew that the chair could not be fixed, Bill made some frantic calls to assorted Medical Supply stores in the area to find a power chair that could be rented. After the tenth call, he lucked out with a store in Cambridge that had a model for rent at $125 per week and they were able to deliver it to our home on that same day. What a relief to be able to move around independently again! In the following days, I made a few more calls to MDA to see if they could not locate another power chair from their loan closet for me. By the end of the week they came through with an Invacare model that had more options than my basic one had before. However, the footplate was oversized and so stiff and heavy that with my diminished hand strength I could not move it up or down. While the technician was still at our home he did adjust it for me and left.

This should have been the end of my tale, but the saga continued. I found out very quickly that this chair was probably custom ordered for a person of much bigger height and weight than myself, and I simply did not find it comfortable to sit in it for any length of time. I needed a separate lumbar support cushion and even with that and the tilt option in use I could not get into a comfortable position; after a few hours I ached all over. Another obstacle I discovered was that because of the huge size of the foot plate, I needed to lift it up each time I wanted to make the turn from the somewhat narrow hallway into our bathroom, rather annoying.

But the real problem surfaced when Bill and I went shopping. Coming down our porch lift I heard something scratch when rolling down the ramp and then I got stuck at the base. I could not get the chair to move backwards or forward. Bill had to literally hoist the chair with me in it away from the ramp so it was on even ground then it would move again. Nevertheless we decided to go for our errands. I made it up the ramp into our car, but again was aware that something was scraping underneath. Coming down the ramp from our van I again got stuck at the base. To say the least, this was unnerving me as Bill again had to lift the chair up to pull it forward. Looking at it closer, he saw that the post that fastened the footplate to the base of the chair was less than an inch off of the ground. No wonder the chair would get stuck on any slope!

Another call to MDA and when the tech came this time he stated that the position of that post could not be changed. To avoid the incidents of getting stuck, he recommended that I put the chair in the tilt/incline position to raise the footplate post enough off the ground to make it up and down any ramp. This may sound easy, but in the tilted position I felt extremely unsafe having to operate the controller as I did not have full vision of the ramp. Normally I would not consider myself an anxious person, but I actually developed panic attacks knowing we had to leave the house for appointments.

At this point, I had had enough. I was very much aware that the MDA contact person had tried very hard and had to jump through hoops to get me this chair, but the model was just not working out for me. This experience had totally robbed me of my confidence.

I was not willing to go back to renting another power chair again but instead looked into Craig's List and actually found a second hand JET 3 Ultra for sale in a nearby town. This was the same model that I had used for the last six years, and I knew I could operate it in my sleep! We bought it on the spot after seeing it for ourselves. It was in working condition but had not been in normal use for over a year. Using it around the house was fine; but I could tell the batteries were not strong enough for outings, especially considering we still had winter temperatures to deal with which put more of a drain on batteries. So we ended up having to replace the batteries. All in all this venture cost us a total of $800 out of pocket, but at least I had my sanity back!

The upheaval and excitement of the past weeks had taken its toll on my nerves, equilibrium, and overall health. I developed GI issues, had more throat and choking episodes, and trouble sleeping. I also had to be put on a RX for high blood pressure. My case was a model for the mind-body connection.

I also need to report in this chapter that initially when the bathroom renovations were finished, I found more hurdles for me to jump. For example; my transfer bench that used to sit in our tub securely with the two outer legs outside the tub, was now left in a free standing position. It would wobble, making its use unsafe for me. If I wanted to use the grab bars the way I had before, the bench needed to be stabilized enough to allow me get up from it safely. However, this could not be done in a permanent fashion because with the disease progression in the future, I will eventually need assistance with bathing and using the toilet. At that point, I'll have to be wheeled into the shower area with the help of a combination wheeled shower/commode chair. So, Bill had to assist me whenever I wanted to take a shower by holding the transfer bench steady. I also had trouble with the new plumbing. I could turn on the water with the lever handle, but my weakened handgrip was not able to turn it off completely when I was finished. I was dismayed to have become so dependent on Bill's help.

Luckily our son Mark is fairly clever with his hands and having a creative mind came up with a "Rube Goldberg" contraption using pieces of TREX composite deck board (this material is water resistant) to stabilize the transfer bench. It can all be easily removed when no longer needed.

Mark's Clever Solution for Stability
Mark's stabilizing device for the transfer bench.


For the faucet the solution was to find a piece of rubber tubing that would fit over the lever, elongating it and giving me the necessary leverage to turn off the faucet on my own.

Shower Handgrip Solution
Rubber tubing gives additional leverage.


It took me a couple of weeks to regain my confidence in taking a shower when I was on my own in the house, but am pleased to report that I now feel secure enough to manage on my own again once more. Mind you my cell phone is always with my wheel chair in case of an emergency. I am contemplating signing up for one of those medical alert systems.


MEDICARE

In the last week of November, I had an appointment at the Spaulding Rehab Hospital in Boston to be evaluated for a new power chair that would have options like reclining, tilting and raising the seat height; to be approved by Medicare. I came prepared to make my case for the special needs of someone with IBM but the therapist there seemed knowledgeable enough. Having a representative from ATG who will eventually supply the wheel chair I did not expect any problems for an approval by Medicare.

Little did I know how complicated this whole process can be. It is now April and I am still waiting for my new chair! Among other things, one of the hang ups has been that the diagnosis of IBM does not qualify me for a specific seat cushion the therapist had recommended for me. It needed to be documented that I am having pressure sores which luckily I have not had yet. What ever happened to all this talk about prevention in order to save money when it comes to our wonderful health care system? I understand that there have to be rules and regulations, since sadly enough there is so much abuse going on with our Medicare system, but this is an example of how the abusers hurt the ones that truly need and deserve these services.


FUNDRAISING

Welcome to Dagmar's Walk in the Park - 2012!
Welcome and Signup table for the 2012 Walk in the Park.


Now it is time to stop my ranting and raving and talk about more pleasant things. This past year the Slaven family joined forces and organized our own fundraiser "DAGMAR'S WALK IN THE PARK" which took place on September 22, 2012 and raised a total of $6,771 to benefit research for all forms of Myositis. With a couple of articles in the local papers, this fundraiser was well attended and we had the added benefit of also having Bob Goldberg, the executive director of TMA, joining us for this event.

Bob Goldberg, Executive Director of TMA visits 2012 Walk in the Park
So happy for all the support we had this year.


As in past years, our dear daughter-in-law Trish, took lots of pictures and later created a video that is featured on TMA's site. You can see the successful day we had by clicking on this Dagmar's Walk in the Park video link.

Mark and Trish Slaven at Dagmar's Walk in the Park - 2012
A rare photo of Trish, who is usually behind the camera, with my son Mark.


In the past few years, these fundraisers for TMA have always been a great source of encouragement for me. To be supported and surrounded by so much kindness and compassion for the cause is extremely uplifting for me and I am so very grateful for everyone that helped make this walk the success it turned out to be.

Our next walk is planned for Saturday, September 21st - which coincides with Myositis Awareness Day. Details will be posted on this site as they become available.

My hope and wish is that a cure for MYOSITIS will be found and that hopefully more of my readers and/or their families feel nudged into using their talents to create more awareness for this rare disease.

Wings of Hope at 2012 Walk in the Park
Wings of Hope table at the 2012 Walk in the Park.


I am closing with the following quote:

Whatever you can do or dream you can, begin it.
Boldnesss has genius, power and magic in it.

Johann Wolfgang von Goethe


Dagmar, April 2013



In Memoriam

I am sad to report that in the last twelve months we lost a few more friends, may they rest in peace:

Matt Sullivan, Massachusetts
Dolly Leach, Ohio
Tony D'Arpino, Massachusetts
Giancarlo Vaia, Italy
Suzy Davis, Oklahoma
Brad Bent, Colorado
Doris Norris, Mississippi

Gone but never forgotten.



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MY STORY

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