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We celebrated my 74th birthday recently. Looking back, I find it easy to recognize how very blessed I have been from the start. I am now, and have always been, surrounded by a big and loving family. Though I was born the middle child of five in Germany during the horrors of World War II, my family was lucky to not get bombed out. Food was scarce and severely rationed, but I do not remember ever experiencing hunger. However, I do know that many of my friends were not as fortunate as our family.
Like many others, my life has ups and downs, but somehow I always seem to find the strength inside of me to persevere and keep going, no matter what. My ability to have a positive attitude is a gift too; one I am only now becoming aware off. My family is learning to accept bits of wisdom from "this wise old crone" as I like to call myself these days! Yes, getting old has its own benefits, you are no longer worried about what others may think of you, and you have earned the right to be free and to act "quirky" whenever you feel like it.
Now, getting back to reporting on my uninvited guest, Inclusion Body Myositis. Measured by the IBM/FRS scale (Inclusion Body Myositis Functional Rating Scale) I have dropped down from a 17, as last measured in the fall of 2013, to a low of 9 now. This is mostly due to the fact that I can no longer stand or transfer on my own. Also my left arm and hand have gotten so much weaker. The following is a description of my daily routines.
My living quarters have moved downstairs. Our living room, after some rearranging, is now graced by a fully automatic hospital bed, an Easy Pivot Lift EP-85 (by Rand Scott in Colorado), a rolling shower commode chair (Aquatech by Clark), plus my Permobil C300 wheel chair.
I usually wake up around 6 a.m. and need Bill's assistance to get out of bed. He uses the lift to transfer me to the rolling commode chair which then gets wheeled into the bathroom. Once finished, another transfer to get back into bed and I will then let the Chi Massager Machine do its work for my ankles and legs for the next 15 minutes. I did mention the use and benefit of this machine in my 2012 update. I do need Bill's help in setting all this up for me and placing my ankles on the special ankle rests. This is followed by a few minutes of rest and some stretching exercises to retain as much flexibility as possible.
Now another transfer back to my wheel chair. Once seated, I get the sense of having regained some control over my day. With a little help, I then have my breakfast. I consider myself fortunate that I am still able to feed myself, but with my ongoing swallowing problems eating usually takes a good hour. Afterwards, I need to use the bathroom again and all the transfers are repeated. These days I no longer bother with getting dressed, unless I have a doctor's appointment. It is just too much bother. I do need to wear warm cardigans, leg warmers, and a lap blanket to keep me warm. I also use at least two smaller pillows (filled with rice) that have been warmed in the microwave. They are easily portable so they work better than a heating pad.
You can imagine that with all my transfer needs my "free" time is shrinking, leaving smaller windows of opportunity to do what is still possible: making some phone calls, using my iPad with the help of a stylus (my finger touch is no longer sufficient), checking e-mails, and keeping up to date on TMA bulletin boards or Facebook pages. Facebook now has a multitude of myositis-related group pages, but I have decided to follow only the open group that deals with IBM. This explosion of postings on Facebook with its promise of instant response has sadly lured many folks away from the TMA bulletin board and the traffic of postings has markedly slowed down lately. As for me, TMA will continue to have my loyal support.
By 11:30 or at latest by noon, I will have my lunch; this is usually a sandwich. 1-3 p.m. is nap time in my bed. Since I can only sleep on my left side, napping in my Permobil wheel chair is not possible which means more transfers again. After naptime, I have another window of approximately 2 hours before 5:30 PM which is supper time. Depending on the consistency of the food and my ongoing swallowing problems, it may take me an hour to an hour and a half to finish. This means multiple reheatings in the microwave and many sips of liquid in between. I prefer to eat all by myself to avoid distractions that could lead to the feared choking episodes. It IS hard work, but I am grateful to still be able to eat and not lose too much weight. Bill is my main cook, but to give him a break we have ordered meals on wheels twice a week.
After supper I have another short window to read, listen to soothing music, or watch the occasional movie from Netflix with Bill. Watching TV in general has lost its attraction for me, and I have stopped following the current news for at least 2 years. There is just too much negative reporting in our media with murder, mayhem, and natural disasters seeming to always have top billing. I purposely stay away from such exposure to keep my own positive mental balance. At about 9 p.m. I am thoroughly exhausted from my day and do appreciate my sleep.
You may recall that we live in a house with two stories. Using our Acorn stairlift to get me upstairs for showers now requires multiple transfers, not only to get me to the bottom of the stairlift and into that seat, but again at the top. I use a transfer board (Ultra Slick model) to wiggle, with assistance, to my upstairs wheelchair (Pride Jet-3) which has been parked in the hallway. From there I will then drive into our former guest room that now has a hospital bed and the old Easy Pivot lift that I had obtained from the MDA loan closet the year before. After another transfer in the guest room to a second rolling shower commode chair, I can finally get wheeled into the bathroom for a welcome shower. When I have been dried off, we roll back into the guest room. I then get transferred into the semi-automatic hospital bed. (Medicare finally did approve this after a few months of haggling by the VNA, needing my doctor's prescription, and official documentation of my need for it.) The extra hospital bed we have downstairs was donated to us by kind friends and was ready for me when I was released from the rehab facility. An answer to much prayer!
Once on the upstairs bed, my aide will do some range of motion exercises with me for my legs. She then has to put me into my compression knee highs and a pair of light weight knit slacks. This last step is a must for using the transfer board safely. Another transfer to my wheel chair and the same procedure in reverse gets me back downstairs and finally seated into my wheel chair.
In case you are wondering why I chose an Easy Pivot lift instead of a ceiling lift system, the architecture of our home would not allow us the ceiling option. I am aware that Mike Shirk from California has written about the ceiling lift system favorably on his website, LifeDisabled, and I therefore recommend for everyone with an IBM diagnosis to be highly educated about all the options available to you. It's important to find those that will work best for your own home or apartment.
Do keep in mind that using any kind of lift device, for example an Easy Pivot or Hoyer, will require sufficient space in which to operate them. I have to add here that my personal experience with a Hoyer lift during my stay in the rehab facility was not a good one and not sufficient for my personal needs. It took two aides to do the job properly and safely. This experience lead me to fight for the Easy Pivot lift which allows the patient transfer safely while requiring only one person to operate. Here, as in the past, I had to explain, educate, and advocate for myself by detailing the benefits of the Easy Pivot version of the lift to the occupational therapist (OT) who had never heard of it before. Medicare will only pay for the most cost effective lift, usually a Hoyer, and therefore the patient has to be willing to pay the difference in price to the DME provider. Again, you have to know your personal needs and be your own advocate!
If you are still reading at this point you can imagine that all this transfer business requires a lot of energy from me. This is also true for my caregivers. Bill plays the lead role here, but we do have aides coming in to help with my three weekly showers. They also will cover during times when Bill needs to be away from the house.
After my release from the rehab center last May, I had envisioned myself sleeping upstairs again; however, there were first a few months of going through VNA services, waiting for the much needed equipment, multiple evaluations by case workers, nurses and OT's, and more evaluations from other agencies and organizations.
After three months of repeating my story, explaining again and again what this rare disease Myositis and in particular Inclusion Body Myositis is all about, I started feeling like a broken record! I did not mind this because I do know too well how very little is known in our medical community about Myositis, and knowledge and awareness are the best keys to unlock the door to better understanding. We DO have to learn to be our own advocates!
We ended up with the South Shore Elder services and a special program available in Massachusetts that goes by the lovely name: Frail Elder Waiver. This program helps couples with one disabled spouse to stay in their home, versus sending him or her into a nursing home.
After going through this process and experiencing how many transfers were necessary to simply get me upstairs, I had to realize--much to my regret--that it would cost me far too much energy to achieve sleeping upstairs again. Reality is a tough teacher, but I am grateful that I can be showered at least three times a week in our remodeled roll-in shower.
A few more details should be mentioned here: When I am in my bed at night or at nap time, I do have a phone at the bedside and a call button (Radio Shack ringing bell device) to reach Bill wherever he may be. I also have a Life Alert call button. This is now the only jewelry I wear besides my wedding band. My nighties are special made hospital gowns (brushed satin material) that can be found online at E.T. Reavis & Son in Tennessee. These gowns, thanks to the material, allow me to still move and wiggle around a little bit when in bed, but it does require great effort on my part.
Bill as my main caregiver is my most precious resource. He absolutely DOES need time out for other things and interests. I am also very fortunate to have loving children who will come to help us, whatever the need may be at the time. I do have reason to be proud of my loving family support!
I decided to write all this down for you, the reader, in such detail to give you a realistic description of my daily routines. For some of you this may be hard to swallow and scary, but do keep in mind that Myositis has been overshadowing my life since 1989. This is MY journey and MY story. Not everyone with a diagnosis of Inclusion Body Myositis will experience the same or similar things during the course of their progression.
Closing on some positive notes, the ongoing study/trial by Novartis about BYM338 does sound promising, but is not conclusive yet at this point. I do hope there will be a treatment available in the future to cure IBM.
Also, in September 2014, we had the last of the fundraiser walks organized by the Slaven family. I am proud of what we have accomplished in raising funds and awareness for Myositis over the years. Dagmar's Walk in the Park 2014 raised a respectable amount of a just over $8,000. 75% of that will be used for general research, i.e. for all forms of Myositis, and the other 25% will help towards administrative purposes. My heartfelt thanks to everyone who made that possible. Your ongoing support of me is priceless!
Myositis Friends at our 2014 Walk
We had the added pleasure of having visitors from overseas. First my nephew and his fiancee came in May of 2014. Then my older brother came in September during the week of Myositis Awareness. As he was participating at our fundraiser walk, he could see firsthand how well I am supported by my family and the large number of friends I have over here in the U.S. To top it off, in February of this year my younger brother surprised us with being here to help celebrate my birthday. What a pleasure to hear him play guitar for us! There was so much for me to catch up during these visits. It was truly wonderful to see my relatives after so many years, and it gave us a chance to share our childhood memories and enjoy remembering shared experiences together.
Visitors from Overseas
Happiness isn't about getting what you want all the time, it's about loving what you have and being grateful for it.
Yes, I do count my blessings every day, and will continue to live by my motto "Carpe Diem".
In the last twelve months we lost a few more friends, may they rest in peace:
Eileen Greenstein, MA, December 2014
Richard Glasmann, Colorado, April 2015
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