Finally, 2021 is history. The expectations for 2022 are great with the pandemic fading into the past. Time to deal with the future.
This past year has been quite a test for me. I seem to be in control of my 2013 diagnosis of a dementia and, the ‘Seven Pillars of a Good Life’ that I followed since 2017 has kept my mild cognitive impairment (MCI) in check. The addition of the autoimmune disease called dermatomyositis (DM) was an unexpected complication. But the doctors have completed their discovery in the hospital and the trigger to the DM – a large melanoma cancer – has been removed. I am now home under the care of my wife.
Getting home was easy. My wife picked me up and we came to Seaforth. As soon as we came in our house I plopped myself in what would be my recovery chair. When I went to get up, I found that I was having difficulty doing so. While the doctors said that my muscles were in pretty good shape for being in a hospital bed the last month, the DM would not allow me to use them. The hospital made things easy for me but at home it was different. There are 46 muscles in my neck and I can’t use them to swallow. Going up steps was almost impossible. My balance was off so I used a walker to keep from falling down. Life at home was going to be difficult. And what was I going to do to fill my time – TV and reading?
So wife and I reverted to my hospital schedule at home. I would awake at 6 a.m., get up at 6:30 a.m., get dressed and go into the living room into my lounging chair. My wife would get up at about 7 a.m. and come in to connect my feeding tube and then go back to bed until about 9 a.m. Then she would feed me my medications and water. I would stay connected for about five hours. If I wanted to walk around (i.e. go to the bathroom), I would have to wheel the IV tower around with me – a pain in the you-know-where. Around 5 p.m. my wife would connect me for feeding for another five hours and by 10 p.m. I would be ‘free’ again and go to bed around 11 p.m., allowing me to get a good night’s sleep in my bed. This routine would be in effect until I was able to use my muscles again and I could eat and drink like an ordinary person.
The recovery period may last three months or more. I came home to be monitored by home care nurses in Seaforth. Now, my wife would take care of me while I recovered in my home. The care and feeding of me would continue as it had in the hospital. This is hard on my wife as I would be put on the IV food/nutrition feed and taken off twice per day. She would also have to crush my meds into fine powder to be able to put them through the IV into my stomach. In addition, I needed extra water into my stomach every six hours. She was very busy and I just sat there while she did all the work. There was no other way. As I write this column, we have had two weeks of personal recovery without any serious mistakes. I had noticed a very little improvement in strength but nothing to write home about. This recovery period would take a lot of patience, not one of my strengths. How was I going to fill in my time while this process was underway?
I decided to exercise for an hour each day. I did this before the DM hit me. Before going to the hospital, I tried a plank – knees to elbows for only five seconds. On returning home one month later, I got down on the floor and tried the same plank. I did 40 seconds on the floor but then I couldn’t stand up without help. I had elastic bands and used them for many of my exercises. I found that any type of exertion left me out of breath as result of DM. My program was to exercise my body while my diet and steroids (prednisone) were eliminating the DM. As the exercises got easier I felt the DM was lessening. This was going to be a difficult recovery! But I will persevere with the help of my wife and my doctors.
Needless to say, my research into brain health and dementia continues as does my columns.
Lots of reading will be done as I continue to research for my voyage with dementia and wait for the DM to lessen.
My five favourite books about dementia and health:
– The End of Alzheimer’s by Dale E. Bredeson, M.D.
– The Brain’s Way of Healing by Norman Doidge, M.D.
– Keep Sharp by Sanjay Gupta, M.D.
– –World War C by Sanjay Gupta, M.D.
– The Body by Bill Bryson.
I also pulled out one book about the late Ben Hogan – one of the greatest golfers in history – titled Ben Hogan’s Secret by Bob Thomas.
Stay tuned as my voyage continues with recovery in “My Voyage with Dementia” and dermatomyositis.
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Bob Murray is retired from the graphic communication (printing) industry and has been living in Seaforth since 2015. Murray was diagnosed with Dementia in 2013 and works hard to stop the progress of the disease to AD. He shares his experiences in his column entitled “My Voyage with Dementia.” Follow him on his blog entitled Voyage with Dementia – https://myvoyage553264702.wordpress.com.
