I was first admitted into the LHSC – University Hospital in London on Nov. 15, 2021. I went through 15 hours of triage before they decided that they could help me. I then spent a whole month in this hospital. In the third week they thought that the DM (Dermatomyositis) was triggered by cancer – melanomas. The decision was to remove the melanoma by surgery on Dec. 9, 2021. And, it was a beauty – 6.3 centimetres in diameter, considered very large in the melanoma world. A week later I was discharged to recover at home. I was being fed nutritional liquids directly into the stomach. This went on for a month. Not a good time in my life. But, amazingly enough, I was not hungry.
If you follow my columns, you have heard all of this before, but I wanted to tell you that this was only the beginning which really started with the dementia diagnosis in October 2013. I’m also telling you this today because tomorrow is my 83rd birthday. It could be a beautiful day, but the golf course opened last Friday and on my 83rd birthday I will not be playing golf. For most of my life I have either played golf, or could have played golf, on my birthday. It sounds rather petty but playing golf on my birthday is important to me. Strange things become important as I age.
Instead, I will do a few hours of gardening – only a few because my health is not strong enough to do much in my garden. Age is one thing, but my diseases are not being corrected as quickly as I had expected. Gardening is my second outdoors love. I grow a lot of veggies, especially in my Veggie Pod raised garden.
I have MCI (mild cognitive impairment). People living with MCI have problems with memory, language, thinking or judgement that are greater than the cognitive changes associated with normal aging. The problems experienced are considered mild – not as severe as the symptoms experienced by a person living with dementia. It has no cure but symptoms can be treated to slow down the progress to dementia (dementia is not a specific disease; it’s an overall term that describes a wide range of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person’s ability to perform everyday activities. Alzheimer’s disease is the most common type of dementia.) Unfortunately, Alzheimer’s is terminal. But I am a long way from being there – I hope.
Along with MCI I have plaques. Plaques consist of dense, mostly insoluble clumps in the spaces between the nerve cells in the brain tissue. The plaques are made up of beta-amyloid, which is a protein peptide or fragment that appears to have toxic effects on the function of the surrounding brain cells and tangles. Tangles are a hallmark characteristic of the brain tissue associated with Alzheimer’s disease. They involve the twisting of tau protein, threads of the nerve cells in the brain tissue. Like the plaques, there is no cure but treatments are possible.
On top of this I have an autoimmune disease (mine is called dermatomyositis, or DM for short). DM a is condition in which the body’s immune system mistakes its own healthy tissues as foreign and attacks them with auto antibodies. This DM is creating havoc with my body. I have the shakes, poor balance, bruising and small swellings all over. I take a steroid (prednisone) to cure the AD but it is moving slowly. My cognitive reserve (CR), which refers to how flexibly and efficiently the individual makes use of available brain resources, is not good which slows me down.
Good thing that I live in a dementia-friendly community (DFC) – a place where people living with dementia are understood, respected, and supported. It’s an environment where they will feel more confident in their abilities to contribute to community life, will be included in conversations, and have a choice and control over their day-to-day lives. This really is a blessing and makes life livable. Fortunately, I also have a great support medical team in Seaforth and in the hospital in London. This support team has a great person-centred approach (PCA) – where the person is placed at the centre of the service and treated as a person first. Remarkable to me.
I started out this column feeling sorry for myself, but, after re-reading what I have written, my spirits have risen a lot. When you have a number of health issues, like I have, it is easy to get down on yourself. I just need to count my blessings more often. Life is really pretty good. Now, I just have to get out on the golf course.
My Voyage with Dementia and other issues does continue. Stay tuned.
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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://myvoyage55326.wordpress.com.
