I try to remember back to December, 2017. It was on this year that I had a SPECT brain scan and was diagnosed by an “increased perfusion seen in the right temporal lobe and basal ganglia.” I interpreted this diagnosis as dementia and went on with my life and joined the local Alzheimer’s Society.
The perfusion pattern of the scan didn’t suggest Alzheimer’s disease – that was good. From this Alz.group, I learned about the disease. At some point they came up with the term MCI (Mild Cognitive Impairment) to fit between no dementia or a full dementia.
I seemed to fit into the (MCI) as a neurocognitive disorder which involves cognitive impairments beyond those expected based on an individual’s age and education but which are not significant enough to interfere with normal activities of daily living. MCI may occur as a transitional stage between normal aging and full dementia, especially Alzheimer’s disease.” I was satisfied with this definition and my life continued.
In the year 2021, I took further testing in a MCI clinical trial in Toronto. It turned out that I had one APOE gene and with a retinal (eye) scan and a spinal tap (removal of spinal fluid) my dementia was confirmed. It didn’t really bother me so life moved on without difficulty. I had time to spend more time on myself (self care) and on getting my dementia under control.
I had lived most of my life, as one would suspect, who lives in a house dominated by Type One Diabetic disease – father and daughter later in life. I was disappointed as to how little I learned about my health.
I approached the Diabetes Society in my town but without a doctor’s referral they would not deal with me. The development of severe allergies when I was 12 years old caused me to increase my health knowledge. The first action that I took was to tighten up on the foods that I was eating since they caused my allergies.
As my life developed in Seaforth, I started to pay attention to what I call “self-care” and who can provide health services when needed. I had a primary care family care doctor when I moved to Seaforth from the Toronto area. Unfortunately, I lived in the ‘rurals’, but there were few specialists around. The small cities of London and Kitchener Waterloo, an hour plus drive away, were the source of a few health specialists.
I tried to look after myself but it was difficult. In the early 1970s, my hearing impairment forced me to get a cochlear implant from Sunnybrook Hospital in Toronto. I went to a Toronto specialist for neurological services. It was there that I found that I had the APOE4 gene – foretelling a terminal disease called Alzheimer’s. They also did tests for cognitive capabilities.
My primary care doctor was very busy but had adequate time for me. My wife had developed a blood cancer and was well looked after by a specialist in Kitchener as I continued with my neurologist in Toronto.
It seems that my health reports were secret even though they said I would be able to have them. Apparently, everything was sent to my primary care doctor where they lived on. Eventually I paid $30 to $60 to get copies.
We have a small hospital in Seaforth (where I live) with the basics including an Emergency department, but no specialists that I am aware of. In the northern town of Teeswater, I read that they have raised $2.6 million for a Community Medical Centre in Teeswater – included is a family doctor, nurse practitioner, pharmacist, physiotherapist and others. It was perfect to serve that small community. Unfortunately, my health reports in Seaforth were not easily available to me. In the USA they posted my reports and more on the web and gave me the password to read my file. Open communications was great.
In approximately March of 2021, I noticed that I had troubles swallowing and an autoimmune disease was suspected. It worsened as time went on and by the summer it was quite a problem. My wife took me to our emergency room. Over the summer, I went to a nurse, an RN and a couple of family doctors but there was no help in Seaforth.
Finally, my wife (caregiver) took me to Emergency again where they started me on prednisone. Unfortunately, I need to go to London hospitals to get medical specialists for my autoimmune disease. They put me in hospital for four weeks of tests. Finally, the hospital found melanomas which turned out to be a trigger for dermatomyositis (DM).
The melanomas were removed but the DM continued. I continue to be treated for the DM which, now, is in its sixteenth month. I wake up in the morning with the shakes and stiffness. I get a drug infusion for twodays (2.5 – hours per day) each month. Every other month I am due to see my specialist – a rheumatologist.
Every third month I get a CT scan and the following month I meet with the oncologist.
Last month there were no signs of melanomas – thank goodness. I had lots of attention but no relief from my maladies. I am concentrating on my self-care – I have the time and the motivation. I find the system frustrating – I never know what is going on and I seldom see my doctors.
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Bob Murray is retired from the graphic communication (printing) industry and was diagnosed with dementia in 2017 He 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: “My Voyage with Dementia” https://myvoyage553264702.wordpress.com.
