I started writing these with columns, entitled My Voyage with Dementia, back in 2017. I have written one every other week for the last five years. I would like to say that dementia has changed from a “terminal” disease to a “treatable disease,” but that is not the case. As a matter of fact, it hasn’t changed and it has not improved. Dementia cases are rising in Canada. If dementia progresses to Alzheimer’s, it is terminal. We need to change that statistic.
I was diagnosed with a brain disorder (dementia) in November 2017. My disorder is referred to as FTD and, since early January 2020, is called mild cognitive impairment (MCI) due to Alzheimer’s disease (AD). I now also have an autoimmune disease called dermatomyositis (DM), where my immune system is attacking my whole body. This produces hives, swellings, rashes, muscle, weaknesses, etc.
Very uncomfortable.
My trigger is probably some foods.
Is the DM connected to the MCI due to AD? I think so, but there is no evidence that this is the case. Both MCI and DM appear to be increasing in Canada.
Something needs to be done.
The scientists want a “miracle” drug for dementia like the COVID-19 vaccine was for the coronavirus. Alzheimer’s Canada is working hard by sponsoring research but there are no “miracles” to date, with over 20 years of effort. Maybe we should try a vaccine or a hormone to solve my disorders (dementia)?
There are two drugs that have been proposed to solve the progression of MCI in the United States. One has passed a clinical trial and the other has been proposed to the FDA. Does this mean that we have a solution to MCI?
Health Canada has not approved either of these drugs.
Dr. Sharon Cohen, behavioral neurologist in Toronto, has forecast that it would take almost 15 years to get any drug through the Canadian approvals process. We are careful, but the statistics hurt. In the last year, the United States has had emergency approval of a drug injection for those with dementia (MCI).
The big pharmaceutical companies sure hope we approve these drugs. As an example: the six largest pharmaceutical companies have found and produced a solution (on an emergency basis) for COVID-19. They have and are making a fortune with this product. Another example: they invented insulin for diabetes and they have been making a fortune from its sale ever since. Recently the United States government put a cap of $30 on each insulin unit. A major drop in price.
When I was 12 years old (some 70 years ago) I developed a case of hives. There were swellings in eyes, lips and throughout the body. The doctors said that the problem was an allergy. I was tested (elimination diet) and they found out that I was allergic to onions, eggs, nuts, milk, chocolate and artificial food flavours and colouring.
That morning our local doctor came to the house and gave some adrenaline to my father and said, “When your son has feelings that hives are coming, then give him an injection of adrenaline.”
My father gave me a shot and it worked.
Over the next three hours most of the hives disappeared. By the time I left home for university, five years later, I was almost hive free. I had almost learned (a positive mind) to have my adrenal glands send out adrenaline into my bloodstream without an injection. There were still some hives but not many. My brain had learned. Lately, these hives, have come back. Apparently, the trigger was melanomas and they have been removed. Adrenaline was needed to fend off the hives.
After removing the melanomas (the trigger to DM), I think that my body needed adrenaline (epinephrine) – a natural hormone produced by our adrenal glands into our bloodstream for our heart and our brain to assist us in combatting stressful situations. My problem is I cannot get adrenaline remotely. They say it is too hard on my heart. Again, should I depend on my adrenal gland to provide adrenaline naturally?
Should we try a vaccine or a hormone to solve my problem?
Canada has not given approval to these drugs. If you are a regular reader of this column, you will know that I do not approve of Canada’s “do nothing” position. Well, I have changed my mind. I hate changing my mind. It is against my basics. I now approve of Canada’s careful non-approval. Health Canada takes the “safe but sure” approach and I approve.
From my doctors I now get steroid pills – five pills per day (with side effects) and IVIg infusion for five hours every month. Is it working? I think so but it is very slow. I still have swellings, etc. and a lack of balance. Right now, I could not play golf.
***
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. Follow him on his blog entitled Voyage with Dementia – https://myvoyage553264702.wordpress.com.
