In a recent column, I explained what I am doing to slow down my progress from Mild Cognitive Impairment (MCI) to a worse dementia. I am trying to follow my own recommendations but adhering to my “Seven Pillars to a Good Life” is easier said than done. Apparently, my disease is called a Neurodegenerative Disease (NDD).
I have a fitness watch that allows me to keep track of my number of steps per day, my pulse, resting and active. By
synching with my iPad, I can keep track of my sleep by category – total hours: awake (while still in bed), light sleep, REM sleep and deep sleep. The best sleep is deep sleep but I only average eight per cent of my total sleep as deep sleep. Not good.
My previous columns (all 103) go through my ‘Voyage with Dementia’ and the Seven Pillars. I also have a glucometer for blood sugar testing and a small ECG for the heart. Unfortunately, for me, I seldom use either of these devices. Just lazy.
I am a volunteer and keep on top of the ‘dementia’ world by volunteering for clinical trials and research studies, if I am qualified. I am about to begin a research study sponsored by the ONDRI (Ontario Neurodegenerative Research Initiative). and the Ontario Brain Institute (OBI).
I am qualified because I have this neurodegenerative disease. My disease is MCI (Dementia/Alzheimer’s Disease). Others who may qualify are Parkinson’s, FTD (Frontotemporal Dementia) and people who are post-stroke. Healthy adults are also included in this study in order to have a comparison group.
This study is called Health in Aging (more at www.ondri.ca/handds). By the time you read this, I will be equipped with a wrist sensor, an ankle sensor and a chest sensor for a 10-day period. I will also have to journal all my activities. All of this is for 10 days, 24 hours per day. I will also have given blood that will be sent a lab in London. This study will also be done from my home with the assistance of Zoom. Exciting on one hand but terrifying on the other.
That is a lot of information collected about me. Fortunately, it is very private, with Sunnybrook Research Ethics Board (REB) approval. No fear about my information getting out, unless I wish to share.
So, why am I doing this when I have already set up my own procedures to evaluate my life with dementia?
First: Is what I am doing the best for me? This study will find out.
Second: There is lot of dis-information out there. Who is right or who is wrong?
Third: So far, everything done by the ONDRI is very professional – they have my confidence.
Fourth: I will have a full analysis of ‘me’ in two months. For someone with a ‘need to know’ this is wonderful.
I consider my involvement in this study as a win-win situation. A great data bank of information will be gathered in order to guide future NDD activities. I will also know pretty well where my particular NDD or dementia stands.
FYI: I have a number of health issues that I am struggling with. These are: osteoarthritis, an enlarged prostate, a bad right knee, tingling or buzzing in my skull and thighs, recurring cancers that are currently dormant and sores in my lips and mouth. This NDD study may help to flush out areas that will help me to address these concerns. Of course, my greatest difficulty is that I am old – 82. But I don’t feel old so I need to get into my head that my heritage seems to indicate a long life; I need to be positive.
The diagnosis, in 2013 of dementia, as an incurable disease, has been difficult to live with. The new drug, Aduhelm, seems to be perfect to give me a few more years but it is still working through the bureaucracy to get approval in Canada.
I am aware of a major study initiated by Health Canada to move our world into the prevention of dementia in Canada. I understand that this study will be issued this fall. I hope it has a path detailed to prevent the progression to dementia for people with dementia signs at a young age (like at 50 years of age). This ONDRI study may help in this area as well. Stay tuned. My comments will follow in successive weeks as the study proceeds.
And, “My Voyage with Dementia” continues…
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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
