It’s been a busy two weeks. Currently, I do not drive so most of my appointments require my wife to drive. Since most of my specialists are in London, which is at least an hour drive, she drives a lot and gets exhausted by driving. A superb caregiver!
Four weeks ago, I had a CT scan in Stratford. We tried ‘Easy Drive’ to take me to Stratford and back and it worked and my wife was able to use the car for her appointment. The CT scan is to find out whether or not I have any remaining melanoma cancer in my lungs. In the last scan I had two spots on my lungs. I go to my oncologist in London this Tuesday for a cancer review.
Every month, for two days, I go to the University Hospital in London for IVIG infusions of one-and one-half hours each. These infusions are intended to boost my blood for the DM. I gather that they are somewhat experimental since my rheumatologist is not able to give me details of its effectiveness. But, I do feel better, a few weeks after the last after the infusion.
Two weeks ago, I had an appointment with my primary care doctor (PCD) in Seaforth (short drive). She is terrific and she reviewed all of my ailments with my wife and I. She gave me a referral to a good psychologist in a neighbouring town to facilitate my understanding of my health issues. I may not be able to continue with him because apparently there is a rule that my PCD can only refer within her locality. Doesn’t sound good for me. Crazy medical system we have!
Big announcement from the Alzheimer’s Society of Canada (ASC). The Landmark Study Report #1 has been presented. My copy is 58 pages long and there are two more studies to come. This is important because it ‘navigates the path forward for Dementia in Canada.’ I gave an interview on CTV National News last month. I only had 10 minutes to prepare so I was not really happy about my interview. Better than nothing, I guess? This would be my fourth interview – I should have this interview stuff down by now.
I have also been asked to be on a steering committee for rural neighbours, like ours. A ‘dementia-inclusive community’ is one where people living with dementia can participate and be included as full community members in their community. People with dementia often live with cognitive, intellectual, sensory and physical disabilities. This gives us a spotlight on our concerns. There will be three steering teams – rural, urban and rural neighbourhoods. Our second Zoom get together is on Nov. 7. It is great that dementia is getting the non-medical attention that it needs. Unfortunately, a medical solution is still missing.
Over the last six months I have had a number falls (poor balance). Nothing has been broken but I have had a number of bad sores, which do bleed profusely (thin skin). Twice a week a nurse comes into our home to repair the sores. Fortunately, the falls are reducing and sores are stopping their bleeding. I hope that the end is near. Drives my wife crazy with the bleeding – she patches when the nurse isn’t here.
Tomorrow starts another period with the nurse arriving in the morning. I will be spending quite a bit of time this week trying to finish my book My Voyage with Dementia, which is about 80 per cent completed – over 170 pages all about my experiences with dementia. It is intended to give just one person’s version and frustrations with dementia.
And life goes on and my voyage continues… with some difficulties.
***
Bob Murray is retired from the graphic communications (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.
