As you have read in the past three columns, I am dealing with a number of health concerns. The only one that is considered terminal is the ‘dementia.’ It can turn into Alzheimer’s, which inevitably requires 24/7 care and ends up as terminal Alzheimer’s. There is, at present, no drug solution for Alzheimer’s. If I go that way, the end will come, whenever. With my wife’s assistance we now share control of my dementia. That means that it doesn’t seem to be progressing. My “Seven Pillars for Good Health” seems to be working at least to date. DM (autoimmune) is a different story.
Home care continues at home for wounds due to the prednisone drugs. Leah, my caregiver and my chauffeur, continues care for me for cancer, oncology, swallowing tests from the speech pathologist and surgery from the surgeon. Caregiver duties never seem to end.
Thank goodness for Leah.
Swallowing became difficult in May of last year. My PCD (personal care doctor) was not available and other medical doctors, assistants and nurses could not help me. I had to quit golf last July – the pain in my throat was very bad. By early September my wife took me to the ER, where the doctor prescribed prednisone (a steroid). He thought it was an immunity disease, and, with the “Seven Pillars for Good Health,” I will probably die of old age.
These Seven Pillars are split into “body” and “mind.” For the body, they are lifestyle, diet and exercise. For the body, they are awareness, connection, insight and purpose.
My book, My Voyage with Dementia (page 88), does discuss my ‘Mind’ Pillars. Your local Alzheimer’s Society has a copy of this book for free. I have tried a few of the well-advertised solutions (non-prescription) and they do not work.
In October, my PCD returned to active duty in our family health centre. She analysed my problem and got me a proper referral in a rheumatic clinic. It took a 14-hour triage for the hospital to accept me. I was accepted and my wife left for home at 4 a.m., exhausted. I found out that I had Dermatomyositis (DM, an autoimmune disease). The triggers for the DM were found to be melanomas, which were surgically removed. They could be the death of me but my oncologist is keeping a careful eye on me and using strong drugs, as necessary, to kill off the melanomas, unreachable by surgery.
Through a melanoma cancer specialist, I get a CT scan every 3-4 months to look for any recurring melanomas. And, through my rheumatologist, I now get five hours of infusions of IVIg antibodies monthly in order to fend off the DM. The infusions are given over two days per month in London, 2.5 hours per infusion. Leah continues to drive.
Crushing the pills and hooking up my stomach feed occurred four times every day. This took place until the end of April, when I passed the speech pathologist’s tests on swallowing. The stomach tube came out, with difficulty because the doctor left a piece of metal where the tube went into my stomach. My wife is great in keeping me on my pills that should be taken. She hopes that the frequent trips to doctors in London will be over soon.
While I think that I am gaining on the DM, I don’t feel that I am gaining on my dementia. As a matter of fact, my ability to recall ‘words’ that I regularly use in my everyday conversations, words that I use often, now disappear off the edge of my tongue. This is a frequent problem, but the following are other cognitive issues Leah notices with me:
– difficulty developing and following a plan or working with numbers and difficulty concentrating;
– losing track of seasons and the passage of time including the day of the week; and
– misplacing items, especially putting various items in inappropriate places and not being able to find them.
Most everything that I used to do on my own, I now depend on my wife. This is quite hard on her but, unfortunately, necessary. I do go out for walks on my own, but to date I have not strayed out of familiar territory. I think that my wife keeps her eyes on me looking for possible areas of cognitive decline.
There are a few other warning signals that can be a warning as signs for dementia;
– retinal accumulation of beta-amyloid in the eye can indicate Alzheimer’s disease;
– genetics, education, age, hypertension, etc. plus others are being analysed to discover Alzheimer’s; and
– blood sugar is now being analyzed – I’m sure that Leah will be on this soon.
Leah and I both hope that I will soon get back to the ‘old’ me, and soon. Time will tell. Leah is working on it.
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Bob Murray is retired from the graphic communication (printing) industry and has been living in Seaforth and was diagnosed with Dementia in 2013 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.
