Yes, I know, there is no “tunnel” in my voyage with dementia but I believe that I have been living under a cloud for the last five months. Somewhat reluctantly, I am back on prednisone as of Nov. 11. I say reluctantly because I have a confirmed appointment with a rheumatologist that same day – the date this newspaper is published. It has taken two weeks to get an appointment with this specialist.
In 2013, when I was first diagnosed with a dementia, they said that my life expectancy could be six to nine years or, with luck, 20 years. I’m working on the 20-year scenario. As an aside: they now call dementia a neurodegenerative disease (ND) and it includes mild cognitive impairment (MCI) through all the dementias to Alzheimer’s disease. Lots of good work is being done on ND – things are looking up.
Fortunately, my personal care doctor (PCD) met with me for the first time in four months on Oct. 18. She sent me to give blood and she personally cut out a small piece of skin to send out for analysis. It took some time to get the results.
The blood tests showed two markers which could indicate an autoimmune disorder (lupus). The skin sample showed an infection that needs treatment. Solutions are coming soon.
Regarding the blood tests; by researching through the internet, I think that I have immune cells going out and attacking my skin and producing red rashes, swellings and itching all over the major muscles in my body. Apparently, the medical word for this is lupus and it is quite common. There is no cure but it is treatable
As for the swelling under the skin, this can be called systemic lupus. The immune cells go out and attack my insides (lungs, mouth, kidneys, etc.) and this is what causes my shortness of breath, my muscle weakness, and my fatigue.
Thank goodness I have an appointment with a rheumatologist as you are reading this. My Remembrance Day will not be forgotten. Self diagnosis is not for the faint of heart. For me, it is somewhat reassuring to get an idea of what is happening to me. Combining all of this with my dementia, it is quite a challenge. My brain is telling my body – my immune system – to do whatever it is supposed to do to correct the lupus but the brain just won’t tell the immune system to stop. On Nov. 11 the rheumatologist will have an answer, I’m sure. I hope the doctor has a little talk with my brain.
The bottom line of all this that I am living with two disorders – ND and lupus – that have no cures but need to be tolerated and I need to learn to live with them.
It turns out that my son has a similar skin disorder. We figure that it runs in the family. He has been going to a dermatologist for the last few months and feels that his disorder is lessening.
All of us are products of our parents in many ways. My father was diagnosed as a Type 1 diabetic at the age of about 37 (I was eight at the time). He was told that he had a life expectancy of 20 to 25 years. He had a young family, with two kids and was growing his family business quite successfully with his father. He decided to learn everything he could about diabetes to help assure that he made his 25 years. His father had a stroke in another five years and my Dad continued on, building Canada’s largest printing business before retiring to become a full-time husband and volunteer. He did all that and sold his business in the 25th year and retired. His kids were grown and gone successfully. I feel that by achieving his objectives he lived another 25 years before dying of a stroke at 89 years of age. He had a great life right to the end. I anticipate that I will be able to do the same.
My father is still an inspiration for me. It would be so easy for me to just give up and fade away. I have had 82 great years and, genetically, I should be able to have at least 12 more. Hopefully, with a little luck and good management I can continue burning the light in the tunnel and continue my voyage with life.
My “Voyage with Dementia” (or ND as it is now called) 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.
