Illness and identity is a huge issue, not only for patients but also for docs. Medical trainees were admonished by their staff physicians for referring on rounds to “the lung cancer in room 12” or “the congestive heart failure in ER”, as opposed to the person with those problems. And medical sociologists in the last century wrote about “the sick role” where, for some patients, illness becomes identity. Finding the sweet spot between the extremes of denial and defeat is the challenge, but generally it’s harder to keep a secret than to share the truth. And other people, noticing symptoms, may be left to their own fantasies about what is actually going on. I watched one of my Cape Breton uncles cope with Parkinsonism over 25 years. He claimed it improved his golf game by slowing down his backswing - true to his character. We bring our unique trajectories and temperaments to the templates of disease, leading to the variety of illness experience. But you will always be, alliteratively, Philip first and foremost!
I've had an invisible disability since I was 10. Migraine, frequent and severe. Didn't mention it much, missed school and then work at times. Medication changed regularly from age 20 onwards, carried pain killers everywhere. Just part of life, no one else in the family had it.
Arthritis arrived around age 55, and this I expected. Both sides of the family had it. Only a few aches and pains, but at 74, when covid struck, I was in hospital for a knee replacement. In the last few years I have accepted housebound limitation, outside journeys by taxi, walking support by 2 sticks or rollator, and activism by Zoom. It's a big difference, I'm clearly disabled. I wasn't obviously before. What also changes is the ability to take an active part in events, in my case mainly trade union and political. I am able to sit and run a stall. My ability to proofread and copy edit is unchanged, and can be done at home. But I am unable to stand for any length of time, march, leaflet. No pickets, no banner carrying. So I have adjusted as well as accepted, and bought a folding chair that fits in the taxi boot.
Where I am of course winning is that neither migraine nor arthritis are mortal illnesses. They cannot kill me. Irritate me, prevent me from doing things I want to do, give me pain, yes. Your diagnosis is totally the opposite, and I am very sorry that is the case. I hope your friends, colleagues, and relatives continue to support and encourage you, and your post describing what has happened is not only entirely frank and honest, but a wonderful example of telling people you have never met exactly what you have and are experiencing now. I wish you all the best in terms of whatever treatment or help that you may receive, and hope you will be able to continue your writings as long as you are able and comfortable doing so.
My husband thought I was having a stroke nope several years later MSA-C in Dec 2024 i couldn't walk because of dizziness shake couldn't drive or sign my name, I was on 5.5 levodopa to help with increased rigidity that was causing severe joint pain. I was also on Vit D, B12 but that didn't help much and worsened my edema.. my neurologist took me off all meds as they weren't working and suggested we try alternative treatments, so last August, our family doctor started me on the MSA-5 protocol—the best decision ever! 4 months into treatment and my symptoms improved. My muscle weakness has improved and i can now walk down the street and back, the Dizziness are gone, my sleep pattern has also returned to normal and i have become very active. Visit Limitlessnaturalwellness. com for the MSA-5 protocol, for me i would say this is a breakthrough for people with Multiple System Atrophy
Thank you for the quote from Suzanne O’Sullivan. I was not aware of her before this. I'm always on the look-out for medical practitioners who see the world differently from this western medical box we are in. I've begun to listen to her interviews on YouTube to hear the words directly from her mouth. From the age of ten I wanted to be a doctor who cared for children, but a lack of confidence in my strange ways of seeing the world, along with the discouragement from my family of origin, overcame my efforts. She is my kind of woman. And we both come from Ireland; although, I'm from the north, so not a true Irish woman. I've had many doctors throughout my life, a few who had open minds and hearts and trusted my decision-making about my own healthcare. One family doctor (of British origin) in Ontario said to me when I came to him at age 16 with depression, "I had the same problems as you until I committed suicide." I thought he was recommending suicide, so I climbed to the top of a building with the intention of jumping off. I didn't have the courage to follow-through. While in the psyche ward for the following weekend, he never once visited me. Words are powerful and when they are spoken by an authority figure, they carry a lot of weight - dangerous weight sometimes.
We debated sharing Dereck’s diagnosis for all the reasons you describe . But we decided that we could trust those that love us and that they would want/ expect to know so they could support us.
Yes it changed how a few friends treated us but that price was worth having the love and support and
understanding of the many .
And like your friend Murray we find the humour in a situation we can’t change.
I was diagnosed with age-related macular degeneration a couple of years ago. It’s incurable and, as I’m only 69, the chance of going blind before I die is a real possibility.
I’m reminded of it every day when I look at text and can’t see it properly, and when I do the three times a week Amsler grid test.
I tell people about it but they don’t really understand what it is like. It has impacted my plans for the future. I live alone and have no partner or family. So I must be prepared to go into care should I go blind. I also have two much loved cats and I realise that when they die, it may be better if I have no more.
None of this fills me with hope for a happy old age, but there’s little I can do except to make the best of the situation.
Phil -- your latest essay is a great example of how to "grow older with gusto". It was a privilege to have you as a guest on the podcast -- "Growing Older With Gusto".
It's an age old fact in medicine that the person who has the disease is as important as the disease that the person has. Become acquainted with "Philip's" PD as it is surely different from "John's!" Sandy Horodezky
I am sorry about your diagnosis. The 'other' who is now walking beside you must not become a bully. Show who's boss by walking, dancing and singing. All great fun and all prescribed! Xo
(Sorry- I keep hitting the send button before I’m planning to send it!!) so, I really appreciate you sharing your thoughts on this. I wonder if it is trying for that balance- telling some we needed some desires but not feeling the pressure to tell everyone? Knowing that this is now a part of your identity but working to not have it take over completely how you think about yourself? And ultimately, being in the moment, the here when now, as much as possible? Thanks again.
I have thought about how I would/ will handle receiving a major diagnosis such as Parkinson’s- will I tell people? How to have this knowledge and not have that become my identity?
Sending lots of love your way. Treat it like a distraction, if you can, from the topsy turvy world that surrounds us today. Or ... use the entertainment provided by the topsy turvy world to distract you from the PD, if you can.
Illness and identity is a huge issue, not only for patients but also for docs. Medical trainees were admonished by their staff physicians for referring on rounds to “the lung cancer in room 12” or “the congestive heart failure in ER”, as opposed to the person with those problems. And medical sociologists in the last century wrote about “the sick role” where, for some patients, illness becomes identity. Finding the sweet spot between the extremes of denial and defeat is the challenge, but generally it’s harder to keep a secret than to share the truth. And other people, noticing symptoms, may be left to their own fantasies about what is actually going on. I watched one of my Cape Breton uncles cope with Parkinsonism over 25 years. He claimed it improved his golf game by slowing down his backswing - true to his character. We bring our unique trajectories and temperaments to the templates of disease, leading to the variety of illness experience. But you will always be, alliteratively, Philip first and foremost!
At our age we all have stuff. The trick is to apply all the treatments (potions, pills, etc
) we can and get on with living.
I've had an invisible disability since I was 10. Migraine, frequent and severe. Didn't mention it much, missed school and then work at times. Medication changed regularly from age 20 onwards, carried pain killers everywhere. Just part of life, no one else in the family had it.
Arthritis arrived around age 55, and this I expected. Both sides of the family had it. Only a few aches and pains, but at 74, when covid struck, I was in hospital for a knee replacement. In the last few years I have accepted housebound limitation, outside journeys by taxi, walking support by 2 sticks or rollator, and activism by Zoom. It's a big difference, I'm clearly disabled. I wasn't obviously before. What also changes is the ability to take an active part in events, in my case mainly trade union and political. I am able to sit and run a stall. My ability to proofread and copy edit is unchanged, and can be done at home. But I am unable to stand for any length of time, march, leaflet. No pickets, no banner carrying. So I have adjusted as well as accepted, and bought a folding chair that fits in the taxi boot.
Where I am of course winning is that neither migraine nor arthritis are mortal illnesses. They cannot kill me. Irritate me, prevent me from doing things I want to do, give me pain, yes. Your diagnosis is totally the opposite, and I am very sorry that is the case. I hope your friends, colleagues, and relatives continue to support and encourage you, and your post describing what has happened is not only entirely frank and honest, but a wonderful example of telling people you have never met exactly what you have and are experiencing now. I wish you all the best in terms of whatever treatment or help that you may receive, and hope you will be able to continue your writings as long as you are able and comfortable doing so.
With me best wishes, Liz Thompson.
I appreciate your courage and candour in sharing this.
My husband thought I was having a stroke nope several years later MSA-C in Dec 2024 i couldn't walk because of dizziness shake couldn't drive or sign my name, I was on 5.5 levodopa to help with increased rigidity that was causing severe joint pain. I was also on Vit D, B12 but that didn't help much and worsened my edema.. my neurologist took me off all meds as they weren't working and suggested we try alternative treatments, so last August, our family doctor started me on the MSA-5 protocol—the best decision ever! 4 months into treatment and my symptoms improved. My muscle weakness has improved and i can now walk down the street and back, the Dizziness are gone, my sleep pattern has also returned to normal and i have become very active. Visit Limitlessnaturalwellness. com for the MSA-5 protocol, for me i would say this is a breakthrough for people with Multiple System Atrophy
Thank you for the quote from Suzanne O’Sullivan. I was not aware of her before this. I'm always on the look-out for medical practitioners who see the world differently from this western medical box we are in. I've begun to listen to her interviews on YouTube to hear the words directly from her mouth. From the age of ten I wanted to be a doctor who cared for children, but a lack of confidence in my strange ways of seeing the world, along with the discouragement from my family of origin, overcame my efforts. She is my kind of woman. And we both come from Ireland; although, I'm from the north, so not a true Irish woman. I've had many doctors throughout my life, a few who had open minds and hearts and trusted my decision-making about my own healthcare. One family doctor (of British origin) in Ontario said to me when I came to him at age 16 with depression, "I had the same problems as you until I committed suicide." I thought he was recommending suicide, so I climbed to the top of a building with the intention of jumping off. I didn't have the courage to follow-through. While in the psyche ward for the following weekend, he never once visited me. Words are powerful and when they are spoken by an authority figure, they carry a lot of weight - dangerous weight sometimes.
We debated sharing Dereck’s diagnosis for all the reasons you describe . But we decided that we could trust those that love us and that they would want/ expect to know so they could support us.
Yes it changed how a few friends treated us but that price was worth having the love and support and
understanding of the many .
And like your friend Murray we find the humour in a situation we can’t change.
Thank you for sharing Philip .
I was diagnosed with age-related macular degeneration a couple of years ago. It’s incurable and, as I’m only 69, the chance of going blind before I die is a real possibility.
I’m reminded of it every day when I look at text and can’t see it properly, and when I do the three times a week Amsler grid test.
I tell people about it but they don’t really understand what it is like. It has impacted my plans for the future. I live alone and have no partner or family. So I must be prepared to go into care should I go blind. I also have two much loved cats and I realise that when they die, it may be better if I have no more.
None of this fills me with hope for a happy old age, but there’s little I can do except to make the best of the situation.
Phil -- your latest essay is a great example of how to "grow older with gusto". It was a privilege to have you as a guest on the podcast -- "Growing Older With Gusto".
It's an age old fact in medicine that the person who has the disease is as important as the disease that the person has. Become acquainted with "Philip's" PD as it is surely different from "John's!" Sandy Horodezky
I am sorry about your illness and admire your ability to see beyond it.
I am sorry about your diagnosis. The 'other' who is now walking beside you must not become a bully. Show who's boss by walking, dancing and singing. All great fun and all prescribed! Xo
(Sorry- I keep hitting the send button before I’m planning to send it!!) so, I really appreciate you sharing your thoughts on this. I wonder if it is trying for that balance- telling some we needed some desires but not feeling the pressure to tell everyone? Knowing that this is now a part of your identity but working to not have it take over completely how you think about yourself? And ultimately, being in the moment, the here when now, as much as possible? Thanks again.
I have thought about how I would/ will handle receiving a major diagnosis such as Parkinson’s- will I tell people? How to have this knowledge and not have that become my identity?
Thanks, Philip, for sharing these thoughts about illness and aging.
Sending lots of love your way. Treat it like a distraction, if you can, from the topsy turvy world that surrounds us today. Or ... use the entertainment provided by the topsy turvy world to distract you from the PD, if you can.