A Message to Readers: It’s Not Just the Parkinson’s Disease
In a previous column that I wrote about courage, I mentioned an eye disease I have for which I receive monthly eye injections. Yes, you read that correctly. I get a needle in my eye. Actually, I get two needles — one injection contains additional anesthetic medicine after the topical application of a numbing agent, while the second injection contains chemotherapy.
The disease is unstable and progressive. Treatment is not the same thing as a cure. My providers do their very best to keep things under control. Unfortunately, I recently had a dramatic decompensation that has left me close to legally blind. It’s not the Parkinson’s disease alone that makes life difficult, but rather all the other medical “stuff” that gets thrown on top of it. I will be seeing another specialist for assessment and more treatment. But right now, the loss of vision makes it much more difficult to do the quality columns I am so fond of writing for my readers. It’s hard to adjust when such events hit unexpectedly and steal away another part of my self-identity.
Having been through other traumatic events in my life (and counseled others through traumatic injury), I know there is a process. There is a grieving process that has famously been described by Elizabeth Kubler-Ross. There is also a recovery process. Not all will be as bad during the healing process as it initially appears. A flood of emotions needs to be taken in, understood, processed, and then let go so that the healing may continue. Time is needed to make life adjustments to the effects of the physical trauma. All of this takes time, patience, and a gentleness with me.
The first emotions I work through are anger: “Why me? It’s not fair!” Then comes the self-pity: “This is too hard. I just can’t handle it. I wish someone would come and make it all better.”
Anger is a normal response. But anger and I just don’t do well together. I can easily become “The Grouch.” I am an ugly grouch, mostly because of what I call “spilling out behavior.” It’s been a bad day and the anger needs to go somewhere, so it spills out onto those closest to me. Talk about unfair! I have way too many skills to get into a verbal fight with those I care about.
Self-pity also spills out onto all of those around me. We may not realize it, but walking around with that dark cloud overhead casts a dark shadow on those closest to us. Clinging to the hope that someone will save us from our own fate if we just whimper and whine loud enough does nothing but create more suffering. The choice, then, is to accept that something bad happened and that is just the way it is. Time to pull it together and attack the new challenges.
Don’t get me wrong. I am not saying I feel all rosy and chipper about what has happened. I am upset and constantly reminded of the situation. Every time I open my eyes, I am forced to face head-on what has happened. If I let the emotions overwhelm me, I can’t move forward. If I can’t move forward, then my self-identity is headed for extinction. The choice is to accept the fact that something bad has happened, and it is time to figure out how to deal with it.
Part of figuring out how to deal with a dramatic loss of vision will involve all those changes and adaptations that need to be put in place in order to maintain a high quality of life. This new journey has just begun, and I will return to writing columns for this group of readers. Right now, though, I need to take a short break while I complete the medical procedures and then put into place any adaptations necessary for helping me to see the computer screen, to use pen and paper, and to explore other adaptive equipment.
Thanks to all my readers, editors, writers, and staff at Bionews Services for their kind words of support and encouragement. In the esteemed words of the former governor of California, “I’ll be back!”
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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Comments
Jim Mourlas
Get well soon!--It is inspiring to read about your approach to life's difficulties--
Craig Taylor
I will pray for you Dr. C
Walter Manning
Keep up the fight we will be praying for you. I know what you're going thru. We may not win every battle but we will continue to fight. I enjoy your column.
ART DUBOW
I'm aggrieved to hear your story of additional suffering. Will miss your insightful and inspirational postings
John Gartling
Thank you Dr. C for all your insightful and thought provoking writings. Get well and we'll look forward to hearing from you again real soon.
Sherri Woodbridge
Dr. C - I’m so very sorry to hear about the progression of yet another disease you are fighting. Know you are in y thoughts and prayers...
D. Duane MaGee
I’m so sorry to hear about your eye troubles, Dr. C. That, on top of having PD, is, indeed, disheartening! I can understand how it can be difficult, to cope and adjust, to what is happening to you. My Dad had macular degeneration, of the eyes, and had to have 2 shots directly injected into his eyes, each time he saw the opthalmologist. This went on for a number of years. I was very supportive and helped him, the best way I could, but I knew it was tough for him to deal with that! I have PD and Cerebellar Ataxia, along with Post Polio Syndrome. So, I have a hard time coping with all that, sometimes. Having good medical, family and friends support, plus support from a forum of PWP, is very helpful. Thank you, for sharing your story Professor! May the odds be ever, in your favor, Dr. C!
Christine Franklin
Praying for you everyday, your determination is inspiring,your will to adjust to the changes and find new ways to deal with PD symptons is encouraging to so many.My Best to you and Mrs. C
Chuck Nore
Hello, I'm Chuck. I've had PD for about 16 years. I am basically doing alright, however; tremors and leg weakness are surely a bother!
I was in Phouc Vin, in Vietnam; in 1965. It was here that I was in contact with Agent Orange.
I use the regular PD meds and I use Cannabis in a few different forms. I get pretty good results from CBD, in a vaporizer, or in oil capsules.
I have enlisted help from my wife to send this message. :o)
I wanted to pass along a sincere message of encouragement to you!
We PD patients all know it isn't easy going... but we can help one another along the way!
Best of Luck to you! Sincerely, Chuck Nore
marion grimmett
Dear Dr C,, I read with interest and appreciate your article of your path in life with Parkinsons.. as it comes with all the problems it brings with it.. I feel so sorry to hear of your eye problem, hopefully you will get some help with it.. so that you can get back to your writing etc...
I have just recently lost my man,, at the age of 78.. He had parkinsons for over 30 years.. and died of an infection which just took over..
During all those years of caring for him, I learnt so much about the disease, and in particular I learnt so much about how to Care for him better, in a way that improved his daily living..
He was a man of deep faith in his profession,, with the desire to help others in any way he could.. He especially worried about children, their welfare, and their future. Like you, he needed to do lots of writing, in particular, he needed to get messages through to parents about how to better care for their children, for them to have greater understanding mostly in the way that children were spoken to.. He completed studies with the Education Dept to be qualified to run classes for parents,, which he did and was very well liked and sought after.
Then on his retirement, due to ill health with Parkies at the age of 60, he was determined, and really looked forward to being retired so that he could spend his time writing books for children.. But life with Parkies got in the way,, he lost his ability to write, or to use the typewriter, and then he lost his voice.. so the dream of writing those children's books never eventuated.. but he never lost any of his ' wit ' -- or his ability to appreciate all the help that he was given by the Carers.
The Grieving Process -- this is such an important part of parkies,, as you do not have any idea of the path you will be taking in your future years.. -- should you feel sorry for yourself,, should you be annoyed '' why me '' ,, should you just give in ?,, NO,, -- you have to press on,, keep busy -, WE renovated an old house,, great fun, -- but it kept him busy,, whether that be physically, or mentally,, or both,, it all matters.. keep in touch with people around you and share in their interests... as they say '' laughing is the best medicine ''-- but we have to add ''music'' to that too ..
The Caring Process -- most important that your Carer, or all your Carers fully understand the ways parkies deals out all the daily effects of your muscle movements, your physically abilities, your mental abilities , your medications, and your determination... I had a note on the wall for the Carers which read,,
'' I know what you want me to do, but I just cannot do it that fast ''
We had wonderful Carers, they were all so helpful, both to my husband and to me as well, and I thank them all for that deep understanding they had.. - and especially for their interest in learning more about the disease.. as they would so often say to me '' why were we not taught all this in our training''
-- hopefully the day will come very soon, when they will..
Josephine Cook
Definitely can relate to lashing out! Husband doesn’t understand. Not his fault. He thinks I dwell on having PD. So difficult for me. Just diagnosed. A few months ago. Feel like I’m no longer myself!