Parkinson's disease: "I hid my disease from my employer for two years"

Hello JAMMCE, you agreed to testify for Carenity and we thank you for that.

First of all, could you tell us more about yourself?  

Hello, my name is Jean-Claude (called JAMMCE on Carenity), I am 61 years old, I have been living alone for 8 years and I have 4 children. Twins, a boy and a girl, they are 29 years old and from a first marriage, I also have two boys in alternating custody (16 and 19 years old) from a second relationship. 

I have spent my entire career in the capital goods industry. First in photography, then in the medical field as a customer service manager. 

I am a motorcyclist. My passions are: travel, DIY and motorcycles. 

You have Parkinson's disease. Can you tell us what your first symptoms were? What prompted you to seek help? When were you diagnosed? 

I love Asian and especially Japanese food, I used to use chopsticks with some dexterity (3 professional trips to Japan). At the beginning of 2019, I noticed that I was having more and more trouble using these chopsticks, I talked to my doctor who suspected carpal tunnel syndrome and recommended that I see a neurologist. 

At the carpal tunnel level: everything is clear. In April 2019, the neurologist prescribes me a brain scan, a Dat-scan. 

In August 2019, the diagnosis falls: it is Parkinson's disease. It was terrible, I was already in remission from a prostate cancer that had been diagnosed 3 years earlier. 

How many doctors have you consulted?

So far, I have seen 3 neurologists. 

The first, who diagnosed the disease, left private practice for public practice. 

The second, who was his replacement, was not very concerned about my case. I alerted her by e-mail in February 2022 of a strong deterioration of my condition which she did not see fit to read... And when she received me, much later, she contacted the neurology department of Mondor for an emergency appointment. 

And finally, the third one at Mondor who is now following me. I feel much more cared for. The second one has since changed departments. 

What kind of care are you currently receiving? What treatments do you have? Are you satisfied with them? 

I have 2 physiotherapy sessions per week. I am also, for the last 3 weeks, followed by the anti-pain center of Kremlin Bicêtre, with very negative results. I will soon have chiropractic sessions.  

I was able to obtain the Mobility Inclusion Card (CMI) which I never use. I admit that I have difficulty using it and getting into the queue, for example. 

I am waiting for a place at a clinic for a day hospitalization of about 2 months for physiotherapy, psychomotricity, ergonomics, adapted physical activity (APA) and speech therapy. 

My treatments are : Neupro®, Levodopa, Toviaz® for bladder, Tramadol, Versatis® patches (1 every 12 hours) for low back pain, and paracetamol for permanent pain in my lumbar, spine, neck, right arm and legs. 

Without these treatments, I might be in a wheelchair, but I see that there is no effectiveness to date. 

Three months ago, I could walk for two and a half hours. Today, I can't even walk 200 meters without getting exhausted and almost falling down several times. 

I should mention that I am really bent over, I have the Pisa Tower syndrome, a strong scoliosis, a lazy right leg and really unbearable back pain. 

Did you know about Parkinson's disease before your diagnosis? Were you able to receive all the necessary information from health care professionals? Did you do your own research? 

Yes, but only for the tremors, and I have muscle stiffness and not much tremors... 

No, I have not received any information from health care professionals. 

I spent hours on the internet doing my own research and learning about this disease. 

I consulted two rheumatologists for my back pain, I had infiltrations, many X-rays/MRI... without any result. 

Faced with the confusion of these professionals, I did my own research and consulted two orthopedic surgeons who, in 10 minutes, diagnosed me with scoliosis which is the result of the weakening of the erector spinae muscles caused by Parkinson's disease. 

The solution? Wear a back brace and deal with the pain. Surgery is not an option because the disease is progressive. 

What is the impact of Parkinson's disease on your private and professional life? 

After hiding my disease from my employer for 2 years, it has become difficult for me to hide my speech problems, my posture, my slowness, my hyperemotivity... Moreover, I can no longer write because I am right-handed and it is my right arm that is affected. Being the head of a department, it had become unmanageable! 

I am on long term sick leave since August 2021 with a one month rehabilitation phase following a total right hip prosthesis and I should claim my retirement rights for 2023. 

I would like to point out that my employer has been exemplary in managing my illness within the company! 

My private life, all my retirement projects, my desire to tour Europe on a motorcycle, my DIY, my love life, my walks, my travels are definitely compromised. 

I am 1.93 m tall, rather athletic, but disarticulated, I have difficulty inflicting this posture on my teenagers, I am a little ashamed of the image I give them....

Have you had to change any of your lifestyle habits? If so, why? 

I do an average of 3 hours of sports per day: 1 hour of stretching, 2 hours of gym and 1.5 hours of swimming twice a week, I also do 2 hours of cycling per week.  

It seems to me that this slows down the effects of the disease! 

On the other hand, I only go out for physical therapy, sports and shopping (with a cart for the walker). 

I have a healthier diet even though I never smoked before, no alcohol or drugs, no parties and a reasonable food hygiene. My only addiction is sugar but it is under control. 

I listen to a lot of music. 

Apart from your treatments, do you use alternative methods? 

For the moment, no, but soon I will try therapeutic cannabis if I don't see results within 3 months with my current treatments.

France is really behind in this field, it's sad!

Do you talk easily about the disease ? Do your relatives support you, do they understand you? 

Yes, very easily, especially now that I can talk about it without tears in my eyes. You realize that nobody knows the symptoms of this disease, except for the tremors. 

I recommend this excellent communication campaign from TBWA, I get tears in my eyes every time I see it. 

I get a lot of support from my family, friends and former colleagues, which is invaluable.  

I lived through the first months of the disease in correspondence with a very close friend who lived in the south of France. 

She suffered from Charcot's disease which was diagnosed at the same time as mine. She chose not to fight and left us last December. 

I loved her very much, I miss her very much. She was my biggest support. 

What advice would you give to Carenity members who are also affected by Parkinson's disease? 

Given the meager results obtained to date, it would be pretentious of me to give advice to Carenity members!

Any last words? 

I have had some difficult times in my life, I have always looked for and found the positive in the situation. The glass is half full. 

I haven't found it yet but I don't despair, it will just take a little more time.