Joie de vivre despite Parkinson’s : personal challenges, hypnosis and treatment

Hello and thank you for agreeing to answer our questions. Can you tell us a little about yourself?

I was 52 when I got diagnosed, 7 years ago now, and I keep fighting with what I’ve got, I try to stay moving, I love to sing and I do what I can. I see a chiropractor 3 times a week for the pain in my right arm and do exercises to improve my balance. Once a week I see a sophrologist and between all of that I also see a hypnotherapist who’s helped me accomplish many things and I owe her a lot.

Living with Parkinson’s is like living with a stranger that I’m trying to get to know, but the stranger is sneaky, nasty, hurtful and unpredictable. He takes up far more space than I’d like, but I have no choice but to put with him. As I always say, I live with him without asking too many questions and I keep moving, loving and more than anything, I keep LIVING!

What were the initial symptoms?

For a while, I had noticed that my right hand would tremble, my right shoulder hurt and the pain was spreading down my arm and sometimes pain in my lower body as well that would wake me up at night and which felt like cramps. I had more and more trouble sleeping, I used to wake up at 4AM to get up and pace back and forth in my house just to deal with the pain. I talked about it with my doctor who preferred to wait a little while before doing any tests. But after several months of waiting nothing had gotten better, the opposite happened…

My doctor decided to send me to neurologist ,and after I answered many questions, he decided to have me do a DaTscan. It took a really long time (2 months) to get the results back.

How did you and your family react to the news?

The day I was supposed to go to the neurologist for my results, I went alone, thinking I could take anything he could throw at me. But when the neurologist told me I had Parkinson’s, I felt like the sky had caved in over my head, It’s true, that I already suspected it, but when the neurologist was explaining the treatment they were going to put me on, I admit I wasn’t really even listening. I only wanted one thing: to get out, to run out of his office.

When I told my family, they were extremely upset as well, but what shocked me was, for them, it was better if I just stayed quiet and didn’t talk about it at all. I couldn’t get my head around their reaction.

What sort of medications do you take?

For my first treatment, the doctor prescribed SIFROL (Pramipexole), AZILECT (rasagiline) and MADOPAR (levodopa and benserazide) in low doses combined with DOMEPRIDONE for the nausea.

Now I take:

• - Azilect: 1 in the morning
• - Sifrol 2.1 : 1 in the morning
• - Sifrol 1.05 : 1 in the afternoon
• - Madopar 125: 1 in the morning / 1 at 10:30PM / 1 at 2:30PM / 1 at 6:30PM

Besides medications, what other treatments do you take?

I see a chiropractor once a week for the pain in my right arm and shoulder and 2 times a week to work on my balance. It works well for me.

I do a sophrology session once a week.

I see my hypnotherapist once every 6 weeks more or less (when I feel like I need it). For me, hypnosis was a revelation, I discovered someone who was very kind, who gave me my hope back and thanks to him I feel great.

Has your condition had an impact on your social life?

I feel like I go out even more than before because I don’t want to stay shut in by myself. I’m a member of several associations, I volunteer for charity events, I organise karaoke parties…To give you an idea, a few weeks ago I even MC’d a wedding. That was a challenge: a DJ at 56 years old. My husband didn’t want me to do it, he thought it was going to leave me worn out, but I insisted. You know, the thing that made me the happiest was to see that I could still bring joy to others.

The joy of seeing other people is very important to me. That’s what keeps me alive, what helps to me to “accept” my condition, to even be proud of it – let’s not mince words.

What’s been the hardest part of this condition on a daily basis?

Waking up in the morning, it’s horrible. I’m always saying, “Thank goodness my house has walls” because I have to cling onto them to keep from falling. The problems with constipation too. But on the other hand, my husband and daughters help me to stay positive.

What sort of advice would you give to someone who’s just been diagnosed to help them live better with this illness?

It’s hard to say because everyone reacts differently. It’s true, we all have our own experiences, our own symptoms, our own history and everyone lives with the disease in his or her own way. The only thing I will say is, don’t just stay sitting in your armchair all day: act, do all the things you love to do, take advantage of the time you have with the people you love and more than anything LIVE!

Every night before I go to sleep, I say to myself: “Another beautiful day lived.”. Take advantage of every day because you never know what the next may bring.

Many thanks to Dominique for sharing her inspiring story and advice! Share your reaction to her testimonial or your own experiences in the comments section below.