Parkinson's disease: "My next goal is to put my Parkinson's into remission!"

Hello domi62350, thank you for accepting to share your story with us on Carenity.

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

I've been living with Parkinson's since I was 52. I live as if I were living with a stranger that I have to get to know. But this stranger is sneaky, nasty, painful, unpredictable and he is growing rather too fast, but I have no choice, I have to live with him.

As I always say, I coexist with Parkinson's without worrying too much, and above all I keep moving, loving and living!

I was born in the north of France, but my parents left very quickly for eastern France where they moved and changed jobs very often, which was very destabilising for me.

I have a younger brother and sister and I felt somewhat responsible for them, like many eldest children. We went through a number of difficult life events, alone in that part of France: we had no grandparents or family nearby, and had a serious fire where we lost everything and where I thought I was going to lose my mother, who afterwards was always "ill". 

When I was 14, my parents decided to move back to the North. As a teenager, it wasn't easy!

I got married at 22 to a wonderful man and we have been together for 37 years. The marriage was complicated as my mother did not agree with my choice but for the first time in my life I stood my ground. Now she realises that her son-in-law is a very good person.

I had two daughters after much difficulty, because I had originally been told that I would not be able to have children (another big step to take). I also suffered a miscarriage at 3 months, which was very hard because I thought I had made it through the early stages of the pregnancy.

All of this to explain that I accumulated a lot of "baggage" and things that I could never talk about and, over time, my body expressed its stress in its own way: illness.

You have Parkinson's disease and shared a testimonial with us in 2019. How has your condition evolved since that first testimonial? How is Parkinson's affecting your daily life at the moment?

When, in 2014, I realised that there was a problem (tremors, pain), the doctors treated me for depression. But after several months without change and after a few tests and exams (DaTSCAN, a brain scan), I was diagnosed with Parkinson's disease.

When I was called in to view the scan results I went by myself because I was very sure in my mind that I had it whereas my loved ones were not at all. No one could or would believe it, because of course: Parkinson's happens to other people, how could it happen to us?

But, despite the fact that the results were clear, it felt like the sky was falling!

But then, after a few rough weeks, I picked myself up and decided to fight, so I did my best to learn as much as I could and started: 

• Physiotherapy sessions to work on my balance, massages for my shoulders and neck to avoid stiffness and pain,
• Singing loudly: helps to me articulate, to work on my breath and helps my memory because I make a point of learning everything by heart,
• Dancing: this is excellent therapy for me because I can keep a certain tempo in my walking,
• Yoga: to help with my balance, keep my joints working properly and helps with breathing,
• Walking,
• Handicraft: sewing, knitting, crocheting, I even wallpapered my entire house by myself,
• Organising sing-offs and karaoke in different charity groups, with the goal of visiting retirement homes too.

I was even asked to MC a wedding last year as a new challenge! I said yes - being a DJ as a 58-year-old ill woman, it truly made me feel alive!

In short, I keep myself very busy, I like to have an overloaded agenda, it proves to me that I'm alive, that I have my place in this life!

Unfortunately, Parkinson's hasn't reach my limbs like it does in many others, but it has attacked my intestines where I have many issues. But overall I'm doing pretty well.

>> Discover Dominique's first testimonial by clicking here! <<

Could you remind us of what sort of care you received? What treatments are you taking? Are they effective?

My treatment at the moment is:

• 6:00 AM : 1 Madopar (rensarazide) 125 mg + 1 Azilect (rasagiline)
• 7:30 AM: 1 pramipexole 2.10 mg + 1 pramipexole 1.05 mg
• 9:00 AM: 1 Madopar 62.5 mg
• 12:00 PM: 1 Madopar 125 mg
• 3:00 PM: 1 Madopar 62.5 mg
• 6:00 PM: 1 Madopar 125 mg
• 10:00 PM: 1 Madopar 125 LP + 1 Madopar 62.5 mg

And if I need it at night, I take 1 Madopar 62.5 mg.

It took more than a year to find this right dosage, and I think it suited me before, but with all the work I'm doing on myself and feeling better and better, I hope my neurologist will lower it soon.

Because I haven't told you yet that my next goal is to put my Parkinson's into remission! I don't say cure, let's not delude ourselves! After all, every year around the world, we hear these kinds of experiences where doctors don't know why but people manage to do it.

You have been seeing a hypnotherapist as well, what benefits do you get from hypnosis?

I have been seeing a hypnotherapist for 3 years now. Hypnosis has been a revelation for me and it is not unrelated to the benefits I feel. Today, it helps me mentally, spiritually and even in terms of my strength, it helps me to look within myself and understand myself better. Thanks to her, today, I am much more serene about the things that happen in my life.

I live my life as I have never lived it before, I have learnt to put things into perspective, I no longer get caught up in futile things.

But do know, this requires a lot of work at the beginning and I'm still not there yet. It's an ongoing process but I do enjoy it as well.

So you decided, on the advice of your hypnotherapist, to write down everything you were feeling. Could you tell us more about it? What benefits do you get from it?

It was during one of our sessions that he asked me to write down my life, my feelings, my joys, my fears, my sorrows... In short, to empty my heart into a notebook. We don't know what will become of it, but at least at first it helped me enormously to free myself and in a certain way to express the things and feelings I don't dare say. 

After that, well, that's another story. I started the next day and I felt like I could shout and scream everything I wanted to say. I felt so good that it was an appointment I never missed. 

I really needed it because people around me don't talk about my condition, they avoid the subject, and then, on my end, I do everything so that nobody notices. 

In life, nothing happens by chance, our paths crossed just when I needed it, that moment when you think that nothing can fix the situation you are in.

Instead of "burning" your writings as you say in your first testimonial, you chose to publish them. Why did you do this? What do you write about?

Yes, I realised that everything I had written could perhaps help other people, so the idea of putting it all together and making a book was natural to me.

I'm not a writer, so it's written very simply with ordinary words. As it was originally only for me, there are personal things, I thought I would take them out, but at the same time they are part of life and can help. I'm talking, for example, about constipation problems and all that it causes, we know that Parkinson's sufferers are very much affected by this and as I've found a solution that helps me enormously, I've decided to leave everything.

I am therefore "laying myself bare" so that all my feelings are clear.

I also decided that this book would serve as a basis for me to go and speak at hospitals and other places.

I was admitted for a week at the regional hospital centre in Lille to assess my condition and treatment and well, they couldn't believe that my Parkinson's hadn't progressed when I explained all that I had been up to in my daily life.

Where can we find your book?

My book is called "Parkinson, celui que je n'ai pas invité" (Parkinson, the one I didn't invite). For now I'm handling my own stock and shipping. So you can find it on my Facebook page (in French): Parkinson, celui que je n’ai pas invité, or on my website: http://dominique62350.wixsite.com/parkinsonetmoi

You will find a PayPal link for payment if you wish to buy it.

You can also find it on the coolLibri site.

What can you book do for members who are also affected by Parkinson's disease?

I am aware that we are all different when it comes to Parkinson's, that it develops differently in different people, but if I could convince even one person, I would be delighted!

I want people to understand that you have to fight, even if it's not easy every day, you're tired (I know, I'm up every day at 1:30/2:00 AM and I still do a lot of the work at home, my walking, my physio). But when I manage to do everything, I take such pride in having succeeded, in winning battles against the disease, that I forget the pain and what it cost me in effort. I also know that it's giving me several more good years.

What advice would you give to Carenity members living with Parkinson's disease?

• LIVE! Don't let parkinson's take over your life, know that you are not alone and that social relationships are just as important as your treatment. You will notice that I hardly ever put a capital P in parkinson, it is not important enough for me anymore, let's put it back in its rightful place.
• Above all, don't let yourself be influenced by certain people around you. Like me, you will find that those around you have difficulty understanding. What I don't understand is why people around me are not simply happy to see that my struggle is bearing fruit. That thanks to everything I've put in place, I'm going to succeed in stabilising this disease, even if they don't agree with the chosen method. After all, it's my life, I'm the one in pain, I'm the one who has to live with the disease, I have to fight every day.

My behaviour has certainly changed. Of course, when I see the number of neurologists who now realise that this disease is often due to the fact that we never dared to be ourselves, to say our way of thinking, to save ourselves... well, yes, I have changed!

Any final words?

As a last word, I would like to offer you the conclusion of my book! 

"Today, December 26, 2020, the whole world has just spent the Christmas holidays in the midst of a lockdown, but a new day is beginning, and despite everything that is happening right now, I am certain that it will be a wonderful one.

And yet, despite the bad weather, despite the days that go by without seeing my daughters, despite not knowing what tomorrow will bring, despite my body having to fight the pain, I feel at peace with myself.

I am aware that those who know me have seen a change in my personality for a good year now, yes, despite all the negativity in life today, I have managed to get in tune with myself, to find deep inside me, the power to be me: this woman who for too long was forgotten by herself first and by others second, this woman who thought that by doing everything that was expected of her, by living a life that was against who she really is, would necessarily be loved and appreciated in return, all those things from others that she thought she needed so much!

It was nothing of the sort!

It was at my expense that I learned, it took hard knocks, illness to make me realise that I was not living my life, this life too often impacted by too many people, events that pushed me to withdraw into myself and no longer have any consideration for the person that I am, I stepped aside to make room for others. 

Many words have remained in my heart for a long time, some have managed to reach my throat but few have reached my mouth.

Today I live with my own ideas, my own desires and I think and do as I feel in my heart, and you know.... 

This gives me wonderful feelings of well-being, freedom and pride, which will allow me to move forward serenely on the path of MY life.

Today, I want to have new goals that fit me, I want to be able to set them up as I see fit, I want to be in tune with myself without waiting for anyone's approval.

Today, more than ever, I want to feel free, I want to enjoy myself, I want to laugh, I want to be... happy to live MY life!!!!

This journey I have just taken has given me so much. I had to fight with myself, I started a war that some people would not even dare to consider.

I know how to recognise my faults, my limits, but now I also know how to see my qualities, I have understood that I deserve to live as much as anyone else.

I understood that I have to let the people who really love me support me.

Many people think that I am strong and that I take responsibility for my situation to be able to fight like this every day, but no, I am just driven by the 'desire' to get out of it, I have worked on the 'power' to get there.

All these changes are not due to chance, they have been the subject of a lot of work on myself. 

This work is not finished and I still have a lot to learn, but I am confident I will get there."

Many thanks to Dominique for sharing her story with us on Carenity!

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