Parkinson's disease: "The disease progresses, but I am and will be stronger than it!"

Hello Brigitte, thank you for agreeing to share your story with us on Carenity!

First of all, could you tell us a little bit about yourself? 

I like nature, megaliths (large stones forming a prehistoric monument) and being in a good mood. I'm an optimist and I love walking by the sea, it's very relaxing and it also helps with walking when my foot refuses to move. And yes, this is one of the drawbacks of Parkinson's disease with which I was diagnosed over 8 years ago now. I have been retired for 8 years and live alone by choice. 

You have Parkinson's disease. What symptoms led you to seek help? When were you diagnosed? What tests did you undergo?

I had noticed that my right hand, and even sometimes the entire arm, would have tremors and it really bothered me. Sometimes my arm would fling out and hit people around me, which was terrible because I couldn't control it and obviously didn't want to hurt them. Fortunately, I'm not very tall so the arm would just hit me in the chest. I was embarrassed... My doctor advised me to see a neurologist who did movement and range of motion tests only. I couldn't even make tea or write a letter. Either my wrist refused to turn, or my arm stretched out my handwriting, which was no longer legible. To keep from shaking, I absolutely had to keep this hand busy.  

How did you react to your diagnosis? How did you feel? What has changed in your life since? 

When they gave me my "sentence", I actually laughed! I was relieved, finally there was a way to improve my daily life!

What has changed in my life? Not much, actually, because for years I had been coping with the tremors by talking to my brain and keeping my hand busy. Only my right side is affected, people around me are astonished when they find out I have Parkinson's, for them this disease is only the tremor, I still live alone and I manage to do my own housework. 

What medication or treatments have you been prescribed? Are you satisfied? Have you had any side effects? 

My neurologist initially prescribed me a low dose of Mirapexin® (pramipexole), but it wasn't enough. So, we slowly increased the doses up to 2.1mg and then added 1mg of Azilect® (rasagiline) and it seems to be working for me now.

I don't have any serious side effects besides episodes of micro-sleep (sudden, temporary episodes of sleep or drowsiness lasting for a few seconds). I'm not sure if they're caused by my medications, my other treatments, or the Parkinson's....

Is your Parkinson's disease progressing? How so? Have you had any new symptoms? 

Yes, unfortunately it's progressing... More and more symptoms are becoming apparent, but it's hard to make the direct link between the symptoms and the Parkinson's.

For example, when I went to the ophthalmologist to change my glasses because my eyesight was becoming blurred, he told me that my eyesight had not changed and that it was due to Parkinson's disease. He said to me: "But do you never blink? You know that's how your eye gets cleaned out?" So I was given Systane Balance® drops. 

I note, and I advise you to do so too, any changes in my body and, most importantly, I talk my brain into obeying. It's tiring but it pays off! An example: my right foot often refuses to move forward, so I frustrate it, I walk backwards counting to 7, then I go forward again, it usually works. 

I'm going to give you a little list of all the symptoms I notice from day to day (don't forget to take yours with you to your next consultation):  

• Difficulty swallowing, aspiration (when things go down the wrong pipe)  
• Hypersalivation, 
• Heavy feeling in the legs and small steps
• Foggy memory (For example, when I watch something on television, I sometimes can't remember the name of what I'm watching for several minutes. Or when I'm in mid-conversation, I'll have a big memory lapse where I forget what I was talking about until suddenly I remember!)
• Episodes of micro-sleep
• Cramps in the thighs and feet
• Dizziness, drop in blood pressure when standing up
• Restless legs
• Difficulty speaking (in articulating and voice dropping to a whisper)
• Loss of balance 
• Involuntary movements in the legs and other limbs 
• Hyperactivity
• A new problem of teeth breaking off at the gum line (but needs to be checked with my neurologist and dentist)
• Muscle stiffness and hardening
• Difficulty breathing, after exercise especially (this doesn't help my COPD)
• Difficulty climbing stairs because of my balance, I have to hold on to the handrail

Do you feel supported by your family and friends? Are you able to talk openly about what you're experiencing? 

I am well supported, but I don't really have the opportunity to talk about the disease because it's not visible externally yet. I only talk about it with my friends. I try to ignore my Parkinson's as much as I can, but I don't have any problem talking about it. I walk a lot in my little village, which is very steep. 

What impact has Parkinson's had on your relationships with family, friends, and other loved ones? 

As long as I'm able-bodied, I don't have any problems, but if I can't see, eat or walk, it will be very, very difficult for me! I'll have to find a one-storey house and get a carer. Being a very independent person, I would find it difficult to ask for help and that's what bothers me most of all because I'm often reproached for it. They say: "But just ask us! You only have to ask!" I have a lot of trouble with that.

How do you live with Parkinson's disease in the day-to-day? Have you changed or adapted things in your daily life?

It's physically and mentally exhausting because you have to direct your brain all the time. I spend my days in "deep conversation" with my brain, focusing on managing my hand tremors and other aspects of the disease. 

You have to eat a balanced diet as much as possible and, above all, continue to live a normal life. You have to really try on that last point - it's often easy to say, buy very hard to do. You have to forget about the way others look at you and stand yourself back up, don't let yourself be weighed down by the disease! You have to live!                           

How are you doing today? What are you plans for the future?

My Parkinson's disease is progressing, but I am and will be stronger than it, I will continue to live my life as usual.

My plans are to be able to join a clinical trial for new, experimental treatments like the new brain stimulation and other things like that. 

What do you think of patient exchange platforms like Carenity? Why did you become a member? 

I'd like to give a BIG THANK YOU to Carenity for being there and letting people who need it speak for themselves, even if they're not aware that's what they need. We need communities and websites to help us understand our health conditions and move forward, but most of all we need humanity. We all need that on this earth.

You community is rich with love and understanding. I came here because of my daughter, who has been a member for a long time. I was looking for information and support and I think I've found it. We're not told a lot about Parkinson's when we're diagnosed, only about the main symptoms, and what I experience and discover in the day-to-day worries me a bit.

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

Dear members, don't be ashamed to ask questions and to ask for help because medicine advances and each case is different. Never compare yourself, KEEP MOVING and above all TAKE CARE OF YOURSELF! 

Any final thoughts?      

Yes, try, at least for a few hours, to lock the disease into your night table and live, laugh, celebrate, enjoy this moment and then return to your night table after. You have freed yourself for a few hours at least. 

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Take care!