Still no cure for Parkinson’s

Laura Wilson of Vernon shares her story of living with Parkinson’s disease

Editor’s note: Laura Wilson shares her experience of living with Parkinson’s.

Dear Laura,

My name is Idiopathic Parkinson and it’s my time to thank you for your body that I now use as my vessel to progress and wreak havoc for all your years to come.

I’ve been watching you closely since I joined you, your husband, your family and friends in February 2014 and I want to tell you that ” I love you.”

I reared my ugly head one hot, beautiful day in the Dominican Republic by making sure you or someone would notice I was forcing you to bend at the elbow on your right arm. Then, when no one noticed quick enough for me, I made the arm stop swinging. Aha! Finally I was noticed, but you shrugged me off.

Well, you needed to know that I wasn’t going anywhere. I just hung around, waiting patiently until a stressful event came into your life, a common way for me to introduce myself stronger, and sure enough that event arrived.

Your husband was diagnosed with bladder cancer and then told he could not have surgery to remove it because it was discovered he also needed a pacemaker.

I really felt bad about my timing. However, it was my time to get you to take me seriously, so I gave you a right hand tremor. Oh boy! How I enjoyed watching you spin: researching Google, trying to self-diagnose yourself for hours turning into days, but then, you all do that.

Your doctor, like many, mistook me for Essential Tremors, but you knew it was something greater.

That October you left to spend another hot winter in the Dominican Republic. I wasn’t letting up on the tremor, so you decided to find two top neurologists in Santo Domingo who could provide you with their opinions.

After many hours of research you found your neurologists, Dr. Santoni and Dr. Ruiz, who both trained in England. Both are top in their field. Both came to the same conclusion: Me! Parkinson’s!

Dr. Santoni was the first to tell you I was living in you. Watching your husband’s head droop on the doctor’s desk while weeping was by far the most intimate emotional moment I’ve shared with you. Even the doctor had to leave you both alone to cry it out. I’m sorry that I hurt you both so deeply.

I held your hand while you fell down a rabbit hole and couldn’t claw yourself out. Day after day crying and asking, “Why? Why me at the age of 55?” Depression and denial took over, while I decided to add rigidity in your right shoulder to accompany the tremor in your right arm. Perfect combination. No right arm swing, shoulder rigidity and tremor. Three of the cardinal signs that I have arrived.

You didn’t snap out of it for weeks. I was starting to think you were not going to allow me to progress. You were scaring me and I don’t scare easily.

You decided to start a list titled “What I hate most about Parkinson’s” and came up with the following:

n The unrelentless progression of symptoms. The thought that no matter what I do I will get worse with time because there’s no cure.

n My fear of dementia.

n Constantly hiding my tremor by wearing pockets to hide it in.

n My fear I won’t be able to take care of myself.

n My anger towards people who don’t care to understand the severity of Parkinson’s and its effect on our lives.

n Taking more meds than any human body can/should tolerate.

n Having to take meds for side effects caused by other meds and not by the disease itself.

n Being told we can live a normal life span but not realizing our years are filled with challenges and pain. Quantity is nothing without quality.

n The obligation to feel thankful for all of the above because “I won’t die due to Parkinson’s, but my spirit may.”

So I pondered on all of the above and here’s why “I love you.”

You finally stopped wallowing in self pity, stood up and decided to take me on, chanting your battle cry every morning in the mirror, “Bring it on!”

You’re proactive in slowing me down by searching out what works best to delay my progression. Exercise! Good, old-fashioned exercise is the answer, and meds as you need them.

Your daily relentless power walking of eight kilometres a day. Joining two Parkinson’s workout programs at a gym that has programs specifically for me: boxing and circuit training taught by compassionate individuals who truly care about you, who truly want me to stick around longer by slowing me down, way down.

So I’ll close my “love letter” to you by saying you are one tough competitor! You never let me down by allowing depression in or giving up on me. You have learned to accept me, and by doing so, you adapted to our new life together. I thank you.

Love, Parkinson

Give your support to finding a cure for Parkinson’s by participating or sponsoring a walker in the annual Parkinson SuperWalk, which takes place Sept. 10 in Vernon at Polson Park. Registration is at 9:30 a.m., the walk begins at 10:30 a.m. For more information, call Rhona at 250-542-8349.

Boxing and circuit training for people with Parkinson’s takes place at Iron Heart Gym with trainers Rhona Parsons and Tony Stamboulieh.

A support group runs September to June on the third Thursday of the month. For more information, please call Laura at 236-426-1586 or Bill at 250-545-2232.

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