When the Little Monster’s Game of Parkinson’s Disease Is Thwarted
I don’t feel very good. My stomach feels nauseous because my head hurts. My head hurts because I can’t stop grinding my teeth, which only adds to the stiffness in my neck, which makes my back hurt more, which makes me want to yell, “ENOUGH ALREADY!”
But … I am not going to yell. Whom would I yell to anyhow?
It’s all part of Little Monster’s game: Pick an innocent bystander. Get inside their head. Turn the knob on the basal ganglia a quarter of a turn. It won’t take much — it’s a small, tiny, minuscule, little thing.
And yet, in that oh-so-small, minuscule, tiny, little thing lies the key to Little Monster’s plan. The plan to take over your life. To put a stop to the production of dopamine cells.
No one knows how Little Monster enters. No one knows which knob he turns in his quest to rule your body. But it works.
Production stops — or at least slows — and you begin to feel different. Strange. Off-balance. You stumble. You shake. Your movements no longer belong to you.
You begin to take a pill for this. And then you take a pill for that. And before you know it, you have a handful. You wonder why you’re sad and then, all of a sudden, you’re not. And when you’re not, you wonder why you ever were. And it goes around and around and around.
Your toes curl in, your legs cramp up, and your hands and arms take part in the plan. You are left feeling pain and experiencing disfigurement and despair and loss. And you grieve for what was, for what could have been, for what is now.
But, then you have a good day. A day with sunshine, although, perhaps hidden behind the clouds. You see the rays break through and you turn your face toward them, just to soak in the healing warmth. And they do warm you. They warm the muscles from your head to your toes, and you feel like you just might make it through another day, because Little Monster has gone to sleep. He cannot overcome the one who decides to overcome him. And we can all overcome if we put one shaky foot in front of the other and take another step, and smile. Because that’s one thing Little Monster didn’t count on — to see a beautiful smile on a face he turned to stone.
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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Comments
Deborah Lynch
"When the Little Monster’s Game of Parkinson’s Disease Is Thwarted
Jan 24, 2018 09:00 am | Sherri Woodbridge:
Sherri,
I wanted to Thank You Very Much for your excellent article. It described my PD and symptoms feeling to a tee. You explained it all so well I cried. Finally someone else feels just like me.
I sent a copy to my adult daughter. Her reaction - "Wow she hit the nail on the head."
Again - Thank You.
Bless You and Everyone
Suffering with PD.
Sherri Woodbridge
Deborah -
Thank you and I’m so glad it encouraged you!
Deborah Lynch
You are so welcome.
I'm 63 just recently 2 years ago correctly dx'ed with PD. I had polio as an infant. I kept telling all the Dr's and Specialists this is completely different than post polio syndrome.
I finally find the correct Neuro Dr. from a referral. It took some time and correct combination of meds to help with progressing symptoms. Yes my toes are curled under Dystonia dx.
Again, Thank You.
Deb
Sherri Woodbridge
Deborah - thanks so much for your comment!
Dave Kelly
I too want to thank you for your article.
Your words are concise and easily understood. I am too wordy and confusing to me and those around me.
I was miss diagnosed 12 years ago and on received an accurate one of PD two years ago. I am now 71.
I still get around mostly like you. i also have low blood pressure issues from the Pd which makes for an interesting day.
However I still walk go camping year round and love photography as a was to share with people that we have a creator. And give Constance thanks to my wife, who has to put up with it all. Even winter camping. I also find that I act silly and make fun of myself a lot. Some people at church don't know quite what to make of me. I am part of the welcoming to our church.
So thank you I don't feel so out of place.
Sherri Woodbridge
Dave - thank you for your commmens. I can relate to it very well. The misdiagnosis for over 17 years, Photography, faith, and more. You can read my story here: www.parkinsonsjourney.com
Remember - you’re not alone! -sherri
Dave Kelly
Thank you so much Sherri,
If you were to visit my website you will see my story that came as a precursor to Pd on my about page.
There is also in my case some cognitive impairment and low blood pressure problems that make it a challenge to not pass out and breathing and fatigue struggles.
As you know most of this is not seen nor understood by me, some doctors and many of my family and friends. How do we address all of this?
Sherri Woodbridge
Dave - I subscribed to your blog so I will be reading up on you! :)
Addressing it all? One thing at a time until we’re heard. It’s been a long day. Maybe I’ll have a better answer tomorrow! Don’t give up!
Deborah Lynch
Hi Dave
Thank You for the info on your blog.
Deb
Deborah Lynch
Hi Sherri
"Remember – you’re not alone! -sherri"
Thank You for stating that because that is exactly how I feel.
I'm active as much as possible even push myself rest than active again. I don't want to waste a single day.
I will be 64 in April. I feel like a little old lady in my 80's. I use a cane to get around bent over mostly when out but my activities are becoming less and less.
My family sees these signs but not how I must push myself even for daily chores. They don't see or understand the many emotional or physical pains they can not see. I think it is impossible for them to do so. I try to explain the PD process to them but they say Im doing so good. I refuse to complain about it all. I stay as strong and positive as possible.
I think only someone or
others going down the PD road and journey can fully appreciate or understand what I and others truly totally feel with our PD.
Deb
Sherri Woodbridge
Deborah - thanks for your thoughtful comments. It’s nice we are in this together!
Tera
Had anyone been previously misdiagnosed w/MS?
Deborah Lynch
Yes I have until I received a referral to a Neuro Dr. specializing in this field of Neuro diseases at a large teaching and research hospital. I was seeing a general Neuro Dr. that put me through all the usual testing. After about 6 months or more and trying all different types of rx's
with me getting worse. He finally said - I don't know - I don't know how to help you.
PD and symptoms do mimic so many other Neuro diseases it's very difficult to diagnose it with no test available for a definite - Yes.
I think many Dr's are scared or worried to give a diagnosis of PD without a specific test for it and no successful treatment for it just rx's to help with symptoms.
My new Neuro Dr. was willing to sit down with me go through it all again and rule/out more by testing the first Dr didn't do.
She is a very caring concerned specialist told me dont worry I will help you. She did make the correct diagnosis after slowly trying me on different combo's of meds. I was still progressing with worsening symptoms - dystonia toes now curled under - using a cane etc...
she added PD rx followed me closely seen the difference and helped by it.
I think many people receive a late or wrong diagnosis for their PD.
Deb
Sherri Woodbridge
Great comments! Thanks!