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Wednesday, October 3, 2012

Things Not Known about Parkinson's

This is a Letter to the Editor that I wrote, it was published in the Yuma Sun newspaper in October of 2012. You have my permission to submit it, or your own revised version, to your local newspaper. Let's share the facts of Parkinson's disease with our communities.

This is addressed to all the physicians in my community. I have Parkinson's disease. Here are some things you might not know about Parkinson's:

1. Almost 35 percent of Parkinson's patients never get a tremor — that's right, no tremor. The rest may have action tremor and not resting tremor. The tremor may be on just one side of the body; Parkinson's doesn't have to be on both sides.

2. No one is too young to have Parkinson's disease. I know people who were diagnosed in their teens. It is not in our imagination, we are not faking symptoms, we aren't drinking too much coffee or just anxious. There is definitely something wrong. Help us.

3. Stiffness and slowness of movement are common symptoms. Changes in gait and lack of arm swing when walking are telltale signs. 

4. Parkinson's medicines can cause melanoma, so refer all your patients to a dermatologist for a complete skin check.

5. If a patient presents with upper back, shoulder or neck pain that you can't find a clinical reason for, it could be an early sign of Parkinson's disease. Don't dismiss it.

6. Parkinson's disease can affect our heart, and the medicines we take can affect our blood pressure. Your Parkinson's patient might just need their Parkinson's medications adjusted, not another prescription.

7. Changes in the ability to smell may be an early sign of Parkinson's.

8. Sleep changes, acting out dreams, vivid nightmares are all early signs of Parkinson's.

9. Changes in handwriting, letters becoming smaller and cramped are another early sign.

10. Changes in voice, slurring words and speaking softer are all signs.

11. Changes in facial expression or a blank look are signs.

12. Stooped posture or loss of balance is common.

13. Cognitive changes can be a side effect of the Parkinson's medications, so don't just assume otherwise and add another Rx.

14. Adding another medication to the tons we take isn't always the answer — it could be one of the medications we are already taking that is causing the problem.

15. Refer your patients to a movement disorder specialist preferably or at least a neurologist who knows about Parkinson's. Don't try to treat them yourself; Parkinson's is too complicated. I know, I have it.


Beverly Ribaudo




15 comments:

  1. Another GREAT post, Bev! You are definitely making a difference for Parkies by educating your readers with just the right blend of humor and the serious! Keep it up, Girl! :D

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    1. My husband has Parkinson's Disease. I hate the term "Parkin". It minimizes a horrific disease by giving it a cutsie nickname! We just had a discussion about this very thing in my support group and we overwhelmingly agreed that it's demeaning to the sufferer, and caregivers as well.

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    2. I did not come up with the name Parkie, I learned it at a 2-day seminar put on by the Muhammad Ali Parkinson Center. I don't find it demeaning, but I can understand your point of view. YumaBev

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  2. This is good! Thanks for giving other groups permission to use it. (Pat in Regina, Saskatchewan, Canada)

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  3. You say in your intro '...a little disease like Parkinson's...' I don't consider it a 'little disease'. I have had this 'little disease' for over 32 years and am now in the final stages and there is nothing 'little' (insignificant) about it.

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  4. WTG Bev this is totally awesome thank you for speaking for all of us.
    Catherine

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  5. Bev, I hope everyone reads this. Most people assume that Parkinson's disease involves only "shaking and shuffling," and couldn't be more wrong. Thank you for sharing your world and your knowledge. I have so much respect for you!
    Linda

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  6. Great list! I can't believe how much GPs don't know about Parkinson's. Another huge deal is that our symptoms go through unpredictable cycles that can change very quickly. So if you only see me in my 'on' time (around 2 pm, which is when I schedule most of my appointments), I'm not faking symptoms when I go back 'off'.
    Karen G

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    1. Unless you have a Neuro trained in PD they know very little also.

      There is so much medical knowledge required nowadays, I don't see how a GP can even keep up. Parkinson Foundation . org has FREE books that help you to realize, your fate is often your own. Make sure you, your caregiver and family has been educated to they can keep ALL med staff straight.

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  7. I am 36 and have Parkinson-like symptoms for a few years now but have no tremors. I'm simply too young and moreover no tremors. They would never take me seriously, but instead refer me to a psychologist. What's bother me most is my legs, I've also postural instability, both which has take its toll on my confidence.

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  8. Awesome. Still trying to educate my friends.

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  9. My husband has Parkinson's. I have been his care giver. He finally broke his hip in his last fall. He is coming home from rehab this Friday. If I can no longer care for him. Assisted living. He will hate me. I have done everything I could do for nine years. A long goodbye

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    1. Sometimes there is no other choice. I feel bad for both of you. YumaBev

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  10. forgot that PD meds can cause melanoma - my husband a one show up on his arm this past spring - had to go to plastic surgeon to have it removed and on watch every six months with dermatologist now. Thanks for always sharing information things about PD!

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