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Saturday, November 12, 2011

Helpful Advice for My Friends and Family

Dear friends and family,

With the big holidays approaching, here is some advice from a person living with Parkinson's Disease to all my friends and family who don't know exactly what I go through each day.   Please invite me to join you for whatever you have planned.  Don't assume that I won't feel well enough to attend, but please try to understand why I MAY say no.

I have difficulty with fine motor skills, so please stop and think before you ask me to serve liquids or help put away those crystal wine glasses, there is nothing humorous about breaking glass or spilled gravy.  I have trouble cutting meat into bite size pieces and maneuvering peas from the plate to my mouth, so I do much better with finger foods and stuff that won't fall off the fork when my hands won't cooperate.  I feel uncomfortable eating around strangers, they tend to stare, and I know they can't help it, I find myself staring at people, too.  

I really should take my 'dopamine' medicine on an empty stomach.  Pretty much my entire daily routine is dictated by taking my medicines.  
Here is a sample day:  
4:30 am  woke up, took empty stomach, first thing of the day meds
6:00 am  ate a banana, need the potassium to prevent foot cramps
6:45 am   took dopamine medicine, stomach should be empty now 
7:30 am  ate some crackers, to settle my gurgling stomach
8:30 am  walked with neighbor
9:00 am  finally eating my breakfast, a big bowl of cereal
12:30 pm   ate lunch, which is usually my biggest meal of the day
2:00 pm   take dose of dopamine medicine, stomach empty again
3:00 pm   took a nap, have been up 11 hours already  
6:00 pm  ate dinner, which usually consists of a salad and sandwich
9:00 pm  ate a snack and another banana
11:00 pm take last dose of dopamine and go to sleep 

As you can see, eating a huge meal at 2 pm will just throw my day out of whack, but sometimes I do it anyway. 

I can go from "on" (which is when my meds are working their best and I feel my best) to "off" (which means they aren't) in 10 minutes or less.  This explains why I walked into the restaurant just fine, but moved slowly going out. 

Stress and excitement aggravate my symptoms.  Even good stuff, like weddings or other emotional parties can adversely affect me.  An argument or shouting will have me shaking from head to toe.  

This is why I usually spend the holidays with just my Wonderful Husband.  We have a simple meal and a very calm day.  It's not that I don't enjoy your company, it's just that I do better in more casual situations with smaller groups of people.

Happy Holidays,

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from or your favorite online book seller. Thank you and have a Happy Parkie Day!


  1. Very good post, Bev. Thanks for being bold. I would want to know this if I were the family member or friend hosting a holiday get-together.

  2. Hate going to restaurants.

  3. Bev this post helps me understand my husband better He is not talking about how and what he feels so I have to assume rather than know Now I know why he occasionally hesitates to visit relatives and friends. Thank you. Endurance

  4. I find taking my sinemet around an empty stomach quite challenging thanks for your reassurance that I'm not alone

  5. That is very helpful advice for friends and family with a loved one with Parkinson's- thank you for the article!
    Bill Ray

  6. As a hostess, I find this advice very helpful. Don't assume what your guest will decide and why. No one wants to be on the uninvited list.

  7. My friends are always thinking of me during the holidays. I'm good at adding sprinkles on ice cream.

  8. you hit it on the head. I can't cut steak anymore, so I don't order it if I'm out with my friends-they call me a cheap date because I prefer a hamburger!

  9. As a newly diagnosed Parkinson's patient, this is great information, and describes exactly what I try to communicate to my friends and family! Veronica

  10. Good to know because those who don't suffer from this terrible disease don't realize what is happening and how to deal with it.

  11. Thanks for sharing this. The echoes in my life are resonating loudly. I am affected by emotional events both happy and sad. I can go from on to off in seconds. I feel like the little girl with the curl in the middle of her forehead When I am on my shaking is almost unnoticeable and Is very "good" But when I am off my shaking is severe and it is "horrid"

  12. Hey Bev! I just wanted to put it out there that you are a rockstar!! You definitely help my living with Parkinson’s a little bit easier. I figure that those that can shake together can laugh together! Have a wonderful day my Parkie compadre! Curt

  13. How did how did you find out bananas help you with cramps

    1. A physical therapist recommended bananas, they are high in potassium.