10 Things People with Parkinson’s Love, Loathe, and Long for
Patients with Parkinson’s disease have pet peeves they loathe, treasures they love, and things they want. Following are some of them. Feel free to add to the lists in the comments section below.
10 things Parkinson’s patients loathe:
- A doctor who obviously couldn’t care less.
- Trying to do something with disobedient fingers.
- “Da plane, da plane!” (The pain, the pain.)
- Ignorant questions and comments someone makes about the shaking.
- Noticing symptoms are increasing or worsening.
- Feeling like a burden.
- Being unable to do things they used to do, such as tying shoes or buttoning a coat.
- People thinking they’re mad or sad because PD borrowed a smile and won’t give it back.
- Falling.
- Finding it hard or impossible to handwrite a letter or note.
10 things Parkinson’s patients love:
- Other people with PD who understand firsthand.
- Not shaking.
- When meds are working well.
- When doctors treat them as if they matter and don’t need to rush.
- Dopamine!
- Good days.
- Supportive family and friends.
- Slip-on shoes and slippers.
- Massages.
- Support groups.
10 things Parkinson’s patients long for:
- To feel good.
- To smell dinner or the flowers along the path.
- People to believe that they aren’t faking about having a chronic disease.
- Others to understand that even though you can’t see it, the disease is always quite visible to its carrier.
- More dopamine. We gotta have more
cowbell. Er, dopamine! - To not tremble, but instead, smell with their noses and taste with their tongues.
- To make others aware of the struggles people with Parkinson’s face.
- A soft bat to hit others over the head with when they make thoughtless comments.
- To find a medication that doesn’t knock them out for half a day, but instead, knocks out PD.
- A cure.
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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
George Hostick
The listing of likes and dislikes is right on the money
Thanks
Sherri Woodbridge
Thanks, George!
David and Darcy
My husband has Parkinson's and we follow this website. We were amazed to find that we have and are facing the exact same "10 things Parkinson's patients loathe". We thought we were the only ones! Of course the VA neurologists have made it their mission to find a differential diagnosis instead of discussing treatment and symptom management. But they also don't want to recognize that all the other medications prescribed (and taken) did nothing to alleviate the symptoms except for the Levo-dopa. Go figure. It has been an uphill battle which we continue to press forward. So the validation of your post means so very much to us. We aren't crazy after all.
Yours in brotherhood/sisterhood with PD....
Sherri Woodbridge
No David and Darcy, you aren’t crazy and if you ever have questions or want to vent, I have a listening ear. Hang in there. You’re not alone.
Carolyn Ibberson
I would love people to understand that it is not just people over 65 who get it, young people develop it too, i started with symptoms at 41, i wasn't diagnosed until i was 46. Those 4 years of my life were terrible. I thought i'd gone mad.
Sherri Woodbridge
Thanks Carolyn, for being vulnerable and sharing part of your story.
Fred
Loathe: Trying to toothpaste on the brush with out it flying everywhere
Love: How creative it makes me
Long for: stem cell cure
Sherri Woodbridge
Fred - thanks so much for sharing!
Harvey
Spot on
Sherri Woodbridge
Thanks, Harvey.
Edith Pashler
My husband had Parkinsons (unforgently passed away last month).
I miss him greatly.
None of his medications were helping him only got worse and Demensia set in. His greatest wish was always that he could walk again or got some mobility back at least. My husband must heve been in some great pain at times or most of the time and he never complaind, not very often did he take any pain killers.
Robin you were the very best I ever could have Love You R.I.P.Xx
Sherri Woodbridge
Edith - thank you so much for leaving your comment in the midst of your pain. May you find joy in each new day.
Edith Pashler
Thank you Sherri
Terry Reilly
Hi Sherri !! Thank You for writing about Parkinson’s and the effects it has on us ,and our families. I would like to say that a supportive family is so very important !! Also I won’t be doing as good as I am without my incredible doctor!! She listens and if I call her office with a concern, she calls me back that same day to discuss it !!!
Sherri Woodbridge
Thanks, Terri, for sharing your positive experience!
Brenda McClain
Terry Reilly~~we should all be so lucky to have a doctor like yours!
Brenda McClain
I have to add to the loath list: foot cramps!!!
Ira Ramsey
My heart is broken. Today my wife of 51 years was admitted in a place for those with Dementia. Though I have had PK for several years I took pride in being her caregiver. But my PK has gotten so bad I just could not provide the care she needed. I do have one major regret, I wish I had been the husband and lover she deserved.
Donna
Such a sweet, well written article. Thank you!
Helen Lucaci
I have been diagnosed with this pain in the bum of a disease called Parkinson’s disease. I refuse to give it capital letters as it does not deserve it, but the silly computer thinks it does and always gives it capitals! Just my ranting ,sorry. I am 63 years old now and was diagnosed at 50. My neurologist is truly wonderful and always has time for me. The falls are truly frightening and really upset me. I do try my hardest not to fall but the body will not co operate.I have had two rotator cuffs repaired, a big toe fused and in a week I am having my right ankle fused. After I have recover from this ,I will be having a knee replacement . Two years ago I had 9 falls in the year. I thought I was doing well until I had 5 falls on one day . I am so very scared as I know how much it hurts. I do have good supportive friends and family but I feel such a pest.
Just keep praying !
Sherri Woodbridge
Helen - My prayers are with you!!!
Rosemar Balister
My sister June had Parkinson's disease. What helped wasa poncho I knited for her. She could slip it on over a turtle neck and it gave her a feeling of independance. I would like to start Ponccccchoes for Parkies. Each new one I knit is given to a sufferer who is alive in memory of someone who died of the disease. Do you think this is a could idea? There are lots of knitting groups involved in worthwhile projects.
Sherri Woodbridge
Rosemary - what a wonderful idea! I say go for it!!!
Shirley Hensley
That sounds like a great idea! Thank you, could you let us know when they will be available? Shirley Hensley
Debbie Feighner
My dad passed away 21/2 years ago from PD. He was 86. Mom took care of him as long as she could but the last year or so, was unable because he was going downhill so fast. My dad was 6’ tall and when he passed only weighed 119 lbs.! He was so frail they had to put him in a lift to get him from his bed into a wheelchair!! I saw them doing that one day, and you could see they were trying so careful not to hurt him, but he actually cried out in pain. I was glad mom wasn’t there to see it, as I broke out in tears. I’m 63 now and besides having Epilepsy for 47 years and other medical issues, I am now DX with Parkinson’s Like Syndrome. I’m married and my husband does all he can but I fear a nursing home or Assisted Living will be my next step.
As my seizures, (Grand Mal) are not controlled with meds.
My mom still living at age 85 in her own home is quite disturbed about all of this. I miss my Daddy much! Thanks for listening, and if you have any info about my DX, could you pass it along?
Debbie/ Fort Wayne, IN
Bea
The wonderful man I have loved for most of my life is in the final stages of Parkinsons. I dont know what else I can do but be present as often as I can. I am loosing him and I am so sad for both of us. Just thoughts.
gopalakrishna bk
very Nice . In my Opinion , care giver must have these qualities patience,anxious round the clock informative now I will do it ,service overall SMILE