Bas Bloem: “Is there an upside to having PD?“

[Esperanto]

mediflix.com/topics/parkins...

m.facebook.com/mediflixtv/v...

A team of researchers, including four individuals with lived experience and two scientists, posted a call on social media for experiences with "silver linings" in people with Parkinson's. They were interested in both positive and negative experiences. The researchers received 138 responses, of which 113 (82%) were positive, indicating that these individuals had indeed experienced "silver linings." However, 25 (18%) did not have such experiences. The majority of responses (85%) came from patients, 7% from neurologists, and 6% from caregivers.

So, what were these positive experiences? Most participants mentioned two or more positive changes, such as living more consciously, finding a new focus in life, better coping with the disease, engaging in new activities, adopting a healthier lifestyle, and improving relationships with family and friends. The majority of responses were positive, which was inspiring.

However, not all participants experienced a positive aspect. 19 of them felt that their lives had worsened after the diagnosis. Some were angry, feeling that they had not asked for the disease. Factors such as depression, disease stage, or the presence of other illnesses may have played a role, but this study does not provide clear insights into these aspects.

Furthermore, the group of participants in the study was not representative of the entire population of Parkinson's patients. The participants may have had better healthcare, improved living conditions, and/or greater access to social media. This needs further investigation. Nonetheless, this study provides perhaps a basis for further discussion. The diagnosis of Parkinson's disease turns your life upside down, but I personally see that it is not always in a negative sense.

NPJ Parkinsons Dis, 2022 Mar 3;8(1):21. doi: 10.1038/s41531-022-00283-1. The silver linings of Parkinson's disease, Araceli Alonso-Canovas, Jos Voeten, Omotola Thomas, Larry Gifford, Jon A Stamford, Bastiaan R Bloem

ncbi.nlm.nih.gov/pmc/articl...

[Hope-full1970]

My silver linings are as follows.....My hero's are different, the disabled, wounded warriors, and one of my favorites, Joni Erickson Tada who became a quadriplegic at the age of 18 and has a huge ministry that sends wheelchairs all over the world for free.

I have learned that my daughter, who is disabled when she doesn't do a good a good job with washing her hair, she's really trying! Now I understand.

I have learned to let go of spoiling my family and always making gourmet meals with no help. Now we all work together,one chops, one sets the table,One does the dishes.

I'm learning to let go of my perfection,and I'm learning to love and care for myself more.I always put others first. Now my health and my family come first. I have learned to say NO.

I am weeding out the friends that treat me different and want to fix me. My real friends make me laugh are silly and have grown with me. They know I struggle but don't focus on it.

Overall I think life is more precious to me. I'm willing to fight for it and thankful for every day that I'm living and breathing. I have come to love and trust my husband and family deeper. I'll do anything for them and that for me means doing all I can to stay healthy.

[bassofspades]

For me, there's a couple of upsides. 1. I don't smell people's stinky farts, and 2. I get the good parking spots.

[justhavefun2 in reply to bassofspades]

You are hilarious! Thanks for brightening up my morning! Those constitute a silver lining for sure!

[bassofspades in reply to justhavefun2]

another upside! You get to chat with some "interesting" people!! Actually, PWP are some of the nicest people you'll ever meet.

[justhavefun2 in reply to bassofspades]

That has always been the one thing I’ve been very grateful for in having Parkinson’s. I’ve been able to visit with folks that I would’ve never had the opportunity to have interacted with. I totally agree – Parkinson’s people are some of the best around!! Hummm… maybe that’s a common denominator for the blessing of belonging to this “club we never signed up for”!? 🙃 😜

[bassofspades in reply to justhavefun2]

Club we never signed up for - good one! I think it was Groucho Marx who said, “I don’t want to be a part of any club that would have me as a member “!

[kipar in reply to bassofspades]

Ah oui les places de stationnement, c'est le top

[Fed1000]

It’s specious, to justify all research failures.

[Fed1000]

It is as if it were an invitation to settle on the disease without fighting, without raising one’s voice against the national health service.

[park_bear]

Similar theme explored here:

Parkinson's Disease A Strange Gift - Jennifer Sullivan, aka Parkinson's Wiggles Project, speaks

healthunlocked.com/cure-par...

[Esperanto in reply to park_bear]

Thank you for the link. Good to re-view your previous post with Jennifer’s inspiring video and some beautiful Silver Linings. Indeed PD, a strange gift…

[LAJ12345]

silver lining is we are both healthier as we have adopted a strict diet and exercise regime. This may prevent us developing other conditions we might otherwise have got if we had carried on with our old ways.

[Getz]

The main positive I have found is that I got PD early enough to do something about it. Sure I have big blanks in my memory but I am fit, healthy, and have focused on a healthy diet.

[Gymsack]

There is no upside, and to suggest that is a laugh in the face of many here who find every single day intolerable and their care givers who are exhausted and at the end of their strength.

In time you will be able to accept it and stop trying to cover it over and invent positives , deal with it , scream if you want, be angry, but dont hide and lie to your self. There is no Frigen up side. It is not called Parkinson's Inconvenience , get ready

Lyrics

There's colors on the street

Red, white and blue

People shufflin' their feet

People sleepin' in their shoes

But there's a warnin' sign on the road ahead

There's a lot of people sayin' we'd be better off dead

Don't feel like Satan, but I am to them

So I try to forget it any way I can

Keep on rockin' in the free world

Keep on rockin' in the free world

Keep on rockin' in the free world

Keep on rockin' in the free world

I see a woman in the night

With a baby in her hand

There's an old street light (near a garbage can)

Near a garbage can (near a garbage can)

And now she put the kid away and she's gone to get a hit

She hates her life and what she's done to it

There's one more kid that'll never go to school

Never get to fall in love, never get to be cool

Keep on rockin' in the free world

Keep on rockin' in the free world

Keep on rockin' in the free world

Keep on rockin' in the free world

We got a thousand points of light

For the homeless man

We got a kinder, gentler machine gun hand

We got department stores and toilet paper

Got Styrofoam boxes for the ozone layer

Got a man of the people, says keep hope alive

Got fuel to burn, got roads to drive

Keep on rockin' in the free world

Keep on rockin' in the free world

Keep on rockin' in the free world

Keep on rockin' in the free world

Source: LyricFind

Songwriters: Frank M. Sampedro / Neil Young

Rockin' in the Free World lyrics © Peermusic Publishing

[justhavefun2 in reply to Gymsack]

Hi Gymsack, I remember reading your posts when I was first diagnosed and you gave me hope when I was so scared. (Thanks for that!) I am so very sorry you are so sick and miserable. I only wish there was something I could do to make you feel better. When you say “get ready“ what are your recommendations? I had a glimpse of what the future could look like when I changed medication last month. I realize that’s not the same, but it is a glimpse and it wasn’t fun. Thanks for your thoughts in helping us get prepared! It’s the scouting way! (I ended with a little humor because “laughter is good medicine”.) Maybe you could start a new chat thread with recommendations, when/if you feel up to it? With much admiration and respect, Diane