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There's much I don't understand about this!

I'm so sorry to ask any of you about this. I am not my grandmother's caregiver nor am I even able to see her right now due to the distance between Texas and California and obv. due to COVID. I recently watched a TV show (which obv. isn't reality) about this disease. It led me to do research online and watching the most credible videos I could find on YouTube.

My grandmother was diagnosed with Parkinson's over 30 years ago around age the age of 60. It came years after she was amazingly able to survive the passing of both her husband and youngest son (my father is the oldest of her 5 sons) in separate incidents.

I've read that there are many potential causes - including hereditary ones - that are theorized to cause the loss of dopamine, that as I understand it, is why people develop Patkinson's. I may not understand it all correctly. I was around the age of 9 when my, now 91-year-old grandmother and COVID-19 survivor, was diagnosed with this condition.

I've watched her decline over the last 30 years but it hasn't been as crazy as I'd thought. She had tremors and eventually acquired other symptoms - needing a walker by 75. She traveled to Alaska on her on own bc she wanted to on her 80th birthday. Her last trip was visiting my parents, brother & me in CA six years ago at age 85. Maybe I was just used to it but her Parkinson's didn't seem to put too much a hinder on her quality of life. She stopped driving voluntarily at 88 because she was involved in an accident where the other person was ruled to be at fault.

It has definitely not affected her brain. She had voluntary heart surgery at 89 (wanted a better quality of life despite the risks that come w/anesthesia) and was up & walking the next day. My grandma is nothing if not a survivor & a fighter. She's a badass.

We've never been close despite my being her first grandchild. She now has 7 great grandchildren. I was my mother's mom favorite even though I wasn't the first & it was no secret. She passed over 2 decades ago, the same year my best friend died of cancer.. Im grateful for every moment I've spent with all three of them & due to COVID I'm afraid that I may never see my grandmother again, she may never meet my husband..

She has zero cognitive impairment. She moved into a retirement community bc of a fear of falling in the shower due to Parkinson's - again on her own volition due to her (legit) fear of falling in the shower while living alone in the same house she'd raised my pops in - in a small East TX town.

From what I've read people with Psrkinson's should be dead after living with it for 30 yrs. They should be depressed or worse developing Alzheimers as well as being like I've been my entire I've - prone to pneumonia.

I'm sure no one can answer my many questions I've collected over the yrs ... but I know I'm lucky to have my grandma who even after all she's been through in her life including beating COVID back back in April. It took her months in the hospital & more after to recover mentally. But she is now back to where she was before (which is honestly having a better memory than both my 70 year old parents) mentally.

I'm not even sure what I'm asking here but I don't understand how she has persisted this long while younger people suffer? Don't get me wrong, we may not be super close but I look up to her as being the ultimate badass & of course I love her very much!

But how is it possible that she's still the same with a few exceptions as the woman I knew prior to her diagnosis. How is it possible - although I know she & my family are lucky that she's done so well for over 30 years, I'm extremely grateful. I love her very much.

What is the % of people who have lived this long with Parkinson's esp without any neurological complications & who could beat something like COVID?

I do not mean to be insensitive towards any of you or your loved ones. Ive lost many to other diseases/disasters and understand seeing someone you love go through and be succumb to a disease as bad as Parkinson's.

I am just trying to learn more about Parkinson's and wonder if my grandmother is lucky? An anomaly? Or what? Sorry to bother all of you but you all have such a larger understanding of this this disease than I ever could. I probably should have really wondered b4 today but better late than never.

I know my grandmother has had it rough both b4 and after being diagnosed w/Parkinson's but how did she make it 30 yrs and has been, from what I've heard & read, honestly doing relatively well for someone who's had this disease for 30 yrs? And what can I do to help, if anything, as its obv. been a lot harder on her than I've really known & I'd like to see her again one last time once it's actually safe to travel after COVID .... THANKS!

  1. Hi baseballjen21 - Thanks so much for sharing here! You really painted a descriptive picture of your grandmother and her Parkinson's journey. She does sound like quite a fighter! The fact of the matter is that Parkinson's looks very different for each person -- some people have rapid onset of symptoms while others have mild symptoms for decades. Regarding some of the points you made above, PD is associated with a loss of dopamine in the brain (https://parkinsonsdisease.net/basics/). The exact causes of remain unknown, however, there are some risk factors that have been identified (https://parkinsonsdisease.net/basics/risk-factors-causes/). Thanks agin for joining the community and sharing more about your grandmother. I hope this helps! - Chris, ParkinsonsDisease.net Team

    1. What a lovely granddaughter you are to show such concern for your fighting grandmother. I was diagnosed a couple of years ago, and I too fight it even though things are more difficult to do. I have just revamped some old wardrobes by myself, and have painted much of the house at the age of 73 this year. I do think it’s your mindset with this illness as my mother-in-law had it and had some of her daughters spoon feeding her which wasn’t needed at all. I for my part even though you have tremors and feel uncomfortable most of the time will keep a positive attitude because I have a granddaughter who had her bowel removed last year at the age of 14 through suffering Crohn’s disease since she was 5. This is suffering to me as most people with PD have some quality of life. Can I ask you to give her some slack as she may not be feeling great most days ? You sound like you have her back and that’s great from a young person. Your story has encouraged me to keep going so thank you very much.

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