can i suggest there be less mean responses too one another and myself, im late stage and after many yrs and pd alchemy vs allopathic medicine dont appreciate name calling etc such as "you and yourr ideas are irrelevant"" just a thought and my opinion no cite available. cheers i hope you all have a good day! cheers.
Meanness: can i suggest there be less mean... - Cure Parkinson's
Meanness
Written by
beehive23
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29 Replies
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Completely agreed, but you just may need to learn to ignore certain members here challenged with less than optimal emotional intelligence despite repeated corrections by many, but they do offer other good contributions at the same. Please don't take it personally.
im learning....thank you for your insight! i will takke your advice....cheers!
Just imagine having to live with them, and feel sorry instead. ; )
hehehehehe oh thats great.......hey......it works hahahaha....
Some have permanent bad hair days...
Totally agree!
There are so many lovely, intelligent, helpful people here. I think we owe it to ourselves to not react to the ‘mean’ ones, and merely reply to their post with a single word like ‘whatever’ or ‘really?’
Don’t let the bullying stop you from posting, you are the stronger one if they resort to such tactics. Sadly, they will never change. Sadder still, they are probably totally unaware that they are like that.
Maybe it’s a lack of emotional intelligence on their part, as rescuema has mentioned 😊
Well said about the many lovely, intelligent, helpful people here. Being sick with pd should make all of us want to support each other, not the opposite. Especially knowing that stress worsens our symptoms. How can meaness not have a negative impact on pd?
My sentiments exactly! 😊
If I see something like, "You and your ideas are irrelevant, " I think I'd say to myself, "oops, no good info here." I haven't run into that yet, but thanks for the heads up.
Beehive, your thoughts are much appreciated. I second your sentiments.
beehive23, my heart goes out to you in late stage. My father also had Parkinson's (like I do) and I watched him deteriorate through that last stage. Fortunately his mind stayed sharp and he gave me all sorts of life advice. I think what was hardest for him was the thought of not being around for my sister and me to be sure we were okay. He had a strong will and was 93-1/2 years old when he died.
I am here on this forum to share my experiences, if they are helpful to someone, and benefit and learn from the experiences of others. Parkinson's does not change your demeanor, unless you consciously work at it, i.e., gratitude vs. suffering. I'd venture to guess the mean-spirited, didactic posters have been like that their entire lives.
Parkinson's is a designer disease. Our experiences will vary. It's good to keep that in mind. And just because something worked for one of us, does not mean it will work for all of us, and some of us may not be willing to try something for various reasons. Supplements are costly and not everyone can bear those costs, for example.
Above everything else, be kind.
Hi PDGal. Please share more about your family's journey with Parkinson's. I come from a huge family and I am the only one i know of that has this terrible disease. I am only 55 and was diagnosed at 48. I am just being told by doctors that I don't need to be worried because it is a very slow moving disease.
Beehive, please share more about your story as well.
pdpatient, Let me first say I'm sorry for your young onset Parkinson's. I have also heard young onset progresses more slowly.
I'm happy to share my story. My father was not diagnosed until he was 80 years old, in 2001; I was diagnosed in 2012 at 57. My father was 90 by that time and living in an assisted living facility with my mother, who had Alzheimer's. He was a tough man, for sure, and insisted the Parkinson's was not his real problem. He'd had a stroke at 85 and another one a few years later, which necessitated the use of a walker. Before that he used a cane when he went out, a carved wooden one we told him gave him character, that I still have and hope I never have to use. I'm pretty sure he did need the walker for Parkinson's--his first symptom that I noticed was balance issues. He couldn't stand still without leaning on something. But I allowed him that belief. My first recognizable symptom that something was amiss was slowness of movement.
When my sister got married (before his stroke, when he just used a cane), the elevator was broken in hotel we stayed in. The only rooms available on the first floor had one single bed, not suitable for him and my mother. It was an old NYC hotel with high ceilings and a wide marble staircase, and I told him to wait for us in the morning to help him walk down for breakfast. Of course, he was too impatient to wait.
After his first stroke recovery--he'd worked exceedingly hard in rehab and decided to take the car out to see if he could still drive. I wasn't sure whether to be horrified or happy (that he still had his determination). Fortunately for everyone on the road, he decided to give up driving.
He moved to the assisted living facility around 2009 so I could help him and my mother. I realized when she could no longer write checks to pay their bills (for him to sign) and I took over writing them that writing was something else he could no longer do. Eventually he couldn't hold the pen to sign them either. I would take him to the neurologist every other month, but because of his age there was little the doctor could do for him. By then he did have a tremor and was finding it difficult to eat with his hand shaking, but the doctor said he was maxed out on med dosages and was afraid he'd have hallucinations if he gave him any more.
Being with my father, I also realized how the location of handicap parking spaces and ramps are made for wheelchairs not walkers. There was one shopping center where we went several times to get his eyeglasses, and a 10 foot walk from the car to the store became 50 feet uphill because the ramp was so windy. Eventually he did end up in a wheelchair as he deteriorated and he became pretty miserable at times.
My father willed himself to stay alive to be sure our mother was looked after; of this my sister and I are certain. When she was actively dying, a hospice term I learned, he went downhill quickly. The nurses weren't sure he could survive the grief due to his weakened physical state. But he lived 8.5 more months, the last 4 totally bedridden. By then his chest was the size of a 12 year old boy's and the aides were feeding him. He had one he was particularly fond of and she'd been tough on him (before he was bedridden), which was what he'd needed. The facility he lived in was great--he got physically therapy several times a week--more for social interaction than physical improvement by that time. He was outgoing and friendly (if he liked you; if he didn't--that's another story).
I realize this is anecdotal; I haven't thought of much of it in a very long time. The last 4 months were particularly tough. He was completely bedridden--I thought he was too frail to be helped in and out of bed and the nurses concurred. And near totally rigid.
In response to Phusson's comment below, when I was diagnosed at first I wasn't going to tell my father. I figured he had enough to deal with. But then I told him in the car, which is where I'd always had difficult discussions with my children. His first response was to ask, Will you still be able to take me for doctor's appointments? When I assured him I would, he was quiet for a long time. Then he said, I'm really sorry. We never talked about it again, but then that was my father and his generation.
I'd welcome hearing yours and anyone else's story as well. I know this is long.
PDGal, that is really a very touching story and straight from the heart. I admire your dad's resilience and I have glad he got to live a long and reasonably good life. My dad died last year at 82 and although he was slowly deteriorating due to a series of small ischemic strokes, his death was just too sudden and heartbreaking for me. I had been unable the visit him for the previous three years because my Parkinson's was really bad and I was responding weirdly to Levodopa. I was unable to walk straight and I was in constant misery.
When I heard that he was in the hospital, I finally steeled myself to go with the help of my son and a wheelchair and ended up seeing him a few hours before he died although he was in a coma. I have been inconsolable since.
I am currently writing a memoir about this and I will be sure to share some excerpts as I make some progress.
Thank you so much for sharing.
Thank you for sharing. I am sorry you've been in such emotional pain since your father's death last year and hope you come to terms with your suffering through your writing and find self-forgiveness and peace. I have been practicing Mindfulness for the past 7 or so years and it has helped me enormously. So did therapy, which I started when I was first diagnosed, and I also write.
My mother didn't know who I was for about a year before she died. She was cognizant of nothing. When she was under hospice care and actively dying, in her room with my father at the assisted living facility, she was basically in a coma state, seemingly unaware of her surroundings. Medically, she was deemed to be 'non responsive'. One afternoon when I was alone with her and sitting on the bed beside her, she had a few minutes of lucidity and acknowledged my presence. I've written about this experience and if you're interested, message me for the link as we're supposed to preserve our anonymity here.
I tell you this story to consider that your father knew you were there. I admire all the energy and effort it took for you to be there. My mother lived for 8 days with no food and no water; original hospice nurse had given her 2 days. When they asked if she could be holding out for something, I responded, "my birthday, but how would she know?" These experienced hospice nurses all said, 'you'd be surprised what people know.
He must have been very strong. I'm not sure how hard it would be if my daughter had this too.
I responded above, last paragraph, adding here that he was a tough man, but by the time I was diagnosed, he'd had the disease for 11 years and was dependent on me to take him for doctors appointments, write checks to pay his bills, shop for him and my mother. At first he didn't get it that I ordered online and had things shipped to him. Him and my mother loved to shop and it took a while for it to sink in that I hated going to the stores. It got so he'd say, Can you call up Amazon and tell the I need . . .
I think chronic illness eventually draws people inward, emotionally and spiritually.
I wholeheartedly agree. Need more love & understanding
Try to not take it personally. This is meant to be a safe place to offer support and receive support if people can't be kind they have the option to be quiet because who says their opinion is any more than that.
Have a lovely day knowing others have kind thoughts for you. X
thank you!
This is no place to be mean
Thank you, beehive. You have always been kind on this forum and never hesitate to leap in and help me when I have questions. Not everyone is a class act like you are; perhaps meanness arrives from a place of emotional pain or a place of fear I don’t know. But we shouldn’t let anything like that affect us. I guess we need to try to tune them out; they don’t deserve our attention anyway. You just stay classy as you are!
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