Joy or sorrow … perspectives

This is the statement made…and questions posed which triggered the conversations which follow:

“You may judge yourself and others every day without realizing it. Like many members have found, living with Parkinson’s Disease is an exercise in frustrating moments. You may blame yourself when you look in the mirror, drop something, or falter with a simple task. The problem is when you let these internal judgments shape belief in yourself”

“Do you recall a time when you were particularly critical of yourself? What are you doing to show yourself kindness in those moments?” The following 10 excerpts were in conversation in response. Some made me smile/others made me cry.

“typo (it’s all PD’s fault; it couldn’t be me!) “slap stick comedy” not “slap sick comedy” πŸ™‚

” I record meditations and coach others on critical thinking. It’s important to know that our brains (as PD survivors) believe what we tell it even more than what others say, so being kind to your self is important, if not critical.” πŸ™‚

Laughing helps. If I drop something, or do something foolish, I can laugh at myself and try again or my husband helps me. Sometimes it does look like Keystone Cops or slap sick comedy! My laugh helps us both feel better and I go on from there, changing my method just a little bit so that it works for me ” πŸ™‚

“The topic is very important, I think that the majority of people with PD, has been blamed or judge their self for any reason, I used to blame my self because of a feeling that I have failed to my husband and my children, also I was in my house all the time because I did not want my friends to see me. I did not go to restaurants because sometimes the food falls from the fork. I fight with my mind until I realized that due to my self pity I started to lose friends and my family did not count on me to socialize because I will say NO. …After some time a decision to act as a normal person and I start ignoring PD, I realized the love of my family and friends.”

“I have a somewhat different point of view (I have spent my life in that role!). I deal in expectations and my approach is simple but difficult: Did I do the best I could at that point in time? If the answer was yes, then there was no recrimination or feeling of shame. … If I have a weakness, I move to address it and improve my performance. If I simply lack ability (zero athletic ability, for example) and lack of that ability make it impossible for me to perform, I don’t waste time wishing I had it, I move on to something I CAN do. …. I feel you should always be your own most exacting source of criticism – not to judge yourself, but to maximize the abilities you have. You can always improve your skills, and that’s part of the fun. ….. Many people have deemed me competitive but my competition is with myself for the most part. I like to win but I’m not cast down if I don’t – but you better bring your A game when you come.” πŸ™‚

“Very aware of my Speech difficulties and very frustrated sometimes I talk
fast or voice fades… after a while people don’t want to talk with me. Have had speech difficulties for past 6 months very frustrated… ready to leave society and be a recluse . ” 😦

“Hey, don’t become a recluse! I like myself but if I only had myself I would get pretty bored. My husband tells me I’m talking Japanese or I need to use my big girl voice. Then we laugh and go on with whatever we were doing. I am a Christian so I know that God will be with me no matter what. Just keep your chin up and laugh at things that no other you.” πŸ™‚

” I have PD, Osteoporosis and osteoarthritis. Some days are a struggle I cannot fight. Then I have a day like July 20th. My husband and I have a deal, whoever cooks dinner the other cleans up. It was a good day Friday. We had some fresh green beans and yellow corn. I had some Polynesian pork-loin. My husband helped me prepare the meal and was going to share the cleanup. Our 5 year old grandson was here and asked his Papaw to play a video game with him. I listened to the two of them laughing and playing and a joy came over me and I cleaned the kitchen without a broken dish or any other dropped objects. My husband came into the kitchen to help me and was surprised to see the kitchen clean and me sitting at the kitchen table smiling. I told him that God had given me the grace and joy of his time with our grandson to remind me, that I can still have beautiful moments that PD cannot take away. Always hold on to the joy no matter the size or timing and PD will not win the battle that day. ” πŸ™‚

“My little grandsons, 5 and almost 3, were just here from Colorado to visit with Mom and Dad. I have often ‘kicked” myself for not being able to run and play with them like their other grandparents. They have often resisted being close because I can’t do things they like, and I’m slow. In an attempt to leave them a little part of myself for when they’re old enough, I started writing them little poems which I videotaped with me reading to them, then I would email it to my daughter-in-law. This time when they came, they not only knew me “well”, they kissed me, hugged me, and kept saying “I love you, Bakey”. Now they’re even asking me for certain subjects to write about, usually letters from the alphabet, like “x”; I wrote, I love you x-tra very much because you’re x-tra special…etc. Apparently they get very excited because already they understand. I finally realize, to my pleasure, that I have something x-tra to give which other family can’t. I feel much more at ease with them, and with something I can offer. “

“I know that I am my harshest critic. I probably will always be my harshest critic and, quite frankly, I don’t think that there is much that I can do about it. I’ve tried. Believe me, I’ve tried. I understand mindfulness and taking joy in living in the moment, but the monkeys setting up their circus in my head keep me from wondering about what might have been. Yesterday is almost an illusion put together with smoke and Michael and my dreams are filled with a man that I recognize to be me and then I wake up and a stranger fills my mirror. I still find joyful moments, but the work it takes to just keep even is exhausting. We read the Serenity prayer in church yesterday and I almost cried. “God, Grant me the courage to change the things that I can change, the serenity to accept those things that I cannot change and the wisdom to know the difference.” Today, I couldn’t prepare my own plate for dinner as my hand was shaking and unable to lift a slice of beef and transfer it to my roll. I choked on the sandwich three times, but I eventually was able to finish it. I guess being judgmental doesn’t help me to help myself, but it’s tough.

I wish that I could share an inspiring story tonight. I wish that I could be the positive answer guy who always spins feelings into golden threads of revelation, but tonight, living in this moment, I am tired. I know I shouldn’t post when I’m so tired, but anyone who tells you that you shouldn’t be so hard on yourself needs to know that sometimes…..some days…..some sleepless nights……I secretly remember the days before Parkinson’s came knocking on my door. ” 😦

I shared these comments from members of a tribe/team, for those who are struggling, to see they are not alone.

Author: suerosier

In May of 2018, I was diagnosed with Parkinson's. After researching, I believe the symptoms began to manifest themselves years prior to last year. The purpose for my blog is to share what I have learned (with an index) to save others time as they seek for answers about, symptoms, therapies [and alternative things to try], tools I use, Parkinsonisms, recipes, strategies, clinical studies, words of encouragement or just enjoy the photos or humor.

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