I didn’t get the memo…

As I prepared to leave the clinical trial, I figured It may take me a while to get caught up on things on the home front, SO,, I have set the dates for publishing the next few “FINDS” that I thought were insightful, interesting or educational. I felt I should explain that I do not spend ALL my time researching. 🙂

FROM ‘Parkinson’s News Today”

“, people don’t usually pick up on my symptoms in everyday circumstances. I’m an advocate for exercise as medicine. I work out regularly and feel that it has helped me to delay progression of my disease.”

“So, what should I do if I find myself in the awkward scenario of running into someone who hasn’t seen me recently? Should I quickly duck down the dog food aisle (although let’s face it, nothing is quick anymore), or endure the next few uncomfortable minutes?”

“Inevitably, the ducking idea fails, and the obligatory conversation begins. How it plays out produces mixed reactions, but primarily a bewildered look of “What?”

It goes something like this:

Unfortunate person who ran into the woman with Parkinson’s: “So, how are you feeling?”

Me: (on the inside: “A rhetorical question, right? You don’t want a truthful answer.”) Aloud, I say, “I’m doing well, thank you for asking.”

Unfortunate person: “Well, you look great.”

At this point, 26 years (or in my case 51 years) of wedded bliss to my husband and having raised three sons (or in my case ten children) who all embrace sarcasm begin to show. I save the following witty response for those who know me well enough not to be offended.

Me: (grinning) “Well, I did not get the memo that a Parkinson’s diagnosis meant that I was supposed to look bad, so thank you.”

Then comes the “What?” look, swiftly followed by a laugh, and the elephant in the room isn’t so big anymore.

We managed to find humor in the chat, which lightened the mood. Everyone felt better. After all, I could have answered, “My meds are wearing off, my symptoms are in high gear, and I feel horrible.” That would not be very nice, so I stuck to the lighter side of things.

“The bottom line is that we cannot duck down an aisle or cross the street to avoid conversations just because people don’t know what to say to us. It is not due to a lack of concern on their part, but rather a dearth of knowledge.”

“Find opportunities to educate and inform others about Parkinson’s. If you can manage to do that with a little bit of humor, that’s a bonus for everyone.”

*** Since preparing this post, I saw an excellent follow up article …What NOT to say. I’m going to schedule it for today, also… 🙂

 

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” 🙂

” 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.” 🙂

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 ” 🙂

“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.” 🙂

“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.” 🙂

” 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. ” 🙂

“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.

Humor

I belong to an online community of Parkies and their care givers. It is a great source for information. [The Invigorated Community] I wanted to share a bit of their upbeat positivity with you. Yesterday, a person asked if others were experiencing brain fog. What follows is a short bit of the responses:

M… Yes, they list concentrating as a symptom. But I think it can get ‘mixed up’ with other symptoms such as depression. 
And the fact is we’re all getting older and that’s just a fact of life. 
Wait…..what was your question?

M… Sorry, I don’t mean to down play it. But, We do need to remember to keep a sense of humor.5M

D… yes we do for sure. I must say, in the morning when I am shaving I laughed, every time I move the razor, I get really bad tremors in left hand, and when I stop, the tremors stop. I have fun with it. 😂1M

M… It also saves the investment in an electric toothbrush.

D… a sense of humor is very important I think. Some really cool things are starting to happen, like a little bit of a drooling from the left hand side of my mouth when I am taalking… People ask me, are you okay? I say sure I’m feeling fine, seems like I have too much saliva, would you like some?😁