You may want to go online to Davis Phinney Foundation for Parkinson’s and request the free manual ‘Every Victory Counts’ It is excellent and will greatly benefit anyone reading it. It is 400 pages long. from Mr. Phinney’s intro: “This race, a no-holds-barred winner-take-all type of event, demands everything from me. Let down my guard, and it’ll knock me flat – but by refusing to give in, by exercising daily, by eating well and most especially, by maintaining a positive attitude – I find ways to win.”
I’ve been browsing through posts on MyParkinsonsTeam.. an on line support group and social network. I have cut and pasted a few of the comments regarding attitude and patience that I found insightful.
“Good morning. I truly believe the best thing to do with the memory loss problem is to lighten up. All my friends and family know what to expect from my pd, so they are very patient with me. If I forget a word, I just call it “thingamagic” and go on with the conversation. I am bilingual, so if I recall the word in the other language, I’ll use it. Even my grandkids, who love to sit and talk with me, when I forget their names and call them “little girl”, they just say their name and go on like nothing happened. I am not trying to make light of anyone’s condition, but remember, it’s half illness, half attitude. The more you stress, the harder it gets. Have a blessed day. “
“I read a lot , and I volunteer doing a computer job in which I have to keep my brain running normal . If you don’t use it you’ll loose it.”
“I sometimes loose words but probably as often as any other 63 yr. old. What frustrates me is when I’m told by family and friends “ I just told you about that” or “ You already told me that”. I have a fairly high IQ so the loss of my short term memory really irks me. “
“I just say,”uh oh Parkinson moment” and people accept that if you treat it as “Oh Well..”
‘The only other answer for caregivers whose spouse/patient is experiencing this is patience. There are days that I don’t know how many times in 1 day the thought runs through my brain “It’s the disease not him.” That is what you have to constantly remember.’
“If you’re the person with the ‘memory fog’ then you don’t know what you’ve forgotten – that’s the scary part. I’m listening to Peter Gabriel ‘Don’t give up’ https://youtu.be/VjEq-r2agqc this gives me encouragement and a clue – learn a new song, learn all the words, sing along – learning something new utilizes the brain’s inherent abilities, and will sustain memory function … learn a new sequence of numbers (someones phone number! “
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.
I really liked this message. I hope it resonates with you’all.
By TIM HAGUE SR / Jan 2, 2019 / Live Your Best
“Live Your Best Lesson 3: Accept Limits”
“Contentment. The word alone can produce a ripple of frustration in my soul: I imagine a quiet peacefulness that’s at odds with what I often feel my life to be. I’ve known people who seem to inhabit that kind of space, and I’ve always wondered what it might be like.”
“I remember being sixteen and sitting on our front step one hot summer day in Kansas, bored out of my mind, wishing I was older and could take on all the amazing things that only adults get to do. I wonder if this doesn’t represent the first seeds of my discontent. A restlessness that only now, many years later, is being tamed by Parkinson’s, of all things. It’s an unrelenting master. You may dance with it, but it will choose the music and the timing. At best, you can only follow along.”
“I’ve come to terms with this fact. That is, the nurse in me understands the clinical reality; I can say the words out loud without flinching. I’ve also taken it that difficult step further: I acknowledge that modern medicine cures very little and that I’ll likely go to my grave with this new best friend whom I hate.”
“Surprisingly, this has brought me a level of peace, of contentment.”
“Sounds insane, I know. Does my acceptance of Parkinson’s equal a lack of courage to move forward? Not at all. Instead it gives me a foundation from which to attack the future. I can’t change the fact that I have Parkinson’s. It doesn’t mean that I can’t live well with the disease and that I can’t work for a cure. But until I accept reality, I’ll never be able to successfully move forward and I’ll never know true contentment.”
“What is contentment? Is it merely “a state of happiness and satisfaction,” as it’s defined? I think it’s more than that. I think it involves a choice—but do you always have one? Yes and no. I can’t choose to not have Parkinson’s, but I can choose how I respond to it. The disease is a hard thing to bear, but is it any more difficult to choose contentment? Parkinson’s has taken my ability to run as well as I did, but what good would it do me to daily lament that I can no longer manage a seven-minute mile? It seems like a silly notion. The disease has also taken my ability to function as a nurse—and of what value would it be for me to lament this loss? Yes, there is an appropriate mourning to be had, but at some point I need to move on.”
“Here’s the hard part, the part that many people facing life-changing circumstances struggle with: “What can I do to remain productive and useful?” One practice I have is to list the things I can still do and then ask how these might be used to help others. I would encourage you to start your own list, keeping in mind that no ability is too small or insignificant to make the cut. Now, how might you deploy these to put a smile on someone’s face or ease their burden?”
“When we take the time to draw up an inventory of our lives, we find that things may not be as bleak, we may not be as barren in ability, as we thought. We can choose to accept our shortcomings and embrace what we can do.”
“Our lives are finite. We all know we’ve been given a certain number of days; it’s just that we rarely like to think about it. Parkinson’s has driven this reality home. It has encouraged me to make good use of my time, knowing that it could be taken from me. It’s a matter of being courageous enough to acknowledge that truth—and to recognize that our time is also infinite in the sense that every day we can choose innumerable ways in which we might live our best. The options before us are limited only by our imagination and our willingness to dream new dreams.”
“Early this spring, an arborist came by and inspected the magnificent old elm tree that had stood in our yard for as long as we’ve lived here. It was a truly beautiful tree, the largest for blocks, its branches extending into our neighbor’s yard and creating a canopy over the street. We were told that the tree had a major split down the center of its huge, bifurcated trunk and would need to be cut down. It was hard to believe: the tree looked healthy and strong, with no visible sign of disease. Nonetheless, it stood on city property and had to go.”
“We were dreading that day. Now Sheryl was in tears as we witnessed the speed and cold efficiency with which our tree was brought down. Giant branches came thudding to the ground; they were thrown into the chipper and all but vaporized. In short order our mighty elm was reduced to sawdust and chips, our yard left with nothing but little mounds of dust dotting the newly fallen snow. When our daughters arrived home from school they cried.”
“We’ll mourn the loss of this beautiful tree, but in time we’ll move on. It’s inevitable. And it’s necessary, even healthy that we do so. But that doesn’t mean we’ll forget; rather, we’ll plant a new tree where the old one has fallen. This is what it is to Live Your Best—this is contentment in the living. We can’t change the fact that the tree had become unsafe. So in its place we’ll plant anew, begin a new season of growth. And that tree will bloom with a beauty that couldn’t have existed had the old one not come down.”
“Parkinson’s has brought a certain closure to my past life—you could say that it has felled it. But I can plant anew; I too can experience new growth and new beauty. When I accept limits and practice contentment, I can look forward to all that will be as I learn to grow in this new life I’ve been given. It won’t look the way I had imagined, but I’m confident that it will be all that it should be.”
“As a nurse I’ve watched as individuals and families fight hard against illness and even death. I’ve seen the frustration, the anger, the hardness that comes over people when they realize that they won’t have their way over their ailment. I’ve watched them leave this life with sour, bitter souls, angry at the hand they’d been dealt. But I’ve also witnessed what happens with those who are content with the life they’ve been given: rather than feeling resentful about what they didn’t have, they leave this world full of gratitude for all they did. The difference is striking, and it’s compelled me to continually weigh my own life. And when its totality is placed in the balance, there’s no reasonable response other than contentment.”
“That doesn’t come easily to someone who’s often been described as a Type A personality. I like to know where I’m going, to control the pace and the course. I’ve always had the sense that there are more challenges to be taken on and tasks to be accomplished. So learning to simplify my life is a daily struggle that involves all aspects of my being.”
“It helps to learn the boundaries of control—that I can still do many things, but in a more thoughtful manner. For example, because I think better early in the day, mornings are best for higher-level cognitive work. But that’s also when I have more physical energy. And since I can’t go to the gym every morning and get other things done as well, I need to stagger my morning activities over the week. So I do have some measure of control; it just looks different than it used to. And a big part of accepting limits is setting reasonable goals for myself each day. The choice is never easy, but it is simple.”
“This blog post is an excerpt from the book Perseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined”
Today is World Parkinson’s day and it’s an opportunity to raise awareness for Parkinson’s disease.
I copied these thoughts which follow… from various other blogs.. sorry I forgot to write down who to credit. 😦
“Parkinson’s Awareness Month and I have questions. Who is it we are trying to make aware? What is the goal of this Awareness Month? Is it to make others aware of the disease, accept the disease or to better understand the disease? However I believe that, being aware , accepting and understanding are all totally different things! Too often you may have experienced Parkies that are aware of and have accepted the disease, without understanding what the disease brings to them. Those of us with Parkinson’s could do a lot better at becoming more aware of how we accept and understand the disease. You may have met fellow Parkies that have given into what the disease may bring before those limitations are even presented to them. They are certainly aware of the disease, they have accepted the disease but their understanding of it has let the disease take a part of their life from them before it had to happen. Does our own awareness of Parkinson’s grow as the disease progresses? If so our acceptance and our understanding must grow as well. So to me Parkinson Awareness Month is for; 1:Those who don’t have it 2;Those caregivers that care for us. 3:Those of us that have the disease. Put them in any order you want !”
But before I discuss those, I want you to think about this: “researchers say that by the time a person with Parkinson’s disease starts experiencing motor symptoms, they have lost between 60% – 80% of their dopamine producing neurons! “
“So, let’s talk about Parkinson’s disease (PD)… actually, I should be more specific – let’s talk about dopamine. To those who are not familiar with PD, dopamine is said to be the neurotransmitter that is deficient in PD patients. This brain chemical is responsible for many important human functions.”
What that means is that, in my case, as of summer 0f 2014 (my first recollection of weakness in my legs), I had lost way more than half of my dopamine producing neurons. This was over 5 years ago.
“Let’s go back to dopamine’s role in human functions – it plays a role in movement, memory, cognition, mood, attention, and behavior. Now, I know the relationship is not precisely linear, but if a person with Parkinson’s disease (PWP) has lost the majority of their dopamine producing neurons – neurons that produce the brain chemicals responsible for the aforementioned functions, I think it stands to reason that even if they gave a 100% effort all the time in these areas, they would still come up short. This is not a justification for bad behavior nor is it an excuse for a PWP not giving their best effort. This is simply raising awareness about the difficult limitations PWP are confronted with. If we, PWPs, are only operating with a small fraction of this all-powerful neurotransmitter then our mood, our cognitive abilities, our behavior, our drive, our attention to details, our addictions, and many more “ours” are all bound to be impacted, right? When it comes to our abilities to perform all these functions, rest assured that the playing field is not level – not even by a long shot. Think about that.– “
Do you ever feel like “Honestly, toasters come with more instructions than a diagnosis of Parkinson’s Disease “? perhaps the following link will help.
This is a link to a 55 page document produced by the MJFF with ‘real talk for patients and families’ exploring everything from learning the diagnosis, the process of accepting and learning about , deciding when to reveal your diagnosis to others. It covers seven tenents:
I discovered a website tonight at PDonthemove.com The creaters have parkinson’s and claim… “To fight Parkinson’s effectively you must know it. But, in order to know it, you must have it.”
The website is FREE for you to use and enjoy. It is filled with workouts, exercises, and recipes. [They do offer consultations for a fee.] I have cut & pasted philosophy from their intro. I will post their Flourless Sprouted Grain Bread recipe. I am excited to try it.
“Cure or not, there is a lot that can be done to make Parkinson’s more manageable, tolerable and controlled. But, it’s not as easy as taking a pill. It requires tremendous patience, discipline and personal resolve. Generally, there is a huge gap between your needs and what most neurologists can provide. Caring for a person with PD requires a personal connection, observation and time.., time that most of today’s doctors simply do not have “
” After twelve years of searching for ways to live better with Parkinson’s, it is my duty to point out the inconsistencies and lack of useful knowledge that permeates PD’s eco-system. PD is so much more than a gradual loss of mobility and cognitive function. Every person that I work with presents his or her unique set of challenges and symptom variants that must be observed and evaluated on individual basis.”
“Living with Parkinson’s and finding the right way to combat the inevitable onslaught of worsening symptoms is the kind of education you can’t buy It is in the details of living with it every day, of understanding your triggers, of focusing on your physical condition that makes the difference. It’s not enough to do a few squats, punch a heavy bag, take a dance class or eat fava beans in obscene quantities. The sum of many different, daily activities determines the success of any personal quest to fight PD. You must be physically active, eat right, monitor and manage your stress. “
“These days, the web is abuzz with catchy words, such as neuroplasticity — the ability of the brain to change throughout an individual’s life. How does that help a person with PD? Is being able to move normally doing a previously acquired skill neuroplasticity? How do we enhance neuroplasticity, and utilize pathways that circumvent the challenges Parkinson’s poses? These questions are often misunderstood, or simply ignored. To effectively generate the creation of fresh neural-pathways that bypass the affected areas of the brain, you must analyze the weakened movement and create a variation that can be performed correctly and repeatedly to allow the formation of a strong signal that is unaffected by PD. This signal may be existent already, but strengthening it, making it into a habit, is key. It is almost like learning or inventing a new language. Shuffling gait, freezing, Dystonia, Dyskinesia and many other issues become manageable, only because the movement has been altered, sometimes very slightly. The puzzling question is, what is that new movement, or a variation of movements? It’s impossible to answer that question broadly because in order to understand what particular new movement may be helpful requires observation and experience to key in on the subtleties of each individual case. “
“Same goes for nutrition. Telling someone to eat right is a good advice, but for a person with PD you better come up with more than just EAT RIGHT… Again, the right advice can only be based on thorough observation and evaluation of each individual person. Dietary modifications will only work if a person with PD has the discipline to accept the necessary changes and is determined enough to allow for the new nutritional guidance to do its work.”
“We help people by focusing on the subtleties of their symptoms and we offer solutions based on personal experience and knowledge accumulated over the last twelve years of living with PD 24/7. We do not simply guess how to help anyone to feel better. We work to demystify the most important truths about PD, so that you too can reclaim lost or compromised abilities.”