July 22, 2020 at 6:26 am #18900
With a degenerative disease like Parkinsons, I’ve seen tremendous emotional tidal waves. Sometimes you might feel happy to be alive. Other times you might wonder why Parkinsons chose you. How have you learned to ride out these changes? Do you have tricks to stay motivated during the hard times?
July 22, 2020 at 11:42 am #19032Mark SummerParticipant
I am very recently diagnosed and still trying to get a grip on the impact PD will have on our lives…it’s all overwhelming. Also, trying to see if this gets posted on the forum…not sure I am replying correctly? Mark
July 22, 2020 at 3:23 pm #19035
Good topic Mary Beth
Hello Mark. You are a quick study. You already have the hang of it.
I am just starting my third year after diagnosis and am 67 years old.. I think (believe, hope!) I have finally got my meds to where I want them about 6 months ago. Boy, that took a while. But even with that, I have good days and bad days. Physically good and bad days. Many more good days than bad days. A bad day for me is when it seem the meds are not working and I have trouble getting around and my “plumbing” seems to not want to work properly and/or I just don’t seem to care about anything, and am surprised that the meds don’t seem to be working. On the emotional side, I can sense what seems like a physical depression lurking and wanting to attempt a strike and try to take over now and then. Not caring and being ambivalent about normal things is a new thing since the diagnosis. I understand that is actually a “physical” symptom of the parkinsonism as it is a result of the chemical changes in the brain that occurs from the lack of dopamine production etc. I have adapted to all this by knowing the next day will be different and usually better. Patience is essential in all things PD related. That applies equally to finding the right doctor, diagnosis, treatment plan, adjustment of meds, and also to figuring out how to adapt to the changes that will now effect what you want to do, what you can do, and most importantly, what you should do. That last part is now most important. We all now have to end each decision with “Ok, now what is it I should do?” What you can do and what you want to do now must defer to what it is you should do. I have my foolproof solution to a bad PD day. I am my starting 35th year of running my own business full time (kind a gag retirement gift this PD thing is. isn’t it?), anyway, so that means I am the boss and can do anything I want, any time I want to. So long as those darn clients will just leave me alone (and not call me at home!!!) On a bad day, whether it is physical or motivation wise, I just go home take a warm bath and take it easy! Tomorrow will be another day. When I come home at an unusual time, my wife will ask how I am doing and I say “Marvelous!” Then she knows I am having a bad PD day. Or at other times when she says I look a little stiff, I will say “you know I have spinal stenosis!” That tells her that my meds are not working as well as usual that day. (I just happen have spinal stenosis too and it is a fun phrase to use) This is our code between each other , which allows her to ask without being worrisome and for me to answer without being complaining, each knowing to be patient and I will be better in the bye and bye. But, you do need to strictly keep to the meds regime to keep on top of this PD thing. For me that means to keep my system flooded 24/7 with Sinemet. I have found that if you don’t take those magic pills, it ain’t gonna work out so well!
I apologize for any syntax or grammar problems in my posts. It is hard for me to edit this with only three or four lines showing at a time. I think that is a PD thing too. Right? And my touch typing skills, which I proudly acquired in high school (on a fancy new IBM Selectric typewriter with the typing ball , for you old timers out there) is seemingly losing the battle with this PD thing. What I think I type and what I actually do type are not always the same thing, if you know what I mean. My body’s many “muscle memory” abilities are slowly being challenged in a haphazard fashion.
Best regard to you all.
July 23, 2020 at 10:20 am #19040
Thank you for your post. It certainly is overwhelming. My Dad was diagnosed in 2013, and it’s been a bit of adjustment for the whole family. But he’s optimistic, and we’re finding ways to get through it!
I really appreciate your humor. My Dad has a similar approach. He seldom complains, and it can be tough to interpret how he’s REALLY doing. But I’m really proud of him for being as strong as he is. He was just telling me that he notices a tremendous difference in his symptoms when he is in the habit of exercising, as well. Right now (instead of going to Rock Steady Boxing) he’s in a routine of biking a couple miles a day. And I think the sunshine is helping him too. But, like you, he has mentioned that every day is different. I think that’s a true statement for everyone, but PD just makes it a little more obvious. I hope to hear more from you on these forums! I really enjoyed that feedback.
July 23, 2020 at 2:39 pm #19047Sharon FisherParticipant
<p style=”text-align: left;”>Hi. I am going to try this. Thank you all for sharing. It really helps me to read that others are struggling too. My biggest issues are fatigue, apathy and depression. I also have a lot of pain. I handle it through my faith, prayer and worship. I try to stay positive and upbeat as much as I can. Sometimes I too have to just slow down and rest. I enjoy warm baths, Christian TV, and reading. I also exercise but its not my favorite. Being stuck in the house all the time is hard for me. I am a people person. I do attend my Sunday School. Life Group, and Church on Zoom. That helps a lot.</p>
I was diagnosed in July 2018 and will be 78 next month. I have to tell you it rocked my world and it took a long time to come back from the devastation. But God is good and things are in a “new normal” now! Thanks for letting me share.
July 23, 2020 at 3:43 pm #19049
I too received this PD thing as a very interesting retirement gift. Though it seems to have found me a bit earlier than you at age 65. I call my “new normal” Plan B. I had a Plan A but now I am on Plan B. I totally agree that warm baths are a secret weapon against this PD thing many days. I will say from my reading and research that depression is a well known and expected symptom of PD because of the changes in the chemistry in our brains. There are “gentle” meds that can help with that in my experience. It is not a lack of being able to cope. It is a physical thing as I understand it. In my opinion and experience there is no need to avoid treatment for that symptom too. We will still have the anxiety of coping with the PD thing. But the physical aspect can be addressed. By the way my Plan B is now my Plan A. So I have to come up with another Plan B. My original Plan A involved me likely having to be a caregiver for my wife. So now we are working on a Plan B because of the new Plan A. Then when we move to that Plan B. It will become our Plan A and we will have come up with another Plan B. This is something that will always keep us busy. Time for a warm bath , don’t you think!
By the way, if you don’t mind my saying so, at 78. you are impressive with picking up on this form thing.
July 23, 2020 at 9:32 pm #19051Robert HarrisParticipant
To Robert C from Robert H:
Well, compadre in PD combat, we have a lot in common. Your last paragraph in another related post mentions your problem with typing. My accuracy rate is about 10-6: for every ten letters I type, six of them are typos requiring me to back up and retype. If my meds have pretty much burned off, I have to quit typing. And that’s a good thing, because with meds running low, I lose all motivation to read, write, think, clean up my garage, or sometimes even to watch TV.
Here are some ideas you might find useful for help with your mental outlook and feeling worn out:
1. Neurologists have discovered that dopamine works in tandem with testosterone to enhance a positive outlook, and a feeling of energy. And, of course, as men age, our testosterone levels diminish. So, if you think you might have low testosterone, ask your neurologist or family doctor to prescribe a test for you.
2. Change your thinking orientation from “What can I get?” to “What can I give?” That is, orient yourself as a Giver instead of a Taker. Think of ways to cheer others up, help them out, give them a kind word or a free coffee. There is a saying, “The more you get, the more you have. The more you give, the more you are.” Some philosophers have said that we have a duty to be happy, or at least to wear a happy demeanor in the presence of others. It’s rather uncivil and unkind to walk around looking sad or griping about losing your favorite parking place.
3. Seek some consolation in meditation and philosophy. It has been said that on the mantel of nearly every home in 19th century America were three books: The Bible, The Imitation of Christ by Thomas a Kempis, and The Meditations of Marcus Aurelius. If you are not religious or have a faith other than Christianity, start with Marcus Aurelius. He was a Roman emperor in the second century AD. If you are willing to “take a chance on God,” read the Bible and pray that God will reveal himself to you through it. (The New Testament Gospel Of John is a good place to start. The Old Testament Book of Proverbs is another book to visit early.)*
4. If you discover that gaining acquaintance with God through his Son Jesus brings you hope and encouragement, you will be delivered into a life of loved purpose. Your symptoms might not improve–they might get worse, in fact–but you will have God in your life to lead and guide and suffer with you.
*If you want to continue your exploration of philosophy, I recommend the following. All of these titles will stimulate your thinking, and all are straightforward and can be understood with little effort. (If you find that you are having great difficulty in understanding one of the Roman or Greek authors, look for a different translation.)
Cicero, On Duties
Seneca, Letters from a Stoic
Samuel Johnson, The History of Rasselas, Prince of Abysinnia
Aristotle, The Nicomachean Ethics
Blaise Pascal, Pensees.
Best to everyone
“Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong.” –2 Corinthians 12:10 (NASB)
July 24, 2020 at 12:06 am #19053
Hi Robert H
Thanks for the kind and wise comments on my comments.
Wells said and well received.
July 25, 2020 at 11:56 am #19058Toni ShapiroParticipant
First, I would have never thought that any of you had trouble typing or constructing good sentences. Gosh I already had to go back and make 4 corrections in one sentence! Anyway, good for you because you would never know from your posts.
I liked what was said that I can I give rather than take. Yeah, It always helps me Robert H. Although I can’t manuver the knitchen well and using flour and such and mesuring T and t forget it! (It would take 10 people to clean the kitchen if I tried it again lol)So painfully I compromised and used some commercial things. My husband bought cookie dough and I mixed various seeds nuts and dried fruit kneading into store bought dough which exercises my hands too. My hands feel useless like I have on boxing gloves but I can enjoy kneding. In the end it is a great feeling to accomplish something and have the cookies deliverd to my neighbours who have been so supportive.
Robert I will take that bath this afteroon. It sounds perfect for my inside shakes this morning.
One thing. My PD counsellor suggests to me to sometimes allow the thing that hurts or frightens me inside and wallow in it a bit rather than fight it all the time. I works for me most of the time. Constantly telling myself I should do this I should do that is exhausting so just like before I had PD I will take a pajama day and not do anything much. Most times the next day I am ready enthusisastically. same thing with my depression and anxiety.
have a good day all,.
ression, tried everything for my fatigue that doesnt respond to exercise or much of anything,
July 25, 2020 at 1:56 pm #19059
I have a motivation story that was brought to mind recently.
I recently had to make a phone call to a client who is holed up with his family in their home in Idaho. That call and seeing on the news that Idaho is now a semi-hot spot for this COVID virus triggered a memory that the great novelist Ernest Hemingway resided in Idaho for much of his life.
I read an interview of Mr. Hemingway many years ago where the interviewer asked about the actual techniques of the writing process and how he is gets motivated and keeps motivated to write. In answer as to his ability to be disciplined and meeting deadlines and such, Mr. Hemingway said he was just like most people in actually getting down to the task at hand. There is usually a process of avoiding doing the hard things and just doing the easy things. As an example, I think he said that just before he got to work on his masterpiece short story “Old Man and the Sea”, the first thing he did was “defrost the refrigerator”. I think if we are all honest with ourselves, we all have “defrosted the refrigerator” a few times when the hard work was looming over us. So, our basic human nature to avoid the hard stuff for irrelevant stuff is just part of all of us. We would rather do things that make us feel better now than things that don’t make us feel better now. (Whether the hard stuff makes us feel better in the longer term is another topic, isn’t it?). I do think the chemical changes in our brains from this PD thing clearly changes our ability to feel better now as much as we could before. I think we will all have times of yearning for the feel better times that came more easily when we had more dopamine in our brains. I think we should beware of that.
With that I think it is very very very important that I clarify something.
A “warm bath” is NOT the same thing as “defrosting the refrigerator”, for those of you who have been following this topic for a while. It is considered to be ESSENTIAL THERAPY!!!! I really do have spinal stenosis!
I think I better get back to work.
July 29, 2020 at 6:07 pm #19077Timothy ZeddiesParticipant
Hi all! I so appreciate the sharing going on here. While there are people with worse problems than mine, it’s good to hear from those I know are having some of the same feelings and experiences I am having.
PD diagnosed for 4+ years (at age 65+). (I hope I *get* to 78, Sharon, in whatever shape I am!). Luckily, at the moment, my problems are mostly about movement, especially walking, for me. So one big part of motivation is for me to keep exercising. Mostly I just remind myself a) how not-so-good I feel if I go more than a couple of days without doing anything—surely I can get thru 15-30 minutes of exercise; and b) my main goal in life is to be there as much as possible for my beloved spouse. And the closer to “normalish” I can get, the more likely that will be true.
It’s also good to be reminded that depression and sadness is in part due to the disease. I have for most of my life had a fairly happy aspect, although there were some real problems. And, now that my stress is much less, due to retirement, I am more and more in touch with my feelings—and some of those real problems can lead one down a long and dark road. So it’s good to know that some of the darkness and despair is not as inevitable as it can feel at times.
I live in my head a lot (NOT a people person), so I can get pretty lost in there. Talking to my partner as much as possible is really important. I do get a lot out of Zoom Church, strange as it is. And I agree that if you can find some spiritual or philosophical anchor. At Blue Zones (look it up) some of the most important things to live a long time are * keep moving; *have a community; *have a spiritual life; *have a purpose that gets you up in the morning. That works for having PD as well, it turns out.
Take care, everyone. Blessings to all of you.
July 30, 2020 at 11:01 am #19081
Timothy, thank you for sharing your thoughts. My Dad was diagnosed in 2013. And he’s 67 now. I’ve had the chance to see him go through quite alot of different chapters in his life. And yes, depression is a normal part of the process. But it sounds like you’ve found good ways to stay rooted and connected to the communities that count.
In addition to your spouse, church and exercise, do you find that you have other anchors that work for you too?
July 30, 2020 at 11:03 am #19082
Thank you so much for sharing that story. I found a tremendous amount of wisdom in those words. And I think they can be applied everywhere. How often do you suppose we need to “defrost the refrigerator”? I think that I try to do difficult things every day. But they do tax you in other ways. Still, as a writer and an athlete, I see the value in going to those hard-to-reach places.
July 30, 2020 at 11:05 am #19083
Toni- I’ve been working on that process with my therapist as well. Why is it that the most difficult work is the work that always has to be done? Hah! I do find that I feel a little bit lighter and more enthusiastic after I travel through these dark places. Is that how it works for you too?
July 31, 2020 at 7:50 am #19091Helen HalchukParticipant
I am the same as Mark. I got diagnosed 1 month ago and the am sad but motivated to exercise every day. I need a support group and hope to find one soon.
July 31, 2020 at 12:30 pm #19089Sharon L KrischerParticipant
I have written about staying motivated several times on my blog, Twitchy Woman. This was originally published on Parkinsonsdisease.net.
Here is an excerpt:
More often than not, it is the people around me who keep me going. First are my family and friends. Without their support, I probably would just stay in bed. They get me through each day, supporting me in all of my crazy endeavors.
Talk to others who are living well with PD. Sometimes only another person with PD can understand what you need and can give you the answers to your questions. I have made some wonderful friendships in the local Parkinson’s community, on-line and at various PD conferences. Getting together with them in person, or through the internet can be very uplifting.
You can read the rest at https://twitchywoman.com/2020/02/25/what-keeps-me-motivated-while-living-with-parkinsons/
July 31, 2020 at 6:38 pm #19099Sharon FisherParticipant
<p style=”text-align: left;”>Thanks everyone for your encouraging words about my tech skills. I do struggle but I am blessed to live with my son and two college age grandsons.</p>
I get real tired of the depression, apathy and pain at 78 but my faith does keep me moving forward. I struggle with exercise but I know its vital. I go to a Parkinsons exercise class at the YMCA a couple of days a week and do some in between.
August 4, 2020 at 9:40 am #19113
Thank you for your wisdom. I don’t have PD but I think that’s a relevant concept across the board. I was recently learning that in the areas of the world where life expectancy is over 100 years, community is a large factor. Being supported as we age seems to play a role in our actual lifespan.
My Dad (diagnosed in 2013) has found comfort at home, with friends and at Rock Steady Boxing. Have you managed to maintain social contact through Covid?
August 4, 2020 at 9:45 am #19116
Helen, have you been able to find any virtual support groups?
August 7, 2020 at 10:00 pm #19138Jacque WalstonParticipant
With this CoVid problem going on, I try to stay at home a lot, going out only for groceries, Dr. appts, and to help at church (2 or 3 people, masks, distancing). Zoom church is OK but weird. I really miss my support group and am not sure how to find them. Hence, I do get depressed and un-motivated more frequently. Sometimes the only reason I get up is to let the dog out and feed her. (BTW, lots of typing errors here to correct, especially with my heavy left fourth digit which insists on adding sssssssssssssssssssss when I’m not paying attention. A program called Grammerly helps by automatically correcting spelling and grammar.) I try doing for others and that can usually bring me out of my funk. Right now a friend of mine, age 91, is in rehab and I am doing some odd jobs at his house that hopefully will improve his quality of life when he gets home: replace light bulbs, repair a leaky faucet, fix that door that doesn’t latch. The handygal things I can still do. Keeps me busy, happy, and I don’t have to hurry. I have a retired maintenance man who works with me. He gets paid a bit (for the plumbing) and I feel like I’m doing good for all three of us.
August 10, 2020 at 2:06 pm #19152Patricia B WargoParticipant
I tend to think in terms of bullet points when responding to such a broad question as “Staying Motivated,” So here are the ones I’ve thought of while reading the previous posts:
1. Exercise has proven to be essential to maintaining my motivation, specifically Rock Steady Boxing. It provides not only a tremendous workout, but socializing with others in the classes helps a well. I see a real difference in my body’s responses when I don’t get a good workout (at least 1 hr. per session). Note the small advances you make in whatever exercise program you choose to incorporate into your life.
2. Patience is something I had to work on, for PD does slow me down.
3. Practicing Mindfulness techniques has helped me become more aware of my body’s reactions.
4. Nutrition – studies have shown that the Mediterranean diet meets our PD needs the best (See dr. Mischeley’s work) I am just starting to incorporate that into my diet, so the jury’s still out on that one for me personally.
That’s all I can remember for now. (Memory is also an issue with PD) so I’ll sign off.
August 11, 2020 at 11:00 am #19154
Jacque – it sounds like you’re doing the best you can. I’m glad to hear that you’re finding ways to adjust to a Covid-19 world. Are any of the local businesses starting to open up yet?
August 11, 2020 at 11:01 am #19155
Patricia, thank you for your thoughts. I agree that motivation is a complicated subject. And sometimes we have to go through a bit of trial and error before that balance starts to happen. What are you favorite RSB exercises?
October 11, 2020 at 10:25 pm #19519sandra wilkinsonParticipant
For me it’s hard to stay motivated. Biggest problems are fatigue, anxiety and depression. I like to be by myself so I have noticed I do not engage in any outside activities like I used to before I was diagnosed in 2018. Although before Covid I was doing an exercise class every week and attending a support group once a month. These have been abandoned since Covid to start next year. Nothing I do helps with the motivation. So I just do anything, like setting a fresh vase of flowers on the table or recording shows on tv to watch when there’s nothing else on, or flipping through my cookery books telling myself the recipes I’ll make when I feel motivated ha ha! I seem to live with a constant fog over my head which I attribute to my meds – I take Kinson 3x a day for pd, then lumic for depression and lyrica for restless legs. With all this I am still able to cry and release tension inside me, that is my saving grace! I think I”m becoming more and more of a recluse each day but I have my husband to talk to and a few friends to text. I feel disinclined to go out with this covid all around my suburb in Sydney. Going to another new neurologist next month – my 4th. Wish me luck!
October 29, 2020 at 10:54 am #19641
Sandra, I’m happy to hear that you’ve found ways to release the tension. My Dad has historically used Rock Steady Boxing for this purpose. But our local gym closed down during Covid, and now he has to do a bit of restructuring. He doesn’t often talk openly about the depression and sadness, but I know it’s there for him too.
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