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What are your most bothersome PD symptoms and how do you handle them?
Fatigue, Bradykinesia and loss of fine motor skills. As for fatigue, I am still trying to find the appropriate balance for exercise intensity and duration so I don’t use up all my dopamine early in the day ?. Taking naps has not helped me. Bradykinesia; I try not to stress myself out too much with my slowness of movement and try to focus more on being in the moment. Losing my fine motor skills; I try to make adjustments, such as using a larger pocketbook and not filling it up with stuff, so I rely more on my vision to find things rather than fumbling around in my purse with my hands. For tying shoelaces on my sneakers, I use athletic “lace locks”. -
17 Replies
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Jean, you seem to be very intentional about dealing with your most bothersome symptoms. I guess the combination of the symptoms against the demand realities of our lives, dictates that we be intentional; no more taking life for granted.
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Paul, you got that part right. PD robs us of the ability to perform the simplest of tasks. Things we always did and took for granted; like folding sheets, tying shoes, rolling over in bed; the list is endless..
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My most bothersome PD symptoms seem to be a combination of symptoms that I experience all together, or at times, separately. They include: imbalance, tremor, physical weakness, slowness of movement, slowness of thought, altogether wrapped up in apathy. This combination comes on when I am about to undertake an activity, especially one that I have resisted.
If I can proceed on to whatever the project is, the apathy usually melts away. But the condition of this combination makes me slow and awkward, and challenges my endurance. The quality of my work is compromised, and completion is not guaranteed. Just before sitting down to this question, I completed vacuuming the house, one of my responsibilities. I did it with little trouble. But I don’t mind that chore. Sitting down this question, I was looking forward to it, so I am only bothered by slowness. But if the project is stressful, when I finish, I often feel depleted, unbalanced, tremoring and brain-locked.
In order to begin a project in this resisting condition, I find it necessary to explicitly tell myself ahead of time that I’m going to do it, and then bite the bullet, and go at it.
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Hi Paul, sorry for the delayed response. I seem to have temporarily lost your response. I find when there are multiple tasks or commitments on my plate I do become overwhelmed and end up not doing anything. Apathy at work for me…. I try to avoid setting up too many commitments for myself to avoid feeling overwhelmed. I used to pride myself in my ability to ‘multitask’, something I can no longer do 🙁
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In addition to my complaints of bothersome PD symptoms as I wrote above, there is one insidious effect that really bugs me: my focus on myself. It’s a good thing when I have others around to distract my focus.
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Sometimes focus on yourself is important and I hope you can allow yourself that sometimes. No one can really understand what we with PD have to deal with, so I think it is important for us to practice self care.
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Hi Paul, my name is Ally and I’m the new co-moderator for this forum. I was just going through old posts to catch up on the conversation and I found this thread between you and Jean. How are you doing these days? Are any of your symptoms worsening or getting better? I saw that you don’t like to focus on yourself, but having PD forces you to do just that. I was just wondering if you’ve changed your perspective on that at all. I would love to hear more from you and I’m looking forward to getting to know you better. Thanks for being part of the community, and if you have any ideas for topics, please don’t hesitate to reach out to me or Jean! 🙂
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Ally, Thanks for asking. My symptoms are not getting better, and, indeed, seem to be ganging up on me. I just told my wife this morning, ‘I’m fed-up with this condition’; I’m ready for it to be done. Knowing what I think I do about this disease, I know that it “being done” is not a prospect. I have not changed my perspective on the issue of focus on myself; it’s really tiresome, and results in nothing positive. In the meantime, if you also have PD I wish you well.
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Paul, thanks for responding. I’m sorry to hear things are getting worse. Have you and your wife accessed any support groups or counselling? I don’t have PD but I work in mental heath, and I know that sometimes just talking to other people who can relate (fellow patients/caregivers), or a neutral third party (counsellor), can help alleviate some of the mental burden that accompanies being chronically ill. If there is anything we can do here in this community to help support you, please let me know. My thoughts are with you!
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hi Paul,
I am so sorry to hear you are not doing so well with your symptoms. Having this disease is quite daunting. We never know what we will wake up to in the morning. I wish you well.
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I first noticed tremor symtoms in 2012 and saw a neurologist in 2013 who confirmed that I have Parkinsons. So far my only symtoms are tremor and slight stiffness in my right arm. I am very active and exercise regulary including cardio, weights, stretching, mountain biking and dirt biking. I take 3 doses/day of Senemet, 1mg/day of Azilect, and 2.25 mg/day Mirapex. The tremor has progressed slowly and is especially annoying as it affects my throttle control on the dirt bike and street motorcycle. I have read a lot of research and case studies on DBS, discussed with my neurologist and am seriously considering it. I do have reservations about surgery in general and especially neurosurgery. However, I am going to start the pre-surgery testing protocol soon and then make a decision. I would like to hear from anyone who has had DBS
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Greetings Greg. Bravo! to you. It sounds as though you have just continued to be active doing the things you like. That annoyance with the tremor’s affect on the throttle control reminds me that I experience a similar situation: my right foot is subject to dyskinesia and often enough when I’m driving the car will lurch from my footwork on the gas pedal. ~~ I don’t have any experience with DBS and have thought that I won’t consider it, for now. Good luck with that; I hope it woks out well for you.
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Paul,
Yikes, it is scary when our body decides to do its own thing regardless of what we tell it. My left side is most affected by PD and I hate it when it doesnt listen to me 🙂 One time when cycling, my left foot froze and I could not clip out of the pedal no matter how much I tried to “will’ it. Eventually I un-clipped, but it was not because of something I said to my foot. LOL
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Greg, it sounds as though you have taken charge of your well- being! Good for you!! I have an acquaintance who had DBS and her life has changed dramatically for the better. She was early onset. I am not ready to consider that as I seem to be having some success with my exercise regimen, diet and meds. I will post a topic tomorrow about DBS to see if anyone wants to share their experiences. Thanks for mentioning that.
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Greg, did you see this article: https://parkinsonsnewstoday.com/2018/07/05/dbs-shows-potential-to-ease-tremors-in-early-stage-parkinsons-patients-in-pilot-study/
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Jean, I did see the article and am encouraged by it. My goal is to stay as active as possible for as long as I am able.
Hopefully there will be some approved research soon that will slow the progression or stop the progression. Due to the complexity of the disease and great differences in individuals symptoms, I seriously doubt a cure will be found in the next 20 years.-
I agree with you Gregg; I dont see a cure in my lifetime. Like you, I will stay active for as long as I can. I think that is our best hope at this point in time to get relief from the symptoms and progression of PD.
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