Garrett McAuliffe
Forum Replies Created
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My brother says “life is hard already, why go camping?” I have done a lot of backpacking and hiking in my life but Parkinsons at this stage makes camping pretty daunting to me. I will appreciate your enjoyment vicariously!
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I thought I had Parkinson’s at the same age as I was diagnosed 62 years old. And my grandmother his mother also seems to have had Parkinson’s. I’m sure that there’s a genetic link. It’s complicated but I don’t think it’s debated anymore.
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I had Parkinson’s at the same age as my father with similar symptoms. As he was, I was diagnosed at 62 years old. And my grandmother his mother also seems to have had Parkinson’s. I’m sure that there’s a genetic link. It’s complicated but I don’t think it’s debated anymore.
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I have retired after 32 years at the university as a professor and 18 previous years being a teacher and a counselor. So at 72, I’ve called it quits because it is way too stressful in my 11 years since diagnosis to have any pressures like that. I too experience my increasing tremor when I have to do financial thinking or tasks that pile on together. I may have responded to this before but I try to take every task one at a time and then take a break. Task, break, task, break. We walk the dogs I come home and rest. I work in the garden and pick rest. I’m doing some work on the computer I break in between. That is unlikely Type A that I’ve always been so it is a learning process. I have to explain this to my spouse, As it could be seen as being lazy and I contribute. Instead of multitasking, I heard someone describe it as semi-tasking – Doing half as much and being OK with it.
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Reducing stress is a major effort of mine. After plowing through 10 years of Parkinsons while working, I am about to retire. That takes away one stress. Also, any concentration type of thinking increases my tremors and other symptoms. I often lie or sit down and do mindful meditation in between any tasks. I tend not to socialize as much as I once did. But I don’t want to give up my connections to other people either. So I have a zoom call with friends who I grew up with once a week and even though it’s tremor increasing, it’s worth it. So even. good stress like excitement and conversation increase my symptoms as does work stress. One challenge is trying to help around the house and do things with my wife does not have Parkinson’s. I used to do lots of house tasks and gardening but I just have to do what I can. Finally, I have my rule of “one thing in a row. “That means that I’ll do one thing socially or cooking or raking leaves or using the computer and have a liedown time in between any stressful events. Again, the challenge is to remain sociable enough when socializing causes Parkinson’s symptoms to be exacerbated. Ironically, I’m not looking forward to the end of the pandemic for the sake of the increase in social events like dinners and visits.
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It is clearly tremors for me. My leg gets achy and jumps around when my meds are wearing off and it last for 45 minutes or so, depending on whether there is stress. I can’t do anything useful when I am in the off state. My wife asked me to prepare for a window and also to check our credit card account when I was off today and I couldn’t do them effectively. So I go to my “meditation room,” And practice mindful breathing to an audio narration. So tremor and foggy brain and a feeling of anxiety that comes with it or combination of symptoms that occur all day off and on. I’ve had Parkinson’s for at least 15 years at this point.
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Somehow I lost my first response. I have Covid as there’s another rocksteady boxing participant. I suspect I got it at the Y when I went to rocksteady boxing, ironically to help my Parkinson’s. I was short of breath and was hospitalized for three days and was on a breathing oxygen machine. What is important is that the virus has exacerbated all of my Parkinson’s symptoms. At times I can’t stop the tremor in my leg. An article about Covid and Parkinson’s they mentioned that you have to take extra Levodopa during the virus. I hope there are no long-term effects. I was scheduled for DBSFor late January but because of the Covid increase it has been postponed. I’ve been waiting six years to get Dbs. So in some I am feeling miserable with a combination of Covid and Parkinson’s joining forces. Feeling lousy and getting this double whammy is daunting. Call vid will eventually go away but Parkinson’s won’t. So I see webinars on a DAVIS Phinney website and see him 20 years after diagnosis and Michael J. Fox longer than that and I know I can plow through this. That’s the beginning of my story anyway.
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I was diagnosed in 2010. I think my mood affects my experience of Parkinson’s but if one knows it’s a placebo then I can’t imagine it having a positive effect. I would love to be fooled into thinking something was a positive intervention, whether it’s pill or an activity. Optimism and hopefulness and acceptance all seem important. For example, I recently was seen as eligible for Dbs, and I found myself feeling more positive with the hope of some relief from tremor and slowness. But that hope didn’t translate into reduced symptoms. The placebo effect makes sense, Parkinson’s symptoms increase with psychological factors like stress. My symptoms correlate directly with tension and concentration. I don’t know if this response to the question. But hope is such an important factor in our quality of life. What have people done to increase their sense of hope and avoid too much discouragement?
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I don’t know if it’s bizarre but I don’t know anyone else who has it. When I am off I can’t urinate. But it’s difficult to do on 80 now I have to go very badly. So I have to in the night walk up and down three flights of stairs in our house to get drafted you help me do that and then I’m able to go. I wonder if anyone else has hesitant urination. It’s only bizarre because I don’t know if anyone else has it I’ve never seen it mentioned. When my meds are working, I can urinate regularly.
I can urinate regularly.
I’m wondering, if people describing his symptoms mean when they’re in an off state or also when they are in an on state ?
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Correction: that’s what I get for using vocal recognition software. In one of the first first few lines it should read, “I do find…” not “I do fine!”i
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I understand that there is no vulnerability to coronavirus and its consequences based on having Parkinson’s. But I do fine, is that my Parkinson’s continues to be more dominant than the coronavirus in my body’s experience. Not that I’m not concerned and being careful. In some sense I feel solidarity with everyone since I have had to focus on health in a very proactive way for years. What I miss is the camaraderie and support of other Parkinson’s people which I get through rocksteady boxing 2 to 3 times a week. It is good to have this forum to feel connected with the Parkinson’s community. We are all connected to the coronavirus community already! Everyone is.
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To respond to the question about apathy. I feel the app at eight but I don’t know if my colleagues or students do. But I do know that I’m not present very often but I don’t have to be in my office or in around the halls. I have to monitor my time and pace myself. I suspect they definitely know there is a with drawl on my part compare to how i used to work.
I’m glad CBT is working for some of you for a variety of reasons. I may have mentioned that my counselor practices acceptance and commitment therapy, which is mindfulness-based. So instead of countering negative thoughts you just stay in the present and dismiss the thoughts as just your mind speaking about the past or future while your body is in the present.It also requires a lot of discipline and is not perfect.When I remember to be mindful and present it gets me out of those illuminations that are easy when you have Parkinson’s.
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You hit the nail on the head for my experience. I find that I’m always in the “Parkinsons Zone” even when my symptoms aren’t strong. I go into my office at the university and I feel no excitement, just a strange feeling of once having been committed to it. But I plow on despite that feeling of dislocation. It’s clearly dopamine missing. I can tell myself on the thinking level that I care and act well in my job (teaching) but I don’t feel it.
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My tremor was my first indications of Parkinson’s. It was 10 years ago that my pinkie started shaking. I was leading a trip for students to Ireland. Of course constipation preceded it for about 10 years earlier.Now 10 years later it is distinctive in my right leg and my right arm. At this moment I am dictating this message because my finger will not do the work! I find stress, stress, stress is the biggest factor as well as the medication of course. I take one and a half tabs over three hours of carbidopa levodopa
Somebody says that 50% of Parkinson’s is psychological and 50% medication related. I find that to be true. I’m trying to continue to be a college teacher 10 years later. in the middle of most classes I start shaking and I have to plow my way through the rest of the class. I’ll take a class break often and lay down in my office.
Now I am lying in bedAnd my leg is jumping like crazy. when I stop trying to dictate this it will be better if I lie down and rest.
I find mindfulness meditation to probably my best bet as well as of course medication. Social events make my stress higher and my symptoms worse! How to live stress-free? not possible.
But I want to emphasize here is that along with my Tremors there is a buzz of tension or anxiety that comes with being off. Does anyone does experience that physiological buzz or anxiety with the off period?Again I better stop or I’ll be exacerbating my tremors! -
I have a specific question or comment that I’d like to hear from others about. Upon awakening, I burst into tremors right away, even if I had taking my sinemet an hour earlier and gone back to sleep. What do people do in the morning on first awakening? One thing is to worry about things as I feel the tremor start, which sometimes do.(“Oh, another day if this.“) What I am trying to do is a twenty-minute meditation in bed when I awaken. I’ve tried series of Parkinson’s affirmations also, lying there for about 30 minutes listening to them.
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I am hearing wonderful dedication as well as a reminder to do self-care. Today I have a list of about seven things I wish to accomplish but I went into an off mode good morning and couldn’t type for my work not really drive and jump around doing errands. I decided to just be slow as what it was. And wait for the meds to kick in. There’s a really good blog called perky Parkie In which she reminded us to get half the things done we once did. That’s very hard for me, as I make a list every day. But breaks in between, especially when you’re off, are really important. I never took breaks until the evening. I also try to contribute to doing things that I can for my spouse, to make it more even. But we’ve only known each other for five years and I don’t have that record of past contributions in the bank. So I try to push myself – She likes to travel and I find it quite challenging after 10 years from diagnosis. I am sitting here in the middle of the afternoon trying to get my meds to kick in so I can drive around doing a bunch of errors!
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Yes. Acceptance and Commitment Therapy (ACT) is a mindfulness based approach. It emphasizes being present in the moment and being with it rather than fretting or being in the future or past. It is so easy to slip into, “how are used to be when I was without Parkinson “or “why me?”. With ACT One dozen try to dispute those thoughts but rather moves into a present tense mindful breathing focus. Kind of like intentional forgetting of what your mine was doing. It is considered a third wave of behavioral counseling.
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In many ways. I was diagnosed 10 years ago and I’ve watched the progression over those 10 years. It seems like my biggest concern is about my career.As I may have mentioned before, I work as a professor, which allows me to work at home much of the time and to cut back from my long hours that I formerly worked. Due to symptoms,I am anxious about going into class, fearing that my tremor will return and the other symptoms like the “foggy brain” phenomenon.
I’ve gotten some help with accommodations at work like having a teaching assistant in all my classes to take care of the details which overwhelmed me. But I am intimidated from engaging any major complex projects. So I cut back as best I can. But I enjoy the work that I do and the meaning it gives to me. My brother says that I should retire but that doesn’t feel like an option. Maybe he’s right.I also am hesitant about engaging in events, not being sure how I’ll be, whether it’s going to a concert, the movies, or a party. I fear disappointing friends and then being less involved with me. So I try to keep up via text or phone calls and selective social events.I am generally very outgoing So that is a change.
Due to the dopamine deficit, I don’t have the same zest for things that I had. For example, I like to watch sports and I don’t have any excitement about that.
To balance what seems like this tale of woe, I should add that I do enjoy things on some level and I try to not think about the apathy. In other words I try mindful awareness of being in the present moment and appreciating that, such as seeing the sunshine outside the window, the taste of coffee and sweets 🙂
What has remained the same are my social skills and my cognitive abilities. One of my strategies is, “you’ve got Parkinson’s. Get over it.“ I don’t mean this is easy or to be glib but it’s a process of accepting it for life instead of regretting or fighting it. I have no choice! Except in how I focus on the present and the gifts in my life. They include the support of people in my life.
Oh and I see a counselor for Acceptance and Commitment Therapy. She is part of the neurology office that I go to.It helps remind me how to stay engaged and be in the present.
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I feel like I’m one member of the club of trying to slow down and pause and not multitask or many-task!as I look at what I have accomplished in my life and my career, I can rest assured that I did well in many areas and feel good about that meaning was clear when I was raising children and when I was a full-time professor. BUT – as my paid work declines, which gave me great meaning as I said, what do I do instead? I have limited abilities to perform music, which has been one of my meaningful activities, although I can do this in limited ways. Enjoy moment to moment living is good: sunny day, the smell of coffee, and more. But the adjustment to a slower pace and finding activities that are meaningful is my challenge. Perhaps anyone who retires faces that challenge. PD complicates that. Pacing myself is all good, but in my body won’t let me I want to say something in the house or teach a course, I must find another pleasant or meaningful activity. It was easy during the furious days of career and family raising. Now slowing down still provides the challenge of what to aim for. Just some thoughts…
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i just lost a whole message in which i illustrated my day of running from one task to another. The day was then filled with symptoms and dyskinesia. I taught my class while dyskinetic. It is clear that “stress,” which can simply be concentrating on a task, or rushing, or even doing exercise, triggers symptoms AND dyskinesia. The message I am hearing is that we MUST reduce stress. While cutting back on activities, it also means relaxed walking (not rushing), periodic meditation, and evoking calmness in my body instead of plowing on. I got revved up yesterday, which has been my style (doing lots of things fast). I have an understanding boss and an ADA designation, which gives me accommodations for my job. I still have “it” in terms of mental clarity, and want to engage in the work I love. So my mantra must be: “My ambition exceeds my ability.” And that means acceptance. No comparisons to others who don’t have PD. And paying attention to internal cues that i am feeling “tight,” such as when concentrating for a long period of time. I do hear the idea of considering work options. But my work isn’t laborious or noxious to me.
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I keep my house warmer than I ever did, including rooms that I’m not currently using. I have room by room heaters. This would’ve been sent for during the oil prices in my 20s in the 1970s, when we all lived cold to save money and oil and all that. But with PD I feel justified and keep my house warm. Pretending it’s really summer and I’m in the outdoors.
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This is Garrett. I learned that dyskinesia is also increased by stress. So if I start to get dyskinesia and am doing something active or stressful, it gets worse. I have tried to lie down or pace around the house slowly. Instead last night, instead of hiding away, I joined the company of a neighbor who had stopped by. Dyskinesia makes me speedy and slur my words. I plan on teaching my classes and participating is social events while being dyskinetic. I thought only quiet meditation would help. Of course, lowering, not taking any extra cd-ld at that time is also important for ending dyskinesia. Again, severe tremors accompany the tail end of dyskinesia. I don’t know why.
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To all who responded to my initial post. It is inspiring and heartening to hear your words. I want to add an important discovery that I have made. My extended episodes of tremors, involuntary movements, and feeling “speedy” I think are related to engaging in a stressful task when I am feeling a return of symptoms. Even driving at that point. Instead I have intentionally paused to meditate or relax at that point. It has made a difference. Somehow jumping into activity, even if it is merely concentrating on a work task at the computer, revs up my symptoms so that they go on overdrive! My mantra is “No two activities in a row!
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I too am working virtually full-time 10 years after I was diagnosed, which means 20 years after I Started with PD. I am a full-time professor. I can work at home a lot preparing classes and do a research. I teach also and do a lot with meetings and other things like that. I often can’t work. Stress is a significant factor. I need to do mindfulness meditation and gave him a tree relaxation to calm down the symptoms, which worked. I only had to miss one class because of PD this last semester. But I get half the work done that I used to get done. Concentrating on a task increases my symptoms I often can’t type which is the basis for most of my work.I have various symptoms, including what feels like dyskinesia plus tremor when I stay too active and stressed and don’t take it easy. I hope to work for five more years that would be 15 years after my diagnosis and I’ll be 76 years old and I’m now 71. I don’t know what I would do without this work. The scariest thing about Parkinson’s is that you can see the loss of interest, career, colleagues, hobbies, friendships, and even a partner, which makes up the meanings of life. So I’m hanging on by thread but hanging on!