Tagged: symptoms
- This topic has 88 replies, 25 voices, and was last updated 1 day, 17 hours ago by
James Lake.
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AuthorPosts
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May 11, 2019 at 7:19 am #14487
Anonymous
InactiveThe saying goes: “If you’ve seen one case of PD, you’ve seen one case of PD” We are all different in terms of how this disease affects us. For me, my quality of life is most impacted by extreme fatigue. I try not to make too many commitments, especially for the afternoons when I am really tired. What symptom impacts your the most? How do you deal with it?
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May 24, 2019 at 8:54 am #14646
Lou Hevly
ParticipantThe only real symptom that affects me is Restless Legs Syndrome, and the Mirapex pretty much solves that.
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November 3, 2022 at 7:06 pm #25349
Kim
ParticipantI would say right now low back stiffness and pain. If I sit too long or stand too long it flares up. The current meds I take don’t really help it.
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February 3, 2023 at 3:00 pm #25975
James Lake
ParticipantFor me, its the tremors. If I don’t take my lecithin each morning, I will be shaky to the point I can’t use a fork or hold a cup of coffee. With the lecithin? I’m good for 7-8 hours. I take it morning and night.
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May 24, 2019 at 1:49 pm #14650
Anonymous
InactiveLou, that is great that you are able to keep your symptoms under control. I cant seem to shake this total fatigue I experience; now it seems to start as soon as I get out of bed.
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May 30, 2019 at 1:43 pm #14709
Anonymous
InactiveTremor definitely is the worst! Anxiety that comes out of nowhere hard to schedule meals around medication.
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June 5, 2019 at 3:52 pm #14759
Ally
ParticipantMarcus, is the anxiety related to PD or have you always experienced it? I have a hormonal mood disorder that manifests as anxiety and I’m wondering if long-term use of SSRIs to deal with it will be damaging to my brain, but I also don’t want to live with anxiety. Have you found any coping mechanisms that help?
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May 30, 2019 at 1:51 pm #14714
Anonymous
Inactivei do not experience external tremors, only internal. i can even imagine what having external tremors must be like. anxiety is a new one for me, but cbd oil usually can calm me down..
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May 30, 2019 at 5:25 pm #14722
Manuel Fernandez
ParticipantBesides the shattering impact of being diagnosed with PD and undergoing the ensuing effects, there are nevertheless aspects of the resulting new life that, strangely enough, rather improve on our quality of life. Four years ago, when my doctor detected a suspicion of PD she asked me what I was currently doing with my life. I told her I had retired 10 years ago and had spent those years mostly sitting in front of a monitor writing up my research work for publication. She wisely told me: “Well, now you must stop doing that and start using your body. Walk, jump, dance, work with your hands, be active; that’s what your body is made for.” Overburdened with fears then I did stop my editing work and, at 78 years of age returned to my earliest trade: I was originally a carpenter 60 years ago, so I began by building a stock of power and hand tools and began to make small items of furniture I felt were missing in our house. Working with extreme care, my trembling hands did not produce any self-injury when handling power tools and I could even use sharp chisels keeping all my ten fingers intact. Even when PD did not exist for me, I never thought to be able to do/make manual crafts. My garden also benefited from my PD as well as my self-esteem and I must thank PD for that. I have come back to my writing up now but never for more than four hours in the day. Attaching a felt pad below my mouse avoids the effects of my shaking and I no longer get multiple identical characters when trying to key-in just one on my keyboard.
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May 30, 2019 at 7:31 pm #14726
Anonymous
Inactivethat is outstanding Manuel. I am sure your positive outlook has served you well in dealing with this disease.
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June 5, 2019 at 3:50 pm #14758
Ally
ParticipantIt sounds like you have a really wonderful (and astute) physician, Manuel. Thank you for sharing your experience. It will likely help someone else in the early stages of their diagnosis.
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May 31, 2019 at 5:21 am #14728
Manuel Fernandez
ParticipantI was hesitant to write what I wrote Jean. I have two close friends who also suffer from PD and the state is so advanced that it would be utterly impossible to do any of the things I mentioned. Maybe I should have added that everything I do has required special arrangements. I do my gardening mostly sitting on a stool, I am writing this with a pillow on my lap so as to support my arms and keep my hand steady and I always keep at hand a walking frame, although I have no difficulties in walking on my own, albeit hesitantly.
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May 31, 2019 at 5:55 am #14729
Anonymous
InactiveManuel. What you wrote is fine. It can give many of us hope. Your fighting attitude in not letting this disease stop you from living your life is admirable and inspirational. We are all affected so differently by this disease.
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November 7, 2019 at 7:39 pm #16269
TimR
ParticipantFor me it’s tremors in my left hand. The only med I’m on is Azilect, and while it doesn’t completely eliminate my tremors, it gives me hope I can prolong period till I need LDopa.
If I’m busy in my workshop, tremors all but gone. But, if someone shows up and especially if a stressful situation pops up, they can come back mild to ferocious. A few deep breaths or perhaps grab a worry stone from my pocket and things ease up.
Toward end of day, sitting on couch, typically they come back mildly especially when I remember I have PD
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November 8, 2019 at 2:48 pm #16283
Anonymous
Inactivetim, there are several schools of thought on when to start C/L. one is that if it improves quality of life, go for it and hope for a cure soon. others say it can bring on dyskinesia. you seemed to have found something that takes your mind off pd. bravo! the jury is still out for me. I am on c/l and i hate it.
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November 8, 2019 at 3:15 pm #16287
TimR
ParticipantJean, totally get the take it and hope. I hope to for any number of breakthroughs: Halt progression, halt and repair damage/wiring, next wonder drug to be “Platinum standard “ of care vs C/L.
I might be among those who could take a low to moderate dose of C/L for a long time without complications , but being 60, too many potential years left, and still able to do most anything except deal with stressful situations.
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November 8, 2019 at 4:02 pm #16291
Anonymous
Inactivestess wreaks havoc with my symptoms, glad i am retired.. even the stress of extreme weather affects me :0
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November 12, 2019 at 9:33 am #16334
Jo S.
ParticipantStress is horrible for me, too, Jean, including the stress of the changing seasons (especially winter!). Although getting stressed out may not be a symptom in and of itself, it certainly makes all the other symptoms much worse (particularly tremors).
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November 12, 2019 at 1:15 pm #16343
Anonymous
Inactivejo, heavy humidity and heat do me in to. i find i stress a lot more now since i have pd 🙁 i feel like i have lost my strength and feel weak, therefore vulnerable and stressed
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November 12, 2019 at 1:56 pm #16354
Jo S.
ParticipantYup. Everything stresses me more too, Jean, and I also feel weaker and more vulnerable. Exercising helps me feel stronger (even if I’m not, really), but I still feel vulnerable.
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November 12, 2019 at 2:10 pm #16358
Anonymous
Inactivejo,
vulnerability, something i have not really felt prior to pd…
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November 12, 2019 at 2:17 pm #16360
Jo S.
ParticipantJean, I’ve always been small (but mighty!), so I guess I’ve always felt a bit vulnerable. But, yes, PD definitely makes that (and everything else) so much worse.
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November 12, 2019 at 5:59 pm #16365
Anonymous
Inactivejo, yes it does, if one is having a bad day, is it the weather, is it the stressful situation you just had, is it something you ate, was it a bad nights sleep, timing of meds and eating…
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November 8, 2019 at 8:33 pm #16296
HMargulies
ParticipantLeg rigidity and toe curling are high on my list of misery producing symptoms. It makes walking difficult and has gotten so bad that driving is now near impossible; it’s my right leg that’s affected. I actually used to enjoy driving. Now I have trouble lifting my leg off the accelerator and pressing down on the brake. Tremor is obviously unpleasant but this aspect of PD is unexpectedly problematic.
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November 8, 2019 at 8:35 pm #16297
Anonymous
InactiveHM
sorry to hear of your struggles. Is your right arm impaired as well? My dominant side is right, luckily, it is my left side affected by pd
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November 9, 2019 at 6:50 am #16299
HMargulies
ParticipantYes, Jean. My right arm now has a life of its own. Putting on a jacket is now a hilarious production where I try not to look like a challenged five year old. Sometimes I think to myself, I once knew how to put on a jacket, right? Also, here’s a weird thing: my handwriting has gotten extremely teeny–but I can still draw cartoon illustrations in the same style I used 30 years ago. This is some wacko disease.
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November 9, 2019 at 7:26 am #16300
Anonymous
Inactivehi HM, i have the same problem with my left arm where putting on a jacket is a challenge. i am writing a blog about getting dressed with pd which should be published in january which you may relate to. sports bras are my true nemesis LOL
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November 10, 2019 at 2:25 pm #16308
Carol Rothfeld
ParticipantTremors and balance problems are most difficult for me. The tremors that started in my right hand seven years ago have progressed to both hands and legs and sometimes I feel it in my core.
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November 10, 2019 at 2:27 pm #16310
Anonymous
Inactivecarol, thnx for sharing. i have had internal tremors and it really sux… people think you are fine, but you are falling apart inside.
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November 10, 2019 at 2:31 pm #16311
Carol Rothfeld
ParticipantI “love” it when someone says but you look fine. I have been breeding show cats since 1980. I can no longer go to shows because of the balance problem I can’t carry my cat to a ring and use the walker. My husband and I are now thinking of placing most of my show cats in pet homes.
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November 12, 2019 at 10:29 am #16337
HMargulies
ParticipantHi Carol. Your comment “I “love” it when someone says but you look fine” really hit home. A friend who is dealing with late-stage lymphoma was told just that by a stranger who questioned the legitimacy of her handicapped parking pass! People can be really dumb–of course, until it’s affecting them. Empathy is a dying trait in modern humanity.
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November 13, 2019 at 10:32 pm #16393
Ally
ParticipantThat’s awful. I wish people would be more mindful of the fact that disability isn’t always visible. How did your friend respond when that happened? My friend has PF and always worries about people judging her for taking elevators etc. when she doesn’t have her portable oxygen with her because she looks young and healthy. In fact, she’s not. People need to be less judgmental.
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November 13, 2019 at 10:33 pm #16394
Ally
ParticipantCarol, this is off-topic but I LOVE cats and would love to hear more about your experience breeding and showing them!
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November 11, 2019 at 8:17 am #16314
Anonymous
Inactivecarol, i am so sorry to hear you may have to give up your cats. it must be a very difficult decision for you
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November 12, 2019 at 9:29 am #16333
Jo S.
ParticipantFor me, extreme fatigue (usually in the afternoon and early evening) is a huge problem. I don’t want to go out in the evening because I might fall asleep standing up (or sitting down). I’m used to my tremor (I’ve lived with essential tremor for 20 years prior to my PD tremor and diagnosis), and although it’s a royal pain in the butt, I’ve learned how to manage and work around it for the most part.
Considering everything, though, I guess I’d have to say that restless legs syndrome — mostly at night but also often during the day! — probably impacts my quality of the life the most (along with insomnia). I’ve got lots of other symptoms that are terribly intrusive as well, so it’s tough to pick just one! 😀
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November 12, 2019 at 1:17 pm #16344
Anonymous
Inactivejo, you are so right, there is a plethora of troublesome symptoms to choose from. my latest is my ability to swallow and speak without slurring..
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November 12, 2019 at 1:50 pm #16352
Jo S.
ParticipantI was going to mention swallowing and speech, Jean … but I started speech therapy a couple of weeks ago, and I’m optimistic that will help on both fronts. I don’t have slurring — but I do get hoarse and have soft speech. Are you able to go to speech therapy or is that too far to travel for you?
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November 12, 2019 at 2:09 pm #16357
Anonymous
Inactivejo, yes, i am in process of looking for a speech therapist, ithink i will need to go a few times, then i can do exercises at home… one more thing to add to the list… good think i am retired.
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November 12, 2019 at 2:19 pm #16361
Jo S.
ParticipantThat’s great, Jean — good for you! They are giving me exercises to do after each session, along with lots of helpful tips. Doing the exercises (they take a fair amount of time!) and following the tips is the hard part. You’ll be glad you did it. The speech therapist asked me what I would do if I retired (I’m still working full time), and I said, “Devote my retirement to PD stuff — exercise, support groups, therapy, etc.” Honestly, it’s a full-time job having PD, isn’t it?!
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November 12, 2019 at 5:57 pm #16364
Anonymous
Inactivejo
i give you a lot of credit working full time with this disease. i dont think i could do it. you are right, having PD is a full time job. i had planned to cut back on my workouts when i retired from my 9-5 job ( I was a cyclist and a dancer). then pd came along…
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November 13, 2019 at 6:45 am #16373
Jo S.
ParticipantYou were a professional cyclist and dancer, Jean? I’m in awe!!!
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November 13, 2019 at 10:37 am #16377
Anonymous
Inactivejo, no need to be in awe 🙂 i was never a professional as i had a day job that paid the bills. i danced with a local company in the 1980s/1990s and my late husband was an Ironman triathlete, so i was always surrounded by and trained with athletes.
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November 13, 2019 at 3:24 pm #16384
Jo S.
ParticipantWell, I’m in awe of you anyway, Jean! 😀
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November 13, 2019 at 3:30 pm #16385
Anonymous
Inactivejo, mutual admiration club LOL i just saw your post on your workout routine. i got tired as i read it!
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November 13, 2019 at 3:36 pm #16386
Jo S.
ParticipantLOL! I’m glad my routine sounds impressive. 😀 Some days I skip the walk or mini tramp (it’s so hard to get motivated, especially later in the day for me), but I try to keep on track most of the time. Still, dance is such a beautiful art form as well as great exercise, and moving to music is wonderful for PD. Do you still try to dance?
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November 13, 2019 at 3:42 pm #16387
Anonymous
Inactivelack of motivation plagues me.. as for dance, i have not gone back to it, i have lost so much to pd; balance, rhythm, flexibility, it frustrates me so and i start getting stressed out. i am enjoying my boxing classes though it is getting harder and harder to do them 🙁
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November 13, 2019 at 3:44 pm #16388
Jo S.
ParticipantI’m so sorry that PD took dance away from you and that boxing has become more difficult as well. :'(
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November 13, 2019 at 3:54 pm #16389
Anonymous
Inactivethank you Jo, my issues are no worse than any others who have PD. PD is a crushing disease of loss and everyone suffers in their own unique way.
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November 13, 2019 at 4:11 pm #16390
Jo S.
ParticipantSadly, that is so true, Jean.
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November 21, 2019 at 9:50 am #16566
Garrett McAuliffe
ParticipantI 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!
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November 12, 2019 at 1:35 pm #16348
James Harvey
ParticipantFatigue and insomnia are my major problems. For insomnia, I installed blackout blinds so I could sleep in the morning. Also, I have recently tried eliminating caffeine (e.g., chocolate) after 3 pm and having a schedule of events leading up to being in bed by 11 pm. My schedule is 4pm home exercises, 6pm dinner, 8pm aerobic exercise (treadmill, etc), 10pm prepare for bed. Of course the schedule is not absolute but I try to adhere.
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November 12, 2019 at 1:54 pm #16353
Jo S.
ParticipantFatigue and insomnia are killers for me too, James. I’m up at 4:30 a.m. to do yoga (although I’m usually awake long before that). I try to get my exercise done early in the day, as by afternoon, I’m too exhausted to do it. I also installed blackout curtains in the bedroom — best decision ever (or one of them, at least). By the time you’re ready to do your nighttime aerobic exercise, I’m getting ready for bed! 😀
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November 13, 2019 at 10:34 pm #16395
Ally
ParticipantHi Jo, were you always an early riser or is that something new?
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November 14, 2019 at 6:33 am #16398
Jo S.
ParticipantHi, Ally. I’ve always been an early riser … just not THIS early! 😀 Insomnia was among my (many) first symptoms several years ago. Now I start to fall over (not literally fall, but fall asleep fall) around 7:30 p.m., though I force myself to stay awake for another hour (if I can). Of course, the irony is that I wake up in the middle of the night, eyes wide open, for hours on end.
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November 12, 2019 at 1:39 pm #16349
Anonymous
Inactivehi james, thanks for sharing. has your schedule helped with your fatigue and insomnia?
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November 12, 2019 at 6:56 pm #16366
Frank Mundo
ParticipantWhat has your neurologist told you about swallowing ?
I am very interested in swallowing. 90% of PwP’s experience swallowing problems at some point during their illness. What advice has your neurologist given you an the following points:
1. How to determine whether or not you have a swallowing problem? The symptoms,tests that can be run,
2. Are there any strengthening exercises or therapies to improve swallowing?
Thanks for your help.
Frank
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November 12, 2019 at 7:13 pm #16367
Anonymous
Inactivehi frank, neuro gave me rx for swallow test and speech therapy. i have a problem swallowing pills and sometimes, i get food stuck in my throat. i always have a glass of water nearby when i eat. swallow test showed some atrophy since i had radiation to the neck in 2007, but otherwise normal. however, i know i have a problem swallowing, hence the speech therapy rx.
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November 12, 2019 at 8:52 pm #16368
Anonymous
InactiveHi frank, I forgot to mention, if you go to a speech therapist, try to find one certified in LSVT. https://www.lsvtglobal.com/Therapists_Professionals They specialize in working with pd patients
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November 12, 2019 at 9:00 pm #16369
Frank Mundo
ParticipantThanks Jean. Did the speech therapist offer any exercises to strengthen swallowing muscles or expiration muscles? or provide any tips or advice on how to handle your swallowing, like for example how to prepare food or position your head when you try to swallow?
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November 13, 2019 at 6:44 am #16372
Jo S.
ParticipantHi, Frank. I’m going to speech therapy as we speak (actually, I’m leaving for there in a few minutes). Yes, the therapist will give you tips (and homework!) for how to strengthen your swallowing muscles, how to prepare food, and how (and what) to eat. Make sure you go to one with a neuro background or specialty in PD. It will be well worth going!
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November 12, 2019 at 9:28 pm #16370
Anonymous
InactiveFrank. I am still trying to find a speech therapist. (I live in the sticks lol). Have u googled or searched in utube for answers to your questions. There seems to be videos on how to do anything in utube.
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November 13, 2019 at 5:56 am #16371
Gregg I Daniels
ParticipantI am 69 and have had PD for almost 8 years. Right hand tremor and difficulty staying asleep are the problems. I take 4 c/l tabs a day and azilect. We are getting ready for a major move and my 44 year old learning disabled daughter who is also mildly schizophrenic has been living with us for the past year. Stress certainly increases the symptoms. I have always been active and moderately athletic so I try to stay in shape as best possible. I raced motorcycles until I was 58. I no longer race but still ride street motorcycles, dirt bikes and mountain bikes. The c/l works fairly well but I am at the point of needing to increase the dosage. Seriously considering dbs within the next year to better control the tremor. I am not ready to give up the motorcycles and downhill mountain biking. The need for speed is inborn I guess.
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November 13, 2019 at 10:34 am #16376
Anonymous
Inactivegreg, isnt it ironic how this disease gives us symptoms that impact one of the things we love to do… in your case, you love speed and one of the symptoms of pd is bradykinesia (slowness of movement), in my case, loss of balance as i was a dancer . you are fighting the good fight… power to you.
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November 13, 2019 at 10:38 pm #16396
Ally
ParticipantHappy to hear you can still enjoy some of the activities that bring you joy, Gregg. 🙂 I hope that remains for a long while yet.
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November 14, 2019 at 2:53 pm #16415
Joe Ferguson
ParticipantI was getting some ED in the year before dx, but it was not total. My spouse and I were actually managing pretty well in spite of it. The first year and a half after dx remained the same. Then recently it went out pretty badly and now I can clearly state it has negatively affected our quality of life! I had been calling my increased drive the silver lining of my PD cloud, and thinking positively that way, but going forward I’m not sure how I’m going to look at this. I have been faithfully doing the hard exercise since my dx 18 months ago, so I am doing my part in good faith!
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November 14, 2019 at 3:07 pm #16419
Anonymous
InactiveJoe I am glad you have a supportive spouse… if you take a look at all the responses to this post, we are all so different with our symptoms.. crazy disease
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November 14, 2019 at 4:10 pm #16431
Russ Hudson
ParticipantMy PD symptoms have been cured. How? Butyric Acid supplements. I take 12 pills a day, and I feel great. I highly recommend it ….
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November 14, 2019 at 4:33 pm #16432
Jo S.
ParticipantRuss, do you not take any PD medications at all? What brand of Butyric Acid do you take? That’s a lot of pills — how do you spread them out throughout the day? Did you ever take PD meds? If so, did you take the Butyric Acid along with them? Please tell us more!
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November 15, 2019 at 3:14 pm #16458
Russ Hudson
ParticipantI don’t take any PD medicines at all. In September 2018, I decided to Google PD symptoms, as my left thumb kept twitching and I had other symptoms. I found I had most of the symptoms. I then decided to Google, “latest treatments for PD,” and that’s when I found this article. https://www.foundationalmedicinereview.com/blog/the-potential-of-butyric-acid-as-an-alternative-treatment-for-parkinsons-disease/
I buy butyric acid pills on line from jigsaw health (Butyrex® by T.E.Neesby). I take six pills in the morning and six in the evening. All my PD symptoms have abated, including the tremor in my left thumb.
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November 21, 2019 at 1:21 pm #16586
Anonymous
InactiveRuss I am glad u found relief. It seems like there are mantpy people that get symptom relief from various supplements. Unfortunately, I have tried many but none seem to work
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November 21, 2019 at 1:26 pm #16587
Anonymous
InactiveGarrett
apathy is a pd symptom. I am glad u find joy in your work. It is probably better than any drug for u.
Stress always exacerbated my symptoms too. Hang in there….
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November 23, 2019 at 5:39 am #16636
Dan
ParticipantMuscle rigidity, motor function. Many tasks are becoming just beyond my ability to do. No more climbing on the roof, guitar is difficult, hunting is out. Mechanical repairs, additions to trucks and 4×4 vehicles result in questions like “What in the world?”
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November 23, 2019 at 6:18 am #16637
Frank Mundo
ParticipantI was diagnosed in 2014. The most annoying symptom then was dragging the heel of my left foot. Top one these days has to be urinary urgency. Amusingly appropriate is the label “latchkey incontinence” as it manifests itself in its most extreme form when I arrive home and pull in the garage . . . requiring a virtual sprint to the bathroom when I arrive. I’m sure its related to some sort of “conditioning.” Mornings are worst times, when my dopamine level is low.
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November 23, 2019 at 7:48 am #16645
Anonymous
Inactivedan, i can relate to loss of motor skills, my typing and handwriting are horrendous and when i tried to play ukulele, i could never tell if my fingers were hitting the chords..
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November 23, 2019 at 7:50 am #16646
Anonymous
Inactivewow frank, i totally relate to urinary urgency. it always gets worse the closer i get to the bathroom. if you figure out proper conditioning for that, LMK.
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November 23, 2019 at 3:00 pm #16650
Laura
ParticipantThe symptom that impacts me the most is definitely my balance issues, it makes it hard to walk and move around freely. When I’m out I usually always walk with my hand on someone’s arm for reassurance, but for those rare occasions now when all my meds are hitting the mark at the right time, then I will walk completely on my own for as long as it last. Also, like many have said already, there’s the bladder issues and extreme fatigue, which starts by late afternoon, if I sit down doing nothing, I will start to fall asleep, so I try to keep busy till at least early evening, most nights I fall sound asleep between 8 -10. I will sleep about 5 hours, then I wake up realizing it’s not the next morning, lol, now I’ll be up for hours. I’ll get up and do things, to stay busy, that I would have done if I hadn’t fallen asleep like wash and dry clothes and ironing. I’m dozing off right now as I type, tme to close my eyes.
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November 23, 2019 at 3:05 pm #16651
Anonymous
Inactivelaura
thnx for sharing. it is amazing how we are all so different in our experiences. my fatigue does not make me sleepy, just a feeling of i cant move or do anything.
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November 26, 2019 at 10:01 am #16690
Dan Freedman
ParticipantFor me, it is the recognition that my carbidopa/levidopa medications have effects on my moods. While it might sound nice to be able to dial oneself up or down in terms of mood, it does beg the question (within me at least) about who I truly am. I try to observe myself and my mental reaction to medication, but there is always a question: Who is making this decision (whatever it is)? Me, or the meds.
Dan
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November 26, 2019 at 11:43 am #16700
Maria Cesena
ParticipantI’m relatively new to this site and am joining rather late to the discussion about what PD symptom most impacts the quality of my life and I’d have to say it’s the severe insomnia. I’ve just recently been officially diagnosed with PD but was told that I’ve probably have had it for the past 12 to 13 years with relatively mild symptoms, well, what the neurologist considers mild symptoms.
I’ve had severe, extreme insomnia that is resistant to medication, natural supplements, holistic medicine, alternative therapy like acupuncture and etc., etc.
This, of course leads to chronic fatigue. I continue to work but it’s with a huge effort. This upcoming Saturday I will be celebrating my 53rd birthday. If, I could retire with full medical benefits and at a reasonable monthly pension benefit at 55-years old I’d feel a bit better.
Because I’m so exhausted all the time, I’ve become a virtual introvert. I literally have not had a date in six-years since my divorce in 2013. My companion is my cat, Mozart. I have two adult children,one who lives out of state and the other extremely running his own business. I don’t mind too terribly they don’t have much time for me.
I’m too tired to engage in my once favored activities. PD is so life-altering. However, my daughter has told me not to let it define who I am. So, it’s just another component of my life. It’s rather simplistic of her to say.
I pray for the day that I can sleep for more than 2 to 3 hours at night. It affects all aspects of life. How can I trust myself to drive, my memory, to make important decisions, to keep my body well so the other PD symptoms aren’t so problematic. Sleep is so important for our well-being. This extreme insomnia has taken away any semblance of normalcy in my life.
It can’t be a unique experience to me. Others with PD must have encountered this issue at some point or another though I understand PD is different for each and every one of us.
I would like to engage in life once more and perhaps even venture out of my introverted self. Any stories, encouragement, or solutions?
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November 26, 2019 at 12:01 pm #16701
Lou Hevly
ParticipantHi Maria:
I’m 70 and was diagnosed with PD 4 1/2 years ago. Most of my symptoms are mild, but my Restless Legs Syndrome gets really bad if I don’t take meds. I have sporadic periods of insomnia, occasionally staying awake all night. Lately I’ve been sleeping better, perhaps due to a med schedule change. Specifically:
6-8am 1/2mg Sinemet, 0.26mg Mirapexin
1-3pm 1 mg Sinemet
7-9pm 1 mg Sinemet, 1 mg Azilec
12-1am (just before bed) 1/2 mg Sinemet
You don’t mention what your other symptoms are nor what anti-Parkinson’s meds you’re taking. This might be good to know. Part of my insomnia is due to not being able to get into a comfortable position –I toss and turn– but I think this may be a PD symptom so I’ve started taking half a Sinemet tab just before bed.All the best,
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November 26, 2019 at 12:55 pm #16704
Jo S.
ParticipantHi, Maria. I can totally relate to what you and Lou said. Insomnia and restless legs are killers for me. Here’s what I’m currently taking before bedtime: magnesium citrate, C/L ER (two of them, per my doctor’s suggestion), melatonin, and medical cannabis. This combo sometimes helps, sometimes doesn’t. The RLS typically kicks in by 4:30 a.m., if it hasn’t lng before then. When it does, I have to get up and move (exercise). I am SO frickin’ exhausted most of the time — I can’t even express how tired I get during the day. I know my husband is tired too as a side-effect of my kicking, trying to get comfortable in bed, and getting up at unholy hours of the night.
I also still work full-time (I’m 65), and it’s tiring working and also dealing with PD (which is a full-time job in and of itself). I’m naturally an introvert, but I do like to socialize a bit. However, making plans for the evening is almost impossible, as by 7:30 I typically am ready to fall over (literally!).
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November 26, 2019 at 1:56 pm #16707
Anonymous
Inactivedan, that is an interesting symptom, one that has not affected me. we are also different in our manifestations of the disease
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November 26, 2019 at 2:00 pm #16708
Anonymous
Inactivejo and maria,
insomnia sounds awful… i am blessed do not suffer from that. although i am exhausted when i wake up and the fatigue wears me down, but, i am thankful i can still look forward to falling asleep at night and forgetting about pd for a few hours.
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November 26, 2019 at 2:54 pm #16719
Mary Beth Skylis
KeymasterMaria,
Have you discovered any strategies that reduce insomnia?
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December 2, 2019 at 5:08 pm #16809
Vickie Paul
ParticipantOne of my exercise instructors recommended a magnesium supplement for my restless leg syndrome. I take M.Oxide, 250 mg once a day at bedtime. I also get 150 mg in my daily multivitamin. It has helped tremendously.
Right now my biggest challenge is freezing and slowness. It takes forever to get out of bed, or the car, or up from the couch. When I get upright and balanced, then I have to wait to get unfrozen.
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December 2, 2019 at 5:12 pm #16811
Anonymous
Inactivevicki, i take magnesium also, not sure if it helps but i do sleep good (always have). my slowness is almost comical. the winter is the worst since i wear so many layers. the other day, i was trying to figure out how to put on my pants, i had to sit down for about 5 minutes fiddling with trying to get my legs through the pants. i wish i had a video of me doing that. i am sure it would have been hilarious. i felt like i was in a vat of molasses!
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December 3, 2019 at 5:09 pm #16831
Alan Ascher
ParticipantConstipation is the least talked about, and most bothersome to ME…..Always gotta’ know where the bathroom is….then you find it..and then you can’t go! What the hell is THAT about…. Of course “sticky feet” in the shower and at a stop light is another symptom I hate……
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December 3, 2019 at 5:11 pm #16846
Anonymous
Inactivealan, thnx for sharing. luxkily xonatipation has not hit me yet… did u know there is an APP call Flush that uses GPS to tell you where the nearest public bathroom is.. invaluable!
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November 19, 2021 at 2:08 pm #22400
Alan M
ParticipantREM-RBD and cognitive decline (S/T memory loss) — the latter makes my work even trickier.
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