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What PD symptom impacts your quality of life most?
The 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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97 Replies
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The only real symptom that affects me is Restless Legs Syndrome, and the Mirapex pretty much solves that.
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I 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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For 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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Hello, James. What is lecithin? Some suplement?Is it really helps with tremor?
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Fatigue is my biggest problem now. I have been taking Adderall for quite some time which helped a lot. That and a nap did the trick. I can’t get Adderall now because of the shortage so the doctor gave me Ritilin. It does not work the same and is gone by noon. I exercise hard at least 3 times a week if not 4. I end up going home to lie down afterwards because I just can’t keep going. I don’t know what to do.
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Karla Burkhart, My neurologist stated me on Modafinil 100 mg. One in the morning, and one at noon. I work out as well, and it has really helped with the fatigue. Keep moving:)
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I would say right now the thing that bothers me the most is my low back pain I cannot bend or reach without grabbing pain. I’ve gone to physical therapy, acupuncture, chiropractic, and have taken over the counter pain relievers, but nothing seems to help. It’s very discouraging.
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Lou, 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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Tremor definitely is the worst! Anxiety that comes out of nowhere hard to schedule meals around medication.
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Marcus, 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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i 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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Besides 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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that is outstanding Manuel. I am sure your positive outlook has served you well in dealing with this disease.
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Well done!
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It 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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You sound like you’ve licked the worst symptoms, Manuel! Well done, matey! I think ou will never regret listening to your clever GP.
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I 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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Manuel. 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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For 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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tim, 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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Jean, 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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stess wreaks havoc with my symptoms, glad i am retired.. even the stress of extreme weather affects me :0
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Stress 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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jo, 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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Yup. 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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jo,
vulnerability, something i have not really felt prior to pd…
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Jean, 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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jo, 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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Leg 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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HM
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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Yes, 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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hi 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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Tremors 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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carol, 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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I “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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Hi 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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That’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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Carol, 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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carol, 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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For 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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jo, 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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I 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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jo, 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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That’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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jo
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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You were a professional cyclist and dancer, Jean? I’m in awe!!!
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jo, 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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Well, I’m in awe of you anyway, Jean! 😀
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jo, mutual admiration club LOL i just saw your post on your workout routine. i got tired as i read it!
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LOL! 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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lack 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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I’m so sorry that PD took dance away from you and that boxing has become more difficult as well. :'(
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thank 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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Sadly, that is so true, Jean.
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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!
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Fatigue 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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Fatigue 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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Hi Jo, were you always an early riser or is that something new?
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Hi, 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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hi james, thanks for sharing. has your schedule helped with your fatigue and insomnia?
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What 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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hi 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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Hi 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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Thanks 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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Hi, 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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Frank. 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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I 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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greg, 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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Happy 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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I 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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Joe 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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My 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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Russ, 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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I 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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