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What PD symptom impacts your quality of life most?
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Russ 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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Garrett
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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Muscle 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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I 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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dan, 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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wow 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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The 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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laura
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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For 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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I’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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Hi 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,
Lou-
Hi, 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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I can totally relate, Jo. I had to stop working (retire) to deal with my RBD-related symptomology. It seems to affect much of my abilities to “do life”. I wish I could get on top of it, but most things I’ve tried (magnesium, melatonin, Sinemet timing, Vit. B 1) haven’t helped me much.
But I shan’t give in. I’ll beat this somehow…
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dan, 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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jo 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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Maria,
Have you discovered any strategies that reduce insomnia?
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Insomnia: I’ve had this for the past 3-4 yrs. without having a diagnosis of PD. Now diagnosed, a friend suggested I try CBD oil. She gave me a small bottle to try, I tried, and it didn’t work. But something told me not to give up on this. So, I researched another brand, and found one that seemed very professionally produced: Mellow Organic. I tried it and it helps a great deal. Now getting about 5-6 hrs. per night. I believe the ‘trick’ is not to give up too soon. I took Mellow for about 2-3 weeks before I saw my results. Now, take it every night when I go to bed (about 9:30) and again if I wake up about 3:00am. This is a Thailand product (where I live), so I don’t know about USA distribution. But if interested, can contact them to find out. It’s worth it! https://www.melloworganic.com/
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One 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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vicki, 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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Constipation 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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alan, 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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REM-RBD and cognitive decline (S/T memory loss) — the latter makes my work even trickier.
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I wish I had but one primary symptom to elude to… I guess mine fall under a cluster of related symptomology(s) of cognitive impact. Mostly RBD-related, memory falters (why did I come into this room?), failing spatial perception, loss of tactile abilities (i.e. dropsies) and tracking effective human communication (i.e. my partner speaks to me in English and I tend to hear her in dumbass).
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My biggest annoyance is from what I’ll call “tired eyes syndrome”. My eyes always feel tired. It doesn’t hurt, but it is always distracting. It limits the length of time I can spend reading at a stretch. Since I can’t drive because of strength and coordination issues, this a major limitation. I also have myesthenia gravis so can’t tell for sure what is causing the problem. I often walk with a shuffle which I can mostly control if I pay enough attention, but if I could fix either the eyes or the walk, I would fix the eyes. Both of my neurologists and my optometrist are a bit baffled. My optometrist prescribed middle distance glasses for wearing around the house on the theory it will help the eyes to not have to change focus as much and therefore be less tired. No changes after a few days of wearing them.
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For my husband the problems that affect his quality of life at this stage are several. It is hard to pick out a worst. So many seem to be present at this time. The most embarrassing right now is the grooming. it is so profuse and makes such a mess. We try to use a mask under his chin with paper towel to catch the drooling but that does not work well. Does anyone have any suggestions on how to manage the physical aspect of drooling. The neurologist is going to try Botox but the daily living with the grooming is frustrating.
Another problem that has developed over the last month or so is incontinence. He is having less control each day.
He also has a very unstable blood pressure which may drop to almost nothing and he will pass out, I lay him on the floor and he comes back. Other times his BP is very high.
The neurologist said yesterday that he is now in an advanced stage of PD.
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Dystopia. Whilst it sounds like the latest album from “Muse”, it’s a lot less fun.
I get more rigidity than tremor, particularly in my right calf muscle and left foot. I wish I’d never seen the DeNiro/Williams movie “Awakenings”; whilst it’s a beautiful and heartwrenching movie, it’s also a true story and therefore I fear somewhat prophetic.
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