Understanding Progression in Parkinson's disease

[@ParkysPlace]

Five year warrior here. (left side) I began Lock Sport to fight it. Engaging in physical and mental activity definitely helps. Diet is also important. Don't eat junk food. If you have Parkinson's, the way to deal with it is to fight each day one at a time and not give up. Parkinson's is it's own paradox. It degrades your movement, but the way to improve your condition is to be mentally and physically active. With proper medication (CL), my Parkinson's is about 1.8. Without medication, I would be in stage 4. Living with it is scary and frustrating. I cannot plan for things, because I have no idea how I will feel come that day. Proper sleep is rare, even with sleep meds, there is no guarantee. I could go on and on, but I think the message is clear: Parkinson's sucks, but you can fight it.

[@Peter-gu4zc]

Great presentation. Thank you! Question: for last 5 years my wife has hand tremor periodically L>R when holding a cup or plate with fingers of floppy/relaxed hand. The liquid in the cup or food on the plate end up on the floor from shaking. When she squezzes the handle of the cup with her fingers, the tremor decreases or goes away. She has poor sleep, but not other classical symptoms. Is it a sign of Parkinson's? Any hope for reversing it with the passage of time (fasting, organic whole food, sleep, exercise)? Thx.

[@JohnMcCreery]

Excellent presentation. I am a white male American, 80 years old, who has lived in Japan since 1980. Happily married for 55 years. Diagnosed in June 2023, feel like I am somewhere between stage 1 and stage 2.

[@nanelgonowon5448]

This is very informative but yết depressing im in a honeymoon stage by taking Levodopa + Carbidopa is a high felling a lot of enery i love doing housework cooking cleaning etc. i can do biking earobis exercise stay active. I hope and pray to God that my pd will slowly progress. Think Positive God is good all the time.

[@billmather4422]

We are given a terrible prognosis - life will get harder, until we can no longer function. This is more than depressing it requires us to submit to the dreadful, inevitable decline into helplessness. This makes a positive mindset impossible - and this is bad for mental health and meeting physical challenges. I have reversed my PD. I was in stage 4 - unable to walk without aid, unable to dress, with no energy and poor sleep, inexplicable pains, having regular hallucinations, suffering from double incontinence, unable to walk stairs, periodically bed-bound, told (80%) to expect dementia in 2 to 3 years. Now I can walk 4 miles non-stop without aids, travel by public transport, work, sleep well, never fall, have good energy and feel positive. Nothing is inevitable - someone tell this pessimistic soul.

[@hipeople5157]

Yes, and how did you do that?

[@richardgonick931]

Very informative yet depressing. I’m 2 years in since diagnosed in Dec. 2021. With the luxury of hindsight I most likely had earlier onset of years ago.BTW I also was recently diagnosed with prostrate which complicates treatment and therapy decision s concerning Parkinson’s.

[@PondPlace-dc1fg]

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[@lenas5613]

I've been doing physical therapy for balance and strength ...it has helped!

[@angelakindon9839]

So clear! Thank you, thank you, thank you.

[@GoProGoalieUzi]

What can one do to increase comfort and mobility while sleeping? Can’t turn onto side, it’s very difficult and takes a lot of effort..

[@TheOriginalKilamanjaro]

What helped me is having a satin type night gown. It's easier to slide from side to side. If I have any other material on I can not turn. I can only sleep on my sides because my back is bent & won't straighten. If you're a man there might be some kind of slippery material in men night clothing

[@mariarodriguezaz]

Thank you! Any more tidbits of ha ks or things that help with mobility and stuff?​@TheOriginalKilamanjaro

[@shenoyalavoor3388]

Really well presented

[@DavidOlsen-e3n]

I’ve had Parkinson’s since 2017 now I have the tremors that’s normal for Parkinson’s but stuttering. I lost my sense of smell and lately I find my balance and I’m falling backwards but I’m able to catch myself thank goodness for that and I have my eyelids don’t open all the way and I always had since I was a kid bad Eye coordination so when I have to look from one side to the other, I don’t move I can’t move my eyes. I move my head. I was wondering if this is part of Parkinson’s or if it’s the onset of something worse like PSP or something like that if you could send me back a comment or an answer greatly appreciated. Thank you very much.

[@holder868]

This was very nformative.

[@jen9774]

@user-rl2se4bt1q ... my husband had problems with his eyelids closing and he battled to opened them. He was sent to a neurologist who gave him botox injections around the eyelids every 3 months. But it really helped him.

[@TheOriginalKilamanjaro]

Im bent forward real bad. Cant stand straight at all. Have the rigidity kind. Very stiff. Pain. Everything I do I have to think of each step. If i turn near a wall or anything, my face gets knocked into it. I dont have any tremors tho. Fell in Nov of 23 & still hurt on my arm. Never went to dr for it. Im exhausted with it. I have the poker face too. Always looks like im mad or upset. I dont have a real dr for the Parkinsons. Just a nurse practiciner. Dr has me on carbo/levo. 1 pill a day is all i take because at 1st they had me on 6 pills right away. Which i noticed had me going crazy, had to sit in chair & run with my legs. So i slowly took myself off 1 by 1 till im down to 1 a day. Was diagnosed when i was 45. My thinking is slow now, conversations i cant hardly do on phones. My brain doesnt connect what people are saying or i cant hear them. My ability to smell has definitely changed, taste too. High anxiety & depression & irritability. Does a person need a special dr to help them keep goin longer?

[@fca401]

You would definitely benefit from seeing a specialist by which I mean a neurologist who specializes in movement disorders.

[@carbonejack]

Terrific presentation, in common language I could understand. Scary for me because I have late onset non-tremor symptoms. Prognosis for me is no good.

[@RobGrant-cu5uy]

How about focused ultrasound to fix tremor

[@Gary_Texan_USA]

Excellent presentation of a complex clinical study. Thank you.

[@sheilabostock6566]

So very helpful.

[@sannox01]

Really informative. My other half was diagnosed at 46 (in 2012) had DBS under 18 months ago and has since progressed to stage 4 and is currently showing sings of some pre DBS symptoms returning. Progression studies always seem to assume the onset of PD, or diagnosis if you like, as being in the later years of life, I wonder if there have been studies in early onset PD and progression when DBS is involved.

[@caraogg6230]

Constipation out of nowhere, then vitamin deficiency potassium significant drop in blood pressure while standing, drooling while be awake. Thought might be Sjögren's

[@rossmiles7169]

Interesting but very Depressing...

[@PondPlace-dc1fg]

Friends wife is a CNA. Had to have all the vax. Now has pd symptoms. To the fall stage. Cant swallow food etc. Anger .. memory loss... Refuses to believe could be PD.