My mom (57) was diagnosed with early-onset Parkinson's at the age of 49. During the past 2 years, I have noticed that her disease has progressed from Stage 1 to now, Stage 2. More frequent falls, stooped posture, gait, and more tremors during "off" times. She can still do daily tasks on her own but seeing this progression makes me extremely worried and scared of the disease progressing. I wish there was something I could do to stop it.
I'd like to hear from anyone that has had experiences with early on-set Parkinson's. How it has progressed?
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leedlelee
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From what I experience and what I have heard from other PWP, there is no rhyme or reason to the disease. People have such variance in how the disease expresses itself, as well as how it progresses. You don't say how your Mom is going about taking care of herself. Exercise is very important as well as diet. Personally I have tried a lot of supplements, but have settled on only two, glyNAC (NAC + glycine), and melatonin (currently at 60 mg, which btw is supposed to be good for RBD, but does not effect mine at all) in addition to the vitamins I have been taking for many years
Hello. It is nice that you are watching out for your mother. I was officially diagnosed when I was 50, but had symptoms earlier. Two areas you may want to follow up on are what medications she is on and her activity level. PD has progressed slowly for me. I am 66 now. I believe daily walks have been great for me. As far as meds go, people with lower body weights have to carefully monitor their meds. Menopause is another variable. Pace yourself and try to visit when you are relaxed. Fear and anxiety make everything worse. Good luck and ask lots of questions. Try to tackle one topic at a time. This is a great resource.
Hi CKing Ps,Looks like we have some things in common, I was diagnosed at 50 yo and now am 64.
I did LOT OF EXERCISES AT THE GYM, DAILY, ate proper food AND TRIED TO POSTPONE TAKING MEDICATION AS LONG AS i possibly could, I first took just Azilect and then 8 years into the disease ( which was a bit too late) started taking Madopar, I agree there are a lot of variables an the projected progression of the PD, I am lucky, I guess, being a woman with an early onset of the PDm started with tremor, These are ll mitigating factors. I havent done everything I could to fight the PD but I am pretty happy with my slow progress of it.
Soon will be 15 years since the PD diagnosis completely changed my life.
PD is progressing, but quite slowly and it could have been much worse.
Funny discovery: Ive lost a tooth and about to lose another one because the dyskinesia in my mouth, Can never get too relaxed with PD,
I have only 50 kg but never connected side effects of medication with weight, Thanks for the thounght!!
Now, 16 years into this adventure, what have you found most annoying and most rewarding with your PD?
My menopause finished by 45. thyroid was underfunctioning, even before that, so, I think, the underfunctioning of dopamine production was the nest logical thing my body shut down,
I always in search of positive examples and you are one of those rare people!
Thank you. We have even more in common. I just lost my second tooth. I thought my tremor would be an advantage to flossing and brushing, but maybe not so much. I have added a Waterpik to my regime. Let’s stay curious and hopeful.
The “what is most rewarding and most annoying” question is interesting. The most annoying thing is when I have things I want to do and meds are off. I try to use the downtime to prioritize and plan. The most rewarding thing is the feeling that is unleashed when I realize I’ve successfully navigated an obstacle. An example would be harnessing my panic and fear. I keep a journal of my fight panic recipes, what works, what doesn’t. I actually look forward to going to the dentist now. That’s where I test my strategies.
My first symptoms appeared at the age of 29, but I was only diagnosed at the age of 58. In my opinion, that was because I had been going to the gym, every day for one hour. My list of symptoms by then was substantial. Then I immediately increased the guym to 90 minutes every day, but my symptoms got worse much quicker. Sooo, then I stopped the gym and started doing fast walking and within 4 months I noticed an improvement and after 4 years, my movement symptoms had all but disappeared.
You may immediately think that your mum would never be able to do fast walking because she is falling a lot.
Parkinson's Disease affects the area of the brain which controls most of our movements, which we do without thinking, like walking. You don't think what your legs and arms are doing. I have learned to consciously control my walking, without falling, and bringing food to my mouth without spilling it. I have lived without any Pd medication since 2002 and am now nearly 88 and living a good life!
Contact me and I will help you, at no cost to yourself.
Hi. I am new to this, having been diagnosed this past July with Parkinson’s at age 68. What exactly does “ fast walking “ mean. How brisk, how long, etc?
Hi, I have recently joined this group. I have PD since last 10 plus years, it was diagnosed at the age of 50. So far in addition to medicines what has helped me is exercise and walking. Couple of symptoms that are of concern to me 1) Shaking of right leg when I am anxious 2) Shaking of right leg while eating which sometimes results in food spillage. To avoid this I tend to bend forward while eating which again is not good.
Any ideas out there to help manage above symptoms.
Hi. You say that you do walking. I don't want to sound like a know-it-all but if you don't walk as fast as you possibly can for a maximum of one hour, every second day, you will not get much important benefit form it. If you are not prepared to do the walking then I can't help you.I am attaching the Mayo Clinic Study which tells you what happens when we do the above. The body produces two Growth Factors that affect the brain The GDNF Repairs the damaged brain cells that affect Pd and your symptoms improve. When you have read this report and you want to understand more about it then please contact me and I will answer all your questions and help you reverse many of your symptoms, as I have. I have not needed to take any Pd medication since 2002. I am nearly 88 and still live an active life.
Hi. I thought I have made it very clear that you must only walk every second day, because your muscles need time to recover. You will get the best resukts from doing as I say. Good luck!John
"Mayo Clinic Study tells you what happens when we do the above. The body produces two Growth Factors that affect the brain The GDNF Repairs the damaged brain cells that affect Pd and your symptoms improve"
Could you please point to the study mentioning this in relation to PD? I went to the Mayo Clinic site and a search didnt reveal it?
In the medical literature, it is said that each patient has his own PD and therefore, no patient resembles the other either from the symptomatic or evolutionary point of view.
Personally, I have an atypical Parkinsonian synd which is distinguished in particular by the installation of episodic extreme fatigue dating back 22 years, which occurred following a residential and professional move from one city to another.
This fatigue evolved in successive crises of a few months and, from 218, it became permanent and was enriched by the appearance of a tremor with proximal myoclonus, attitude and action, to which was added a slight tremor at rest; About this tremor, I must mention that in reality it started in 2012 intermittently triggered by hypoglycemia attacks following prolonged walking activity and disappearing on resuscitation and it is only later, in 2017 , that it has become permanent or nearly so; now it tends to regress as soon as I manage to engage in my professional activities, which invariably include samples of blood for analysis purposes, without major problems.
The muscle radiation is only felt in 2021, the occasion of my first neurology consultation and following which I was put on Sinement with a diagnosis of parkinsonian synd.
The autonaumes disorders are the last to appear, 6 months ago: dysphagia from time to time, orthostatic hypotension, blurred visuals, episodic constipation all on an anxiodepressive ground and chronic consumption of alcoholic beverages with anxiolytic aim, moderate but regular for 40 years; note that before I became sober (early 2020) all my troubles were resolved from the first sip of Wine!!
My husband is 87. We've been treating him for about 2 years with high dose thiamine a la Dr Costantini. I looked at his website which has info.
Also, Daphne has written a book on it. And there is a facebook group. We quit facebook last year so are not part of that group.
My husband walks as fast as he can most mornings but only for about 40 minutes.
Oh, I just noticed you are only interested in early onset and my husband has only had symptoms since he was about 75. Still thiamine and walking are good therapies at any age I would think!
The neurologist who diagnosed me with Parkinson’s said exercise is vital for slowing progression. She recommended a program called Rock Steady Boxing that is designed specifically for Parkinson’s patients. I used this program twice a week and felt it really benefited me, both for exercise and social connections with other Parkinson’s patients.
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