I’m 31, diagnosis confirmed yesterday with DaTscan. Anyone else diagnosed this young? I have very minor symptoms; slight tremor that comes and goes in my left arm and hand, rigidity in my left arm and occasional bicep spasms. My symptoms in no way effect my day to day life right now and I can do anything I want.
Interestingly, my symptoms are similar to most everyone in my mother’s family but no one else has ever been diagnosed. Anyone ever heard of anything like this? Are there patients who never experience serious progression? I’m (perhaps naively) calm about this but my mother has completely come undone. Any other thoughts about what I should talk to my doctor about when I return this week?
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Bif1986
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I also have it mild but why do you say not to take sinemet? I was put on a low dose straight away and my tremor has almost gone and I now swing my arm when I walk
My advice is to look at the use of thiamine (Vitamin b1) and Dr Costantini , looking on this site and read well everything by asking others in particular on any subject, will answer many. Gio
Only a few people on here are young onset. I am 43, which is still old compared to you.
Danfitz is right about trying to stay off meds, especially levodopa for as long as you can, since you have young onset. The occurrence of side effects is higher for young people taking levodopa. (Look up video by Dr. Fahn). So, this would be something to discuss with your doctor. People have good success with slowing down progression with exercise. On this site, you will also hear a lot of excitement over thiamine.
You could ask your doctor if he/she has specific experience with young onset. My reading indicates the progression is typically much much slower for young onset. It is great to keep a good attitude, too. I will see if I can find these papers, and you can show your mom. People who are young can take 15-25 years even to get to “Stage 2” and that’s without the new info about thiamine and exercise.
I'm sorry to hear about your diagnosis. When I was diagnosed I asked the same questions (I was 48), but as you learn more about the disease you will quickly find out that PD patients are like snowflakes in that no two people are the same. With some lifestyle changes and close attention to diet and exercise it is possible that you can delay the progression for many years. Best of luck to you.
Hi Bif. My symptoms started in 1963, at the age of 29. It took another 29 years of more and more symptoms appearing until I was finally diagnosed in 1992. Since then, with the help of exercise, the right type of medication, stress management and learning to use my conscious brain to control my movements, I have been able to reverse many of my movement symptoms I have managed to stop taking any Pd medication in 2002 and have been medication-free since then. At the age of 83 I now live a normal life again.
Look at my website - reverseparkinsons.net and contact me for a lot of helpful information that will cost you nothing.
It all depends on your attitude. If you have a positive attitude and you want to find solutions then try these:
1. Clench your fist and keep it clenched. You will see that the tremor stops.
2. Splay your fingers out to their furthest stretch. You will see that the tremor stops.
The moment you change a resting tremor to a conscious movement, which clenching and splaying are, the tremor disappears.
I am not suggesting that you continually clench your fist or splay the fingers, but for a temporary situation it may serve a purpose,
I suggest to patients that if they are sitting down and in conversation with others, whom you don't want to notice the tremor, then place your splayed hand on your thigh and keep it still by putting a little pressure on the hand to hold it still.
I always advise people to tell everybody they have Pd and tell them what Pd is and how it manifests itself. People are very understanding and prefer to be kept in the loop. Nobody looks down on us if they understand what is happening to us.
Hi Bif. I'm 31 and I've been diagnosed EOPD a year ago. I don't have any tremors but only when I yawn. The major symptom is the slowness of movement on my left side. My arm doesn't response to my neurological orders automatically. I have to think before using it.
Almost everybody in my father's family has tremors but no one has been diagnosed with PD.
Hi, I was 38 when I was diagnosed but was told I was more than likely to have had it 3/4 years before. I would say you need to get over the shock first before you start planning ir doing anything. I went to my g.p with restless leg who referred me to a neurologist. Then I had stiff neck and shoulders. Then I had a tremor in my little finger which then progressed to my whole hand. It was then my Dr gave me a dat scan and got my diagnosis. I'm now 6 years down the line. My mum and dad went to pieces. What I would say to you for now just let it sink in for you and your family. Once you have your head around it then start to think of other things which I know is hard. It's a huge thing to take on but it's not the end of the world as you first think 😊
I was diagnosed at 45, two years into it. I went on neupro patch for a year but then weaned myself from it when I realized I just wasn't getting better, and that is my goal. My mother has an essential tremor and many family members have a tremor but nobody else diagnosed with Parkinson's. I've just started a rather radical diet that I got from the book plant paradox. I feel pretty strongly that correct Diet can help, and of course exercise is important. Best wishes! Keep the great attitude and stay positive. Many people are battling this issue. And there is support available. I am also taking 2 g B1 a day and Azilect .
Early onset PD is more likely to be familial. It is important to have a good neurologist who specialises in movement disorders. If you are in the UK and near or in London, I would suggest seeking the services of the National Hospital for Neurology and Neurosurgery in Queens Square. I have had great treatment there. Both my Father and his Sister had PD and all of us diagnosed in our mid 50s
The youngest we knew of until recently was dx aged eight, he's now 50, living in the UK, married, working and is one of the most positive people I know. A couple of years ago his 'youngest ever' crown was 'won' by a 2 y/o in the States - yeah, I know.
Spotlight YOPD (.org) is a small UK charity representing Young Onset, which has separate rare disease status and different symptoms.
Check out the site - and happy to have a chat if needed./wanted.
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