Early 20’s symptoms of PD

Hi everyone, this is my first post on this forum. My name is Brandon, and I’m 23 years old. I would like to share my story with you all, and hopefully get some advice/ thoughts.

I think my story begins with essential tremor. I was only 15 years old in school when I started shaking in my finger. I think I didn’t think much of it at the time, but it was significant enough for me to remember somehow.

I think around age 17, my (action tremor) shaking started to take hold when I tried to take selfies of myself on the stairs. I had to take around 50 pictures (yes, 50!) because I kept shaking and couldn’t get the angles and lighting lined up. It used to wear me out, upset me, drive me crazy, and end up in headaches and dizziness due to trying to take a photo for so long.

Suffice it to say, I don’t really enjoy taking photos of myself much recently, as I’ve gotten older it’s only gotten worse.

Anyway, I’ll try and get back to the story now. At age 20, I felt that the (action tremor) shaking and now balance issues I had acquired were serious enough to warrant a doctor visit. I was diagnosed in the same visit and asked about family history. I told my GP my grandmother had PD. My doctor said I will never get PD within about 5 seconds! I was mortified.

I will say in a way I’m glad she said I would never get PD, because I tried to go on living my life forgetting about my minor-ish at the time symptoms and just try to be young. Conversely, I felt unheard, unseen, and thought I’d never get believed if this would turn out to be anything else in the future as well.

Fast forward to 22 years old, I experienced my first Parkinson’s disease symptom. I can’t remember exactly which symptom was my very first one, but I think it’s an interesting one. I had foul-smelling breath. Now I always clean my teeth twice a day, and couldn’t understand why my breath was smelling. I think at the start, I watched some ted x talks on YouTube about foul breath and I listened to the nurse from Scotland who could smell PD. As a test, I licked my arm and then smelt it and it was a very awful fishy kind of odour. I don’t know if anyone else has experienced this, but I’d be very grateful if anyone knows anything. I just remembered I also had constipation at the start as well.

Fast forward two months I think, this is where things start to get strange for me. I start to get loads of these PD symptoms out of nowhere, it’s like everything crashing into me all at once - masked face, stooping slightly, quiet voice, trouble with voice projection, voice sounding inaudible and some more I can’t remember.

So I thought, ok, this is all still quite minor. I thought at this point I may have PD, but felt there was no point getting a diagnosis because I heard all about there being no cure and didn’t think it would be much help for me, and then getting labels at work and society that I have a debilitating disease frightened me.

Moving onto slightly more recent times now. I think this is about 4-5 months ago if I’m remembering correctly, I was still only 22 here. I experienced freezing of gait for the first time. I was walking up a very steep hill and I got stuck towards the top, but I didn’t stop completely at first. I was walking normally, and then slowly over multiple steps I started slowing down until a complete pause on my body. I could move my upper body, but nothing in my lower body, I was completely frozen. I was very upset and scared, I was stuck outside of someone’s house and was hoping someone would come outside and save me, but nothing. There were people walking nearby, but they didn’t seem to think anything was wrong (I was just standing still in their eyes…).

After about two minutes, I pulled myself together and tried to force myself to move again. I wobbled a lot and nearly fell over a few times onto grass, but managed to pick up my feet. I kept freezing for the rest of the way home and tried to run but I think the run slowed into a slow jog.

Now, I will get to present time. I’m now 23. So why am I now worried about a diagnosis? Well, my grandmother had PD in her 20’s. My mother isn’t sure exactly what age it started for her, but I’m imagining its probably early 20’s as well. I’m also aware that essential tremor carries a higher risk to getting PD, and most importantly, my symptoms have gotten seriously worse nowadays.

I now have a more serious stooping/ hunched back. When I’m walking, I feel like I’m looking at the floor sometimes. When I was on the bus today, I just stared at a spot on the wall for half of the ride, I felt like I had my mask face on. I don’t know if other people can feel when they have a mask face going on, but because it’s still quite raw for me, I’m conscious how I look to other people. I had an angry face on last week at an old lady who I was letting go in front of me to get off the bus, but I was angry before I smiled. It was upsetting for me, as I don’t want her to think I’m some evil cruel person. :cry:

I won’t go into every symptom I’ve experienced as this post is already getting really long (I’m really sorry). But I really need to add in that I have experienced rem sleep behaviour disorder, fragmented sleep, and falling backwards.

I had a cry yesterday. :cry: I was brushing my teeth and fell backwards 6 times into the shower door! If it wasn’t for the door, I’m sure I would have hit the floor. My knees kept feeling weak and wobbly like jelly, and often when I stand upright, my knees give in and I sink down to a crouch (I’d really like help on this symptom, I don’t understand what’s going on here, I feel like I can’t even stay standing up anymore sometimes).

I sat myself on the floor to brush my teeth as the stress was getting to me too much. When I was done, I tried to stand up - nope my legs have turned frozen. I felt like I was paralysed in my legs. Cried for my mother a few times but there was loud music downstairs, and I left my phone in my room so I couldn’t contact anyone. I felt so helpless in that moment, and felt so bad for all the older people that fall and can’t get up (and everyone else who is younger who has the same problems).

Eventually, I managed to force myself up, but that was very scary for me. I have seen a physio at my doctors surgery and he said I had “movement patterns” but didn’t say anything else, and told me to self refer to the physio department which I have done. I am currently under an NHS physio at my hospital, but he’s not been very helpful and he’s upset me.‘I went in there with back complaints like painful back and posture, but he treated me for the balance side of my problems (which are of course helpful as well), but the exercises aren’t helping me for longer than a short amount of time, because I’ve always had balance issues since I was about 18 with the ET. I’m worried it could be compounded if I have PD as well, as I nearly fell off my chair at the optician’s on the weekend and everyone probably thought I was drunk.

What should I do? Should I make a GP appointment and try and get diagnosed? I have a diary and thankfully I’ve noted down every PD symptom I’ve ever experienced (that’s why my recall is good with time frames on my onset of symptoms), or should I ask to see a neurologist as some people have said on different forum posts, if the GP hasn’t been helpful? Any advice or thoughts would be really appreciated, thank you all so much for reading this really long and tiring post!! I do also worry about Parkinson’s dementia too, as my nana had this and was confined to a wheelchair before her final days.

Kindest regards,


Hi and welcome to our forum, @brands. Yours is a detailed and interesting report of how you’ve seen your symptoms progress. Everyone here is very supportive and I’m sure they will want to talk to you very soon.

I’m very sorry that you’re facing these issues at very young age and that your symptoms have become more and more pronounced and challenging over the years. This can’t be easy for you but you’ve come to the right place to talk about this.

First, it’s extremely important to know that the only person who can diagnose Parkinson’s is a specialist and you can certainly start with your GP and go from there. People with essential tremor have an increased risk of developing Parkinson’s, but not all do and there are some distinct differences that your healthcare team can explain to you or you can investigate online, if you haven’t already done so. We do have an older thread on this forum that could be useful: Parkinson's or Essential Tremor diagnosis. There’s some good advice there on second opinions too. I’d strongly encourage you to book a GP appointment as soon as you can to get your questions answered. Whether or not you have Parkinson’s, there’s definitely good reason to find out what’s going on and how this can be treated.

There’s a great section about diagnosis on our website: Do I have Parkinson's?. Read through the different subsections and you’ll learn more about how Parkinson’s is diagnosed.

Finally, our helpline advisers are there to talk to you about your concerns and support you while you wait for some answers, Ring them on 0808 800 0303.

I do hope that you let us know how things go with the doctor, Brandon.
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Hi Janice,

Thank you so much for your support. It means a lot to me that there is someone out there who cares. :cry:

I have quite a good relationship with my doctor so I will definitely try to make a visit with her. I hope she will be happy to see and help me.

I am thinking about making an appointment to see her but not sure what to say to the receptionist as you have to speak to them first if you want to speak to a doctor. I am nervous but I think I will get through it.

I just don’t know if I should let my physio sessions take it’s natural course before calling the doctor’s surgery, in case they try and tell me to get that finished first, then I feel like I’m wasting their time. :cry:

I will definitely update you on what happens, I’m guessing that there’s going to be lots of healthcare professionals involved in a diagnosis journey but as long as I know it now, then at least I can mentally prepare for a very long road ahead of me. I imagine I will probably have to jump through lots of hoops being so young as I am, almost feeling like I have to prove something is wrong with me.

This is what put me off originally; the fear of not being believed or the insurmountable amount of time a diagnosis can take. I think my nana put up with PD symptoms for about 10 years before she decided to see the doctor. She kept a diary, and that’s the only reason why I am also keeping a diary, she was so clever and I miss her so much. :cry:

Thank you for offering lots of information resources to me and the helpline number, I think I will definitely give that a read before I go to sleep tonight.

I slept at about midnight last night because I was so worried about what’s going on lately, so I wrote that original post which took me ages to finish!

Kind regards,

Brandon :innocent:

Hey buddy sorry to hear your story. I’m at the beginning of this journey too although 48.
Make sure you have family and friends around you for support and encouragement. This forum has also been a comfort for me.
Had a DAT scan today to see if I have PD or not as neurologist isn’t convinced, however I have started responding to meditation for PD.
Anyway keep talking with those who know you and are supportive.
Take care.

Also possibly see your GP and ask them what THEY think rather than you saying you think you have parkinsons. The journey may take time, but you need the correct diagnosis and then subsequent treatments.

Hi Clayton,

Thank you for your help. I would say unfortunately I feel quite isolated in terms of my support network - I don’t have any friends. I have one acquaintance who is an old work colleague, and my mother doesn’t like talking about PD because it affects her as she had to live through my nana’s battle with PD since my mum was a child which was an almost lifelong disease for my maternal nana (from her 20’s until death which I think was late 70’s, probably 79).

My paternal grandfather is a despicable person, he said my nana is a “hypochondriac” and effectively dismissed her PD back in the 90’s I believe. I don’t feel like I can talk to my father either. My older brother has estranged himself, and my little brother is still in college and it wouldn’t be fair to offload on him.

My paternal grandmother is unpleasant, and my maternal grandfather died due to asbestosis and cancer of the lungs.

I don’t feel like I have anyone I can talk to frankly. My mother is slightly more open recently due to me having more serious symptoms lately, but I can see how much it’s affecting her when I try to open up a PD dialogue.

What makes you say I should ask my GP what she thinks rather than me say first that I think it’s Parkinson’s? She has said once before that I won’t get PD in a dismissive manner. I am open to your suggestion though, so I am happy to hear what you think.

Kind regards,


Sorry to hear you’re struggling with chatting to family. Lots of help on here buddy.
With regards to the GP my experience has been that i said that I thought i have parkinsons and the medical team seems to be doing everything they can to disprove me. Might just be my experience and so check with others…
I have had quite poor care and communication to date and so may be bias.
You need to do something though with those symptoms. :grinning:

Hi Clayton,

I’m so sorry to hear about your experience, that is really saddening and I think I will take your advice because I don’t think I will get believed either. I will act like I don’t know what it is and just reel off my symptoms when I make a GP appointment and see how that goes.

Thank you for your help mate!

Take care of yourself,


Hey Brandon. I was just diagnosed with YOP (young onset) and I’m in my 20s. The formal diagnosis was given after the datscan.
I personally agree with Clay about your GP.
What you’re describing could definitely be PD. It could also be any number of neurological ‘stuff’. I don’t like the word disease so stuff will do.
If you tell your GP your symptoms and ask for their advice they’re more likely to advise and can refer you to a neurologist. I waited a year for the urgent referral so the sooner you go the quicker you can be seen.

I’m glad you’ve started physio. Phtsio can be really helpful although it can take time to see change.

Sending love.

Hi E,

Thank you so much for your response. I am now feeling empowered and hopeful thanks to everyone who’s helped me on this forum! :blush:

I think I will make the appointment as soon as I can if I have to wait a year for the urgent referral (if they let me have it) anyway, at least it will get the ball rolling. I hope my GP will let me see a neurologist.

Kind regards :grin:

It depends where you are how long the waiting time is. I’ve a friend who waited 3 years.
Good luck!!!

Hi Brands,
I was diagnosed in2012 @31YO, I had symptoms as far back as 2006 (poor sense of smell, constipation and depression since 2009. )
I think you should see a neurologist, If Its possible, see privately if the waiting time is too long. A good neurologist should be able to diagnose it easily if it is Parkinson’s.

A diagnosis of Parkinson’s is hard at any stage of life, but what makes it more difficult
to deal with it is depression which is one of the symptoms. Generally, patients with young onset Parkinson’s respond well to treatment.

There is no cure for Parkinson’s, but luckily, with the different therapies, it’s possible to manage Parkinson’s and live a near-normal life, There are some activities that you will have to compromise, as illness progresses but it is not a death sentence.


Thank you so much for sharing your story with me.

I will admit I am very scared because I don’t want this to be true, but I know I have to face it if something is wrong with me. I am so scared, I have felt so alone for so long before I even found this forum.

Thank you for your advice, I think I will ask to see a neurologist but I am not sure on the way to go about it. Do I just ask my doctor during a visit? I don’t want my doctor to feel snubbed that I’ve asked for someone else to help me instead.

I appreciate everyone’s help so much, I know I can get through this. I hope you all are doing okay too.

Sending my best wishes,

brands :blush:

Small update: my auntie confirmed my nana had symptoms in her 40’s, not her 20’s, but I’ve been advised to see my GP just to be safe.

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Hi Brans,
The way it works in Ireland is, that your GP refers you to a specialist (Neurologist), its a choice if you want to see a private or public, private is always quicker.

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