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. 
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. 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,
Brandon
