I want to introduce myself but also i want to vent, scream, cry, be confused, ask lots of questions, gain support and provide support to others if i can.
I have just been diagnosed with young onset parkinsons (i am 31).
Now this would be a shock enough… but they fact it has come after my neuro told me they originally didnt make the correct diagnosis in the first place and now i have to re-learn everything in my news life from my other life where i learnt to live with having MS!! Yes thats right. I have had MS for 3 years except i didnt… i had Parkinsons.
I am now really struggling with the error and my head is a mess. Tbf i didnt ever agree with the MS diagnosis and the Parkinsons diagnosis actualluly makes more sense. My brain is just trying to process it all
Now i have the correct diagnosis i can now actually ask relevent questions.
Please can anyone tell me if they have the following 2 issues?:
I cant walk near people. If i am walking on the street or shopping centre for example and i happen to catch up to the person is front… or someone comes out of a shop etc and is in front of me my brain and legs go into over drive and its like i suddenly forgot how to walk normally. I really need to get in front or im a mess. My legs and brain dont know how to handle it. My neuro said it is normal and similar to freezing in doorways but didnt offer any advice or help. If anyone else suffers this please any help would be amazing.
The second issue i have is memory. My memory has been a bit rubbish for a while whilch i have incorrectly be putting down to ‘ms brain fog’. But it has gotten a lot worse lately. I can remember normal stuff like the date, priminister etc it is annoying instant memory things. Like for example someone will want to know something and will ask me to google it. I will open my laptop… bam… no idea what i was to google… absolutely no idea. Its like a few seconds and its gone. It is like this all day everyday. I know its monday and i know i have a salon appointment but can i remember why the hell i picked the phone up. Can i hell!! Who was i going to phone. Why was i going to phone them? Please tell me this is normal? What i can and cant remember is all over the place and i am scared i am getting alzhimers. Please tell me this is a normal PD thing.
Hi Natalie really can, t believe what you, ve been through I would first suggest you find and make contact with your local pd nurse as you will need their support I, m 9th member of my family with pd and none of us had same issues so I would not read up on pd to much you need to take each day as it comes and cross every bridge as you come to it if I can help please do get back to me
Pete
Hi @peter_corcoran
You Will proberb!y find that even poeple without Parkinson’s have these memory issues. For example at work someone would go to the cupboard and then say ‘Now why did I come I here for’???/ Silly things like that
Hi
Sorry I replied to your post but mistakingly sent it to someone else . I can forget things to too . I would go to cupboard and forget what is I wanted. It happens to people without Parkinson’s so just put it down to Human nature for now. All the best
Hi and thank you for your msg it is nice to hear from others.
Its been rubbish but im just trying to keep going.
I have been referred to a PD nurse just waiting to be seen hopefully that will give me the opportunity to ask all the questions i have.
Both my parents were late babies so their parent were very old already when they were born so i have no elders to provide history so we have no idea how many others in my family have it.
So sorry to hear about your many years of difficulty in reaching a correct diagnosis, This must have been incredibly frustrating for you. It’s not surprising that you have a lot of queries and concerns about your symptoms given the circumstances.
Please do take a quick look at our website, where you’ll find a wide range of information and advice that you might find very helpful: https://www.parkinsons.org.uk.
You can also call our Helpline advisers on 0808 800 0303 from Monday-Friday: 9am-7pm and Saturday: 10am-2pm. They will be very happy to offer you advice and support in this confusing and difficult time.
Hi Natalie
My husband has PD and also has memory problems! Write down any question that jumps into your head as soon as possible. That way you won’t forget the things you want to discuss with PD nurse. Good luck
I can well understand you, I was feeling the same way just after I got my diagnosis i.e. I had some very strong PD symptoms that wouldn‘t correspond to somebody at the very early stage of PD. Many other awkward things were happening in my head and with my body, and I was desperate.
You are obviously in a state of shock, and everybody‘s brain and body manages it differently. Take your time, those symptoms might improve or disappear, like it was in my case - looking back I can‘t immagine this was really happening to me, but it was (having said that, I now have other, different symptoms and issues, but that‘s another topic). Try to find a peer - somebody comparable to you by age and the level of PD and the symptoms you are experiencing and this will for sure do you good for a start (I was lucky to find someone like that, and during this phase I preferred a 1:1 contact rather than exposure to a group). A PD nurse may well be a good first point of contact as well…
Err…um…screen looks as if I was going to post something… cant remem oh! yes! memory thing All I can say is keep a diary and write lists in it. Do not write lists on bits of paper, it makes the place look untidy. About the wrong diagnosis, I was promised by the first neuro I saw that I did not have Parkinsons. Nine months later she sent me for a Datscan. About walking near people, I haven’t had that exact one, but I went through a phase of finding it very difficult to cross the road. I would go to a pedestrian crossing, press the button, feel a need to hold the post while I waited for the lights to change, and then not want to let go of the post when the lights had changed.
I often find when I put my glasses down I can never remember where i have put them.Sometimes even my tablets.not sure whether it is Mr Parkinson’s or Ms Parkinson’s taking or just my own silliness. But I go with it anyway
Hi IamUnique,
PD is one big roller coaster, one we would all rather not be on.
One thing I have learned is that everyone’s experience is different. While I haven’t experienced your problem I have found that my startle reflex is very heightened. Almost any unexpected noise will make me jump a mile, making me think I must look ridiculously nervous, although other people don’t seem too notice.
One good piece of advice I was given very early on is to try not to rush, not always possible I know, but it does give me time to think out the next move - sort of… Daffy
Another one to add to my collection Daffy!
I get startled by the slightest noise.
I also have developed a slight stutter when I talk.
I mostly feel more comfortable on my own or with my 21 month old grandson who doesn’t judge me.
Hi Hubby
I’ve had a stutter for about 8 months but so used to it now
Sometimes I prefer my own company
I’ve always said
" Only those who have never been judged
Have the right to judge "
I’ve never met anyone like that yet
