Hi there, my name is Julie, I’m 52 and was diagnosed with Parkinsons today. I was previously diagnosed with FND in 2018 but due to increase in symptoms attributable to Parkinsons I visited my GP who advised a neurology referral. Due to the waiting times for NHS I booked a private appointment with my neurologist from 2018.
He did various checks and said that he (and another neurologist) had got it wrong in 2018 and the diagnosis was Parkinsons. He advised I did not require a scan and he is starting me on sinemet straight away.
It is a shock to get the diagnosis but a relief to be able to start treatment that will hopefully manage my symptoms.
These forums are a great find and seem so supportive
Welcome @J! Yes, you’ll find the forums very supportive, as you’ll no doubt find out when other members see your post. I’m sorry to hear about your diagnosis, but we’re here for you.
I’d encourage you to read our website, particularly the pages for people with a new diagnosis. You’ll find a wealth of information there and throughout the site.
If you find you have concerns, do call our Helpline at 0808 800 0303. Our local advisers are there to offer advice and support.
I’m looking forward to seeing more from you,
Forum Moderation Team
Hi @J, Julie, welcome to the good ship Parky !! You are unique in as much that everyone on here has different forms of the disease. Once you’re over the initial shock of the diagnosis the important thing to remember is to not change anything in your daily routine because of it. You will know in yourself when you are unable to do something, hopefully you’re a long way off this stage. Go about your daily life as before, the thing I tell people is that you have Parky, it doesn’t have you !! Be positive in your thoughts and attitude and you will be just fine. There are plenty of good, helpful people on the Forum so if there’s anything you want to ask anytime just do it, someone will give you an answer even if the Moderators have to step in to help(they are very good on here). Take care and stay safe.
@J, One thing I didn’t mention is to have the ability to laugh at yourself and make light of your plight and don’t keep it from your nearest and dearest. Tell people that you have Parkinsons, you will soon find out who your true friends are and if someone sees you struggling with a task don’t refuse their help, you may be able to return the favor another time. It isn’t what you wanted in life but we all make our own paths and you will find yours and your coping mechanisms. Take care.
@cruisecontroller thanks so much- in my family humour is our chief coping mechanism All my “main people” have been told and are absolutely brilliant so that’s been fabulous
Hi Julie, I know this is not the best news you would have wanted, but I think you have started out very wisely by being open with friends and family about your diagnosis. This will make things much easier and you will receive support from them. I was diagnosed almost 8 years ago. Since then my meds have had to be increased gradually, but on the whole, I manage to lead a pretty full and normal life, granted with the support and love of my husband, family and friends. I am now 71 and my philosophy is to take one day at a time, thank God for all the positive things I enjoy and not think about what might happen in the future. I wish you all the best In the days that lie ahead.
@Musical66 thanks so much
Welcome to the forum,here you will find an awful lot of positive people who are only to happy to help and advise.
Personally I am 82 and really there is not a lot that can’t do that I have always done, some with difficulty and all much more slowly, you will find that family and friends will be most helpful, I had a perfect example of this I was out birdwatching with a friend I set my tripod and telescope up and then stopped I did not know what to do next my friend had to tell me how to focus the scope , bearing in mind I had been doing this for years it brought home to that sometimes I would need help,don’t be afraid to ask, one of the the I don;t want to get is the PD mask and so I do facial exercises, and doing them while looking in a mirror is hilarious, this lightens my mood for the rest of the day.
Dear Jay I’m sorry to hear of your diagnosis but if there’s any time to get Parkinson’s it’s now Due to all the research and fantastic breakthroughs that are coming I am five years in diagnosed three years ago but symptoms Since 40 years of age. My parents have it
I manage my symptoms with diet low dose meds and a lot of exercise which fortunately I love please check out Jimmy choi Ninja Warrior as my neurologist said to me when diagnose the prognosis is good and it’s possible to have a long full healthy and active life with Parkinson‘s thank to great advances in medication and surgery
really hope you’re doing okay and the initial shock you settle in as you do your research and findFind out more more positive stuff about Parkinson’s I personally find Terry walls protocol fantastic feel free to PM me Best wishes gaff
Hi Julie, my name is Dave, I’m 72 and live on my own in Geordie land. I was diagnosed 2 weeks ago and still struggling with “information overload” from all the helpful websites . I haven’t had a scan but the consultant reckons I’ve had PD for years while everyone thought it was only a tremor!
I’m blind in one eye due to Glaucoma but still manage all household chores and gardening albeit a lot slower these days.
The forums are well worth reading and you can get some good ideas from different folks.
Best wishes for the future… Dave
We just noticed it was your first post and we wanted to say hi and welcome! It seems like you’ve already had a look around, and that’s wonderful. Please be aware of our helpline as well, at 0808 800 0303. Perhaps at times you might want to chat with a live, caring, knowledgeable person as a way to cut through that “information overload”. Please feel welcome to do.
See you around the forum!
So lovely to hear all of your stories, I am a clinical neurology student currently studying for my masters and I created a short animation video that I am hoping my help even just a small number of people understand their diagnosis a bit more. It focuses on the non-motor manifestations of PD that can sometimes be overlooked… I have a lot of personal experience with PD and my goal is to make a positive impact in the lives of those with PD, and their families too. I will attach a link to the animation and hopefully, it will positively help one or two people. I also plan on making more animations in the future if they are deemed helpful to others so any feedback or suggestions is much appreciated!
Non Motor Manifestations of PD
I hope you find anything you need on this forum information from people who understand or even just a chat if your having a long night and of course the helpline to point you in the right direction.
And if you are feeling creative or simply want to vent some steam there’s always the poetry thread.
I have been on a similar journey to yourself albeit with a little nuance.
Diagnosed with parkinson’s in 2016 and changed to F. N. D. And like you waiting for the next appointment went private and hey presto it’s parkinson’s again.
Parkinson’s is like that for a number of people however if you are thinking that you may have missed out on a couple of years medication, please don’t because you got to that point in one piece and you more than likely have extended the time you can stay on lower doses which is a good thing to have in the bank.
You could even listen to radio parkies. Com and read out or have someone read for any creative writing and every lunchtime there is a chat room on the show which can be a bit of fun to help you through the day.
Anyhoo that’s enough to to take in for now.
I wish you well on your journey
Through old Mr parky’s forest (and there’s the title of your first story for free)
I’m 52 and was diagnosed about 18 years ago and still going on, don’t be sad there is life after diagnoses. Just carry on as best you can, keep smiling, be positive and don’t let the thought of PD get you down.