Learning about my diagnosis


#1

I was diagnosed in february, and apart from do what the consultant said I havent learnt much more about the disorder. At little bit because I’m a touch scared of all the horror stories and I want to stay positive for my family. I will be frequenting this site to gain knowledge from people who have experienced more than I. I am 45 so ‘Young’. Have a tremor, which is noticeable under stress. Some muscle aches. My symptoms arent bad at present but I am trying to learn what the parkinsons effects are,
I hope to gain valuable info with what to do and not to do to remain as healthy as possibe for as long as I can.
Thanks


#2

Hi LWYMI,

Sorry to hear about your diagnosis. You must have lots of queries and concerns at this time, so we’d suggest you take a look at our website where you can find plenty of information, support and advice: https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons

You might also like to give our Helpline a call if you’d prefer to speak to somebody in person. You can reach them on 0808 800 0303.

I hope this helps.

Take care,

Owen,
Moderation team


#3

Hi,

Just read your post and i am in a very similar situation to you, I was diagnosed in July this year and only 46. I have been doing the same things as you, just reading posts and seeing what I can find out for myself. This is my first post and it’s to respond to yours, just wanted to say I understand where your mind is and try to stay positive as it’s the best approach.


#4

Hi LWYMI

You have come to the right place. Here you will find messages from people with a similar experience. Having said that, every individual reacts differently so generalisation doesn’t work. nonetheless you can always find something interesting to read. I would just say two things - stay positive and exercise - theswe seem to be the best ways to keep PD at bay. I was diagnosed in January this year, but am much older than you (83) and can understand your worries.

Good luck

Knine

Audrey


#5

Thanks for your reply I will have a read up to find out what questions I need to ask.


#6

Thanks for your reply. The more I read into this I begin to grasp how many people it affects, and of such a range of ages. Its really nice to hear from people in similar situations especially when you dont really know what to read and what not to read. I think like you say positivity is by far the best approach. We have it so lets get on with it as best possible. Let me know how your getting on and thanks again for your post.
LWYMI


#7

Thankyou for your reply and your positive outlook. I dont imagine it makes any difference what age you get diagnosed, its still a major blow which you need to get your head around. I feel the more I understand Parkinsons the more equipped I’ll be to be positive about fighting it. Thanks again and good luck
LWYMI


#8

Hi LWYMI

You seem to have the right approach to PD. Parkinsons UK organises Self Management courses, both online and “in the flesh” as it were. I did an online course and found it very useful and interesting. Before that I had never met another person with PD, not ot my knowledge anyway.
Well worth considering.

Best wishes
Audrey


#9

Thanks I’m sure it will take a while but with kind people helping each other it does seem better.
LWYMI


#10

Hello LWYMI
My Hubby was diagnosed in February this year at the age of 52.
We really have found it difficult to come to terms with but the things which have helped him are exercise, a great Neuro team and good support and info from this group.
I don’t often comment but reading some of these posts has really helped as has talking to people who are willing to share their knowledge and experience.
If you are able to exercise, I believe it is very beneficial (well, it certainly has been for my Hubby).
He started with Physio and is now exercising with a fantastic Personal Trainer (who specialises in PD) and has made huge improvements over the past 6 months.
I’m sure you’ll find lots of great advice in this forum and find what works for you.


#11

Thank you for your advice. I am making a effort to do more walking and cycling and a gym has been joined but is not as regular as it needs to be yet. I hope your husband keeps up the good work as positive stories always help especially from people you can relate too.
LWYMI


#12

Hello there, I would agree with all that has gone before but would also say give yourself time to adjust and sort out what you want to know. Information is important, it is empowering and a means by which you can regain some control over your life when it can feel like you have none, but make sure you get good information and this is a good place for that. You will hear time and again, but only because it is true, that everyone’s experience of PD is different and there are 100s of horror stories that will frighten you half to death if you let them; so think about you and your situation and ask yourself what you really want to know just now. Parkinson’s UK have some really useful and easy to understand booklets and fact sheets which you might like to look at when you feel ready. I would also suggest that you don’t worry or think too much about the future just now if you can manage it, concentrate on the present, take each day as it comes and see how you go. It is not so overwhelming if you take it a bit at a time and build up your knowledge base at your pace and on the basis of what you want to know. I hope you are finding the forum helpful. Take care.


#13

Thank you for taking the time to reply. I’m not rushing to hear the worst, and I avoid the horror stories. To be honest it’s taken 5 months to decide to look on here. I have some parkinson UK leaflets which were good.
Thanks again
LWYMI


#14

No problem seems to me you are doing ok going at your pace and finding out what you want to know when you want to know is the way to do it then it doesn’t feel so overwhelming and life changing all at once. You will find your way to live with it, some see it as a battle, me personally doesn’t see it like that. I accept it is part of me and as things develop see them as a challenge to find a way to get the best quality of life I can, I keep positive as much as I can and try and keep active. Not always easy, not infallible but its done me well nearly 9 years on. You will find a way that suits you and as long as it works for you doesn’t matter what others think or say - in the early days I got a lot of well intentioned but rubbish advice, from friends now they know to take their lead from me, they still offer advice but now accept it is still mostly rubbish and has become something of a standing joke and we all enjoy it. Believe it or not PD can bring with it humour, mostly black it is true, point is its not all bad unless you let it be. I’m waffling, I will shut up now!!


#15

Hi
You have some great advice above. Thirteen years ago I was diagnosed aged 44. The PD is progressive and I’m about to go for DBS. The one thing to concentrate on is keep active. The rest will be a challenge but you’ll be fit enough to face it.


#16

Thanks again. I do feel at the moment the adjustments I’ve had to make are luckily not really physical . It’s been more a case of accepting the diagnosis!
Which is harder than it seems. But I’ve accepted it and will keep as positive as possible.
LWYMI


#17

People on here seem to be very understanding and helpful. It’s seems apparent were all on an individual but linked journey and it does help to discuss it. Good luck and Thanks
LWYMI


#18

Hi Lwymi, I really only want to say one thing. When you talk about “horror stories” just think about what that means to someone who is very well progressed into Pd. I think this phrase should be banned from this forum. We are talking about people here.


#19

Just because you have been diagnosed with PD doesn’t mean you have to change your life style, you carry on as before to the best of your ability. As others have said, be positive in your thoughts and if you want to do some exercises then look at PDWarrior, it is a website on YouTube and is Australian and gives you different exercises to help with posture. Remember, everyone is different but we are all in this together and if you want to ask anything then ask away there will always be someone on here who can give you an answer even if one of the Moderators has to step in and help which they do from time to time.

Les


#20

I’m in a similar boat having been diagnosed this time last year at the age of 48. It is all rather daunting, and its on my mind all the time, but I do find staying active is the most helpful approach. I am playing golf as well as ever, still playing squash twice a week, and walking the dog every day. After an activity I definitely find symptoms are reduced. Beer seems to help as well !! Onwards and upwards, we have been dealt a tricky hand, but stay positive and let’s all keep battling !