Learning about my diagnosis


#21

Hi, i was diagnoised when i was 43, only had a tremour in my left arm like you which was also noticable under stress. im now 59 and still working 30 hours, i might be one of the lucky ones because pd seems to be different in each individual, yes im on medication stalevo, amantadine, rasagiline,cobeneldopa and rotigotine patches all still low doses. i have not read up too much on pd only if i start with a new sympton. i have had a brilliant pd nurse and consultant, which is helpful. i cope very well and people are shocked when i say i have pd, as i say i must be very lucky, its not the end of the world, you will have bad days i am sure as i do, and i do know eventually i will get worse, but i just live for the day and dont think too far a head. hope all goes ok with you, its difficult but try and stay positive best wishes


#22

Sorry I didn’t mean to upset or offend
LWYMI


#23

Thank you for your positive message.
LWYMI


#24

Thanks. I think you’re right and my aim is to carry on as normal for as long as I can. I enjoy walks, bike rides and other sports so whilst I can I will. Thanks again
LWYMI


#25

Good morning LWYMI. I hope you are feeling good today. Regards my comment. All I meant was someone who is extremely affected by this dreadful disease might sit down to read this forum and think they are the subject of the said phrase.
I am back to waking at 4am today, I have had a few nights of sleeping through to 6am which is very nice. I do not mind in the summer as I think the early hours of the morning are the best of the day, especially if I am out fishing. I think you have got the right outlook on your diagnosis. We all react differently to being told we have Pd. I am in my11th year and still do most things albeit a bit slower. Once you accept your situation you will get on with your life and see it is not the end of the world.


#26

Thanks and stay positive
LWYMI


#27

I can see a lot of people have responded but here’s my tuppence worth ha ha.
I am 52 and was diagnosed Nov last year, I then had radio silence from neurologist etc for 9 months as I was on a waiting list. Now I have an appt with a PD Nurse next week and saw a physio for the first time last week. Given all that I feel I am coping well, I have an amazing personal trainer and did countless research on my own. Parkinson’s UK advisors were amazing help with questions etc. Now I am stiff most days but I exercise 5 times a week . I can’t cycle as my balance it’s good on a bike so would be interested to know how others overcome this as I used to love my bike . I still work full time and my work colleagues are shocked by how well 8 was when I returned to work. I like to think I am a positive advert for the condition which has created many talking points in workplace which I feel raises good awareness . It was funny the physio asked if I had any questions I said well no as I have managed this alone for 9 months after first diagnosis. 8 d9 thin’ the system needs to kick in with PD Nurses when you receive your diagnosis which can be upsetting and puzzzling for families .


#28

I thank you for your comments and you seem to be doing well
I have no answer to your balance issue. Hopefully your nurse will help. I have got a nurses number for advice and are on the waiting list for an appointment but it does seem like a long wait. It’s good to hear similar stories and learn how others cope.
Thanks and keep posting
LWYMI


#29

You certain;y didn’t offend me at all.


#30

Hi I’m Keith I’m 52 years young
Waited almost 8 months before I was seen by a neurologist
In that time my tremors increased along with bad mood swings
My balance did decline where now I walk with a stick
Stairs are now a problem where I get out of breath going up stairs as now it’s 1 step at a time . But coming down stairs is damn well dangerous. I have to hold onto both walls or grip the bannister for dear life
I have had a few falls but thankfully or luckily I haven’t broke my neck
I can no longer shower so only baths as when standing and turning I loose my balance
So now I take 1 day at a time and cross my bridges when I get to them
Take care
Keith


#31

Hi,
Being in similar situation like you and Paul72, I can say that it took me at least a year to realize where I am, what it really happening, what is helping me and what isn‘t, and which physician‘s opinion and advice is the right for me (I was lucky to be able to have access to several of them). So take your time - after a year or so you will be much wiser and stronger than today!
Cheers


#32

Thanks Keith. I’m still listening and learning from people on here, and trying to take it all in.


#33

I think you’re so right. I’m just taking all the advice and comments in and trying to filter out what I think helps and applies to my situation. Thanks again LWYMI


#34

When I was first told I had a problem dealing with in I admit
But soon I started to accept that I couldn’t change it
I know my limitations are on the way but hopefully they come very slowly
Like you I’m still learning . Advice from others help but they are not a one fit suits all solution
I just have to avoid confrontations as I don’t do well with them. ( LONG STORY )
But being able to share my good day and bad days helps
Reading other people’s posts helps me put my brain in gear
Life is now a different journey but now with a few bumps and steep hills to manage
BUT MANAGE I WILL
I don’t see this as the end but just the start of a new chapter
There are ALWAYS alternatives
NEVER SAY NEVER
PD is like Cancer IT DOESNT CARE
I try to be strong and not let this take over
YES I have PD . IT DOESNT HAVE ME
If others see ME FIRST the the PD that’s fine
PARKINSONS will AWLAYS COME LAST
So take care. Let’s make Parkinson’s regret US and not the other way around
Keith


#35

I think you have the right attitude towards this. We have to get on with it and make the best of what we have. I still have lots to learn but feel I am learning and appreciate any advice given.
Thanks LWYMI


#36

can only live with the cards we are dealt
nothing is a one fit suits all solution
we have to deal with it the best we can in our own way and try to retain as much of us as we can


#37

Just to echo what a lot of people have said here. My mum has had Parkinsons for 15 years. In my mum’s case it was possible to live a healthy and active lifestyle for many years before things became more of a challenge. My mum has had so much to cope with but that has happened in very recent times.

My mum had 10-12 very good years. She played golf, swam, got lots of exercise and people often didn’t realise that she had Parkinson’s at all. My advice would be to do all the things you want to do, live in the now and enjoy the moment as much as you can. No one knows what the future holds. Ps) I should also listen to my own advice ; )


#38

Thanks for your comments! I hope by being good and healthy and from taking good advice I will manage to enjoy life for many years to come. Best wishes to your mum!! Thanks again
LWYMI


#39

Hello,the other day I heard something ,someone said very strenuous exercise is beneficial to you if you have Parkinson’s,only hearsay though,bye.


#40

Hi @Wag,

Exercise is definitely good for people with Parkinson’s, however, it doesn’t have to be strenuous for it to be effective.

There isn’t a one-size-fits all approach to exercise, which is why we have a exercise styles on our website for people at different stages of their Parkinson’s journey. You can find all you need to know here - https://www.parkinsons.org.uk/information-and-support/exercise

I hope this answers your question.

Best wishes,
Reah