Hello, im a tad scared. 35 and recently diagnosed.

About me Introductions and personal stories
21

Hello everyone, im so very sorry ive gone quiet, im overwhelmed by the response ive had.
Ive been off work for a bit trying to come to terms with it all and getting counselling, ive gone from being in a hugely dark place to seeing beauty in life again. Ill try reply to everyone.
Thanks for making me feel less alone.

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22

Hi @Parkybadger, Iā€™m in Cornwall, where are you?
Thanks for the reply.

23

PD only wins if you give up. My own experience is that I now appreciate the good times and good people around me. Anyone who ā€˜disappearsā€™ was never a true freind anyway, so the loss is thiers.

Never forget you are still YOU, all your personality is still there, just sometimes takes longer to show it

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24

Iā€™m in Birmingham. Shame that itā€™s so far away.

I found this organisation to be very helpful, especially as they have a focus on young people with PD: http://spotlightyopd.org/

They might be able to link you up with other people with PD in your area.

Good luck!

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25

Iā€™m a bit closer to Drew being in Devon but there are a lot of people from the Birmingham area down here living and there are a lot who come here to holiday as well as Cornwall.

Les

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26

HI @jim_Davies, Iā€™ve just gone back to work after a month off to comes to terms with and get the drugs sorted.
Yes Iā€™ve told work and they are being very accomodating, I guess Iā€™m lucky to have a good HR department.
Iā€™m doing a lot of kayaking, living in Cornwall its not only good for my upper body but beautiful.
thanks for your reply.

I hope you are doing OK with your PD.

Regards
Drew

27

Hi @Shane, Iā€™m very sorry to hear about your diagnoses too, what a turn out for us.
I also suspected it from dec 2017.
Iā€™ve had a month off and had counselling, family time, me time, lots of camping, walking and kayaking. Cornwall is great for that. Iā€™m actually yet to see the parkinsons nurse, but have a great pharmacist who has a particular interest in PD, so I feel looked after.

I wish you the same, keep positive.

Weā€™ll fly a flag for a positive life with PD.

Where are you based?

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28

Hi @JaniceofGREENOCK, thanks for the message.
Sad that some people walk away not knowing how to treat you, they are not worth it.
Iā€™m finally coming to terms with it and staying active.
10 years on, do you feel like youā€™re still living a fulfilled life?

29

Hi @Divine1,

Thank you for the kind words and positivity, Iā€™m finally getting there.
And yes, lots of exercise for me now. Not a bad thing.
I hope youre doing OK with your PD.

30

Hi @Thurinius,

Sorry about your recent diagnoses, sounds like you have a good attitude, took me a while but Iā€™m finally getting there. I have issues typing with my left hand ā€˜sometimesā€™, very dependant on if Ive taken my drugs.
I agree, the big picture can wait.

Hope youre doing OK, where are you based?

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31

Hi @Raz1,

Thanks for this message, Iā€™m really finding this forum a great place to hang out.
I also find that its hard for people to get their head around the disease, its a hard one to explain as well.
Iā€™m doing my best to help people understand it.
Hope youre doing Ok.

32

Hi @Parkybadger, yes it is a shame but if youā€™re ever in this neck of the woods on holiday feel free to give me a shout, Iā€™ll take you kayaking for some exercise.

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33

Hi
I also have recently been diagnosed I have been doing some research on the connection of PD and Tce eg Genklene inhibisol trycoethelene Degreasing solutions.if anyone has had any contact even if itā€™s 40 years please let me know as I am in the process of a legal battle.it proven there a x6 chance of getting PD
Keith

34

Hi Drew7

Well I am glad that you are getting on this forum and that you are finding it useful , I am well not to good I have had a fall a few weeks back and my crown thoot dropped off, so I went to the dentist who told me I had cracked in two so they will have to remove it, so that was done last week Tuesday, but my mouth still is very very sore and still bleeding, the hole where the door was pulled out from keeps getting ever thing food stuck in it, I went back as my ear and face one . So they told me that I need to keep the hole clean. So I asked for a fake tooth but they have said I have to wait 6 months. But I am in so much pain I am going back in the morning . They canā€™t leave me like his

Sorry to go on I hope you are keeping well
Regards raz

35

Hi @trailerman121,

Hope all is well.

Genklene, which is also known as trichloroethylene (TCE). TCE has been banned for many uses but is still sometimes used as a degreasing agent. Research from 2011 suggested that exposure to the chemical solvent TCE may increase risk of Parkinsonā€™s.

The study was the first one to report a possible link between Parkinsonā€™s and TCE, but further larger studies are needed to confirm the relationship.

We still donā€™t know exactly what causes Parkinsonā€™s. But for most people itā€™s likely to be a combination of natural ageing, genetic susceptibility, lifestyle and environmental factors.

So, while TCE may play a small role in Parkinsonā€™s in some people, itā€™s probably just a small part of a much bigger puzzle.

I hope this information helps!

Best wishes,
Reah

36

Hi Reah
Thanks for your msg.
I have been researching into the connection and at least 2 people have been successful with claims regarding tce exposure. 1 chap won a case against the Canadian navy and another I think was in new Zealand again it was successful .
I have been posting msg regarding exposure on other pd sites and getting some feedback.
I will keep you informed on any progress
Regards
Keith

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37

Hi I am 46 now and was diagnosed 15 years ago. Since then I have had 2 children, changed career now retired. Been to Disney Both Florida and Paris. Taken up ping pong (was rubbish before i had PD and am actually better now) I also took up wargaming (grown men playing with plastic soldiers) I make and paint the army i use.

It is not always fun dark places have been visited but I find the best way back into the light is through talking to people.

I have a group of PD friends from the Self Management course (which was awesome) who meet every 2 months or so and poke fun at ourselves and share ideas.

And I have lost friends to as they just could not adjust to the new me but that is my fault too as I did not open up about it to start with.

In a nutshell stay active, share your feelings, laugh at yourself (far better than grumpy or angry) and be a good husband/wife or friend

hope this helps

good luck

38

Morning Fatious2

Wow thatā€™s is so nice to hear that you are able to enjoy life and have a friend circle which know how to be around you, you being active it great and keeping a positive mood, but itā€™s not always the case, but weā€™ll done as by writing this down here , it will show Powellā€™s that you can still live life and enjoy as much as you can .

All the best
Raz

39

Hi I am Jon. Fifty now but diagnosed at 38. I still work fulltime. I would recommend an active lifestyle if possible. Exercise is medicine. Peer support has always helped me as well so if there is a group you can meet up with that maybe good. It has impacted on my life but I have still got much to offer. If you want to chat further I would be happy to do so.

40

Hi there. Yep, my voice gets quiet sometimes but the main problem I have is that my speech speeds up and I can slur my words together - I have to really concentrate on that.
Weirdly, I have found that taking an Omeprazole (a form of antacid from GP) every morning helps with the quality of my voice, I have no idea how this works and maybe particular to me but I notice if I donā€™t take it.
B