29 and recently diagnosed


#1

Hi there,

Just saying hello as I've just recently joined the forum. I'm 29 (f) and was diagnosed with YOPD a few months ago. I'm looking for people to share experiences with; I was discouraged by my neuro from going to local meetings for various reasons (likely difference in age and progression). It's true that I'm very interested in hearing about people with this condition who are closer to my age, as it seems quite uncommon, but I'm looking to draw from others' experiences in general, whatever the age. My main visible symptom is a tremor in one hand, currently somewhat suppressed by the medication I'm taking. I've had quite a lack of patient support this far: my GP has made it clear he's only there to prescribe; I only received a referral to a PD nurse after titration (though I will use this service in due course - I've heard the nurses are excellent); and it's generally been a very rough road, without going into the fine details (would be a very long story!) I'm still smiling, though, and keeping positive. I'm hoping to get involved with some volunteering/fundraising in the very near future. 

Anyway, that's a very brief summary of me.
 
E :)

 

 


#2

It sounds like you have the right attitude. I hope you get a good response from our younger members.


#3

Welcome to the forum.  You will find lots of experienced and friendly people here and we older ones welcome new members of all ages.  Like AngelaR I hope that you get a good response to your post.


#4

I am 42 got parkinsons at 34 ,yes your right theres not a lot of young pd meetings out there,ihave heard theres a good one in bristol, but i live in weymouth ,pd did not alter my life untill about 3yrs ago then it started to affect me bad.yes you nero consultant right its not good for you seeing older people with there conditions it will just make you feel depressed ,while you can ,do everything you want to do and enjoy life to the full.time goes by so quick now. Plenty holidays and going out!smile


#5

Hi E

I was diagnosed last year age 33. Sorry to hear about your diagnosis. It is very difficult to cope with. I am writing a blog (www.dialoguewithdisability.blogspot.co.uk) that you might find helpful. I am happy to answer any questions you might have

Take care

dr jonny


#6

Thanks, all, for your replies.

I'm very lucky to have a great support network at home and at work - I'm getting married next year so also have that to look forward to - I think this is helping me to keep a a good outlook on life right now. As long as I don't think too far forward I'm coping OK :)

I'll have a look at your blog, dr jonny - thanks.

 


#7

Thats good news,and good luck,live life to the full.only worry about it when your haveing a bad day.keep smileing smile


#8

i suppose im a old man now 42 eye roll


#9

Nah! What are your main symptoms, Gus?


#10

Hi E

That's the right attitude! Congratulations on your upcoming wedding!

I find the prognosis, the looming shadow of dependency, the hardest thing to cope with, especially (but certainly not exclusively) with early onset. I felt as if I had aged 50 years when my diagnosed landed in my life. It is important to remember that the future is unwritten. I don't know what will happen in 10, 20, 30 years. This ignorance gives us space to live for today and resist being dragged into the future. We can only really choose what we are doing at this instant. The rest we are blind to.

We may have Parkinson's but we should live the other things too!

take care

dr jonny


#11

ID RATHER NOT SAY IT WILL ONLY DEPRESS YOU,BUT THANKS FOR ASKING,JONNY RIGH. LIVE FOR TODAY NOT TOMORROW!


#12

Hi young-onset-83

i am very old but thought I could comfort you with 2 things.

My husband has had Parkinsons for 13 years and still plays golf, walks to the shops,, only needs a walking stick, enjoys the cinema, theatre, holidays etc. .

And the fast rate of research is going to bring a cure within the next 10 years...I'd bet on it.

i wish you the best of luck for your future.

There is much happiness  stillto come!

Love

GG


#13

Hi young-onset

glad to hear you are trying to stay positive , not quite has young as you but i was diagnosed in August 2013 with Pd at 47 years old

i had my first experience of my local pd support group a few days ago , i specifically looked for a younger persons group  luckily there was was in my area , i must say it was a great help to be able to talk with others who were living with pd  and i must say that most of the people who were at the group were a inspiration there was people there who had had pd for nearly 20 yrs and still led a active life


#14

Thanks everyone for your comments and encouragement. I'll certainly do my best to keep this mindset, though don't get me wrong - every now and then I have a mini melt down about it, then I feel better and get on with things! Dr jonny: you're definitely right that it's the inevitability yet uncertainty of the prognosis that adds salt into the wound of the diagnosis.

In my understanding, it's such a personal condition, affecting everyone so differently (and I've heard and read that it's quite a different condition/prognosis in younger people) so I will just roll with the punches and hope I'm dealt a reasonable hand (as far as reasonable goes!) Golden girl: I hope you're right about a cure; there must be one out there. 

Gus: I wouldn't be depressed by you talking about your symptoms. I don't think there's any point in shielding myself from the inevitable. If anything, I think talking to all kinds of people on here and perhaps at a group would help better my understanding of what may (or may not) be to come for me.

Have a nice evening, all :)


#15

I'm 48 female due to start medication does it work ?? Also I have tremors down my right side . It's the tremors I hate it x


#16

Yes the meds do work,sometimes it may take a little while to get the right doseage & meds ,but yeh they do work. Good luck remember im not a doctor so not 100%


#17

My meds have helped my tremor (left side) considerably and have also made me able to sleep at night, though one of the side effects I'm experiencing is very strange, very vivid dreams. I'll take sleep over strange dreams for now, though :)

I'm titrating up another 4 mg on Requip XL as I still have a lot of stiffness and bradykinesia in my hand. I've seen a difference in the first 2 mg increase and hoping the next 2 mg will be even better and hopefully I can stay stable on that dose for a while.

Work is flat out at the minute, and the stress definitely affects my tremor, but I have a break coming up for Christmas so just focussing on that. Hope you're all ok.

E


#18

Watch the stress ,not a good thing for parkinsons,before you know it your on stronger meds due to stress.Got to make the most of life & without any stress ,have a good xmas.from one of the wise men !cool


#19

Wise words Gus! :)


#20

Hi, I was dx age 30 (F), (I'm now 39). So, as I'm still the right side of 40 message me if you'd like to chat!

N :)