Diagnosed at 26


#1

Hi, I'm Tracey, I'm 35, I have 2 children 10 and 13 and I was diagnosed with PD when i was 26....it took 10 years to get my diagnosis, I had no idea what was wrong with me, my GP didn't even know, everyone kept telling me to speed things up etc, everything I did, I did very slowly.

To be diagnosed at 26 was a huge shock, but I finally had my answer. I had so many tests for so many years, but after what should have been a 2 night stay in Frenchay back in Oct 2006, I was allowed home after 2 weeks, with my diagnosis and my medication. 

Taking that very first tablet totally changed my life, I was like Speedy Gonzalas, everyone in my family were totally shocked at how 1 little tablet could change the way I perform each day.

I have good days and also bad days..when I have my bad days, I call it 'down time', I now have 'down time' at least once a day which could last anything from 2-4 hours, where my tablet just wont 'kick in', these periods really get me down and I don't like being around anyone, not even my partner. 

For so long I have thought about joining a group, a forum, a site, anything that would link me to other's that also have PD. I have now bitten the bullet and joined this one.


#2

Since joining this site I have read some sad but interesting stories , it's difficult to get my head around the idea that everyone is different.

I'm hoping to get to know and hopefully meet a few New friends. 

X


#3

Hi Tracey

I am so sorry to hear about your diagnosis at such a young age.

Do try to read all the posts  about food timing and drugs as Levadopa can't be absorbed if you eat protein too near taking the pills.

Also a large meal interferes with the absorption.

Try to take the pills halfway between meals and reduce protein...experiment with food to see what the effect is.

Hope this helps reduce the downtime.

Love

GG


#4

Thanks GG, 

I've been experimenting for years or so it seems, it's def a challenge, everyday I think how am I going  be today , do I go out, do I stay in. I find if I go out first thing I'm ok, get it out of the way early it's when I go out in the afternoon that I start to panic.


#5

My husband used to be panicky if he went out, worrying his 2 hourly dose wouldn't kick in.

His Parkinsins nurse suggested dispersible Madopar as a rescue remedy when panicking.......put it in your mouth, take a big swig of water and you're fine in about 10 mins!

It lasts long enough for his Sinemet to kick in.

After a few months of using this, he became confident that he wouldn't get stuck anywhere and the panic attacks got less and finally stopped.

He carries the bottle of pills everywhere and a small bottle of water and just knowing they are there seems to make him feel OK...he rarely has to actually take it now!

Have you tried this?

Good luck!

GG

 


#6

 

hi tracy

I can go along with much you've said about down time, i liken it too a battery, i never know how long it'll last dependent on what i'm doing, each day or part of day is different, i might have duracell(like the drumming gorilla  cool) one day, but the next or later that day, lucky dip brand from poundland lol neutral.


#7

Sea angler, that's exactly the same as me lol

GG, I take the dispersible madopar first thing in the morning to kick start me off  and I take my bottle of tablets everywhere , I've not tried taking the madopar any other time, not even on downtime, probably through fear ,, it won't work twice in a day. Does that make sense? X


#8

Hi Blndie

My husband also takes one on waking and it gets him moving.

He is prescribed 3  dispersible Madopar a day and sometimes doesn't take the rescue ones....he takes them when he needs them and they work each time. Our lovely Parkinsons nurse encouraged trial and error to find a way forward.

If we are eating out or at a friends and everyone is eating 3 courses, he takes a dispersible before and after the meal to make sure he isn't struggling. Doesn't happen often but we used to refuse invitations!

If you are prescribed a reasonable amount to experiment with could you try it for a couple of weeks and see if you can get to go out on an afternoon feeling safe and confident, taking one if you feel the Levadopa is wearing off?

I do hope you find a way that works for you.

Love

GG


#9

GG, I suppose I could try, anything is worth a try i suppose, esp when i am on downtime and end up taking 1  tablet every hr to boost me back up, and then have the major jiggles, it might work taking a dispersible madopar...Thank you for your encouragement, it really does help.

XX


#10

This Parkinsons lark is all trial and error!

Every patient has to find what works for them so keep trying and I do hope you get there eventually..

Love

GG


#11

Thank you GG x


#12
  • Hi I have had PDF for the last 8years I am 70 years old . I have just started with the tremors in my legs and I find it  very hard to sleep at night, I take 4 stelevo of 125s and 6mgs of ripinarole and  1sinimet a day and I use to be on madopar which I took with water. Know my  pd nurse has swop them all round I don't know wether I am coming are going , I hope there is some body out there who can en lighten me on all this.

#13

Hi Tracey my hubby was diagnosed in Feb aged 43 but I honestly think he has had PD for years. He has had joint stiffness all the time that I have known him, over 20 years and I have always thought that his actions were slow, even down to eating ! We were glad when he got his Datscan and the diagnosis was confirmed but at such a young age we do find the future a bit daunting and frightening, we don't know how long he will be able to continue working or leading a " normal " life but my hubby does say that we all have a chronic degenerative disease and it's called ageing so we do try and live life to the full. 

Klou

 


#14

Hello macker I am quite newly diagnosed so not the best person to answer your question . Hopefully someone will see your message and can advise or you could try the nurse helpline on this forum tomorrow . Hope you feel better soon M 


#15

Hiya Macker...

your best best is to try and contact PD nurse and ask her to explain why she swapped them around....ive been on many meds and i still dont think the ones im on now are working properly, when my meds wear off my whole body goes stiff and rigid, when it happens in the evening, i know im in for a long night.

I hope you are able to get some answers soon x

 

Klou, your hubby is right in regards to the ageing thing haha....since I was young (16, im still young now at 35 haha), my reactions and movements were always slow, i used to get told to hurry up, but couldnt, no matter how hard i tried to go faster I couldnt. The future for me seems really daunting and very frightening.


#16

I am so sorry you have not found relief yet, blondie.

Have you cut down on protein and tried  leaving time either side of a tablet before eating?

Have you asked your Parkinsons nurse for advice?

They are often the best people to suggest tweaks to the meds to help.

I wish I had a magic wand!

Good luck

Love

Gg


#17
If I had a magic wand, I'd get rid of everyone's PD!! I've struggled for 9 years now to get my happy medium! My consultant kept me on my current tabletsand added Ropinirole, when I wanted to try something else. And clumsy....My god, I pick something up, it ends up on the floor, EVERY time! Everything ends up on the floor! Grrr

#18

Hi 

I'm not a regular on here but just wanted to say hi. My husband was diagnosed age 31. 12 years on he is in quite a good place at the moment, but it has been a journey.  For a long time we tried to avoid contact with other people with Parkinson's but when he joined a Hydrotherapy class he made some great friends and they all learn from each other.  Parkinson's nurse has been really helpful and supportive too.  I'm a big fan of the Self-Management programme too (but very biased!)

Wishing you all the very best, this seems to be a great forum and they have given some great advice.  


#19
Hi Blondie, so your problems started when you were 16? I started having big problems when I was 18, ive not got a diagnosis yet but as im sure you know, docs dont take you seriously at that age! Im 28 now and have lots of symptoms of PD as well as other problems too, how did you get your diagnosis in the end? And what symptoms did you have when you were younger, just the slowness? Hope you dont mind me asking

#20

hi Tracey, many thanks for responding to my blog, I hope it helps in some way.. catch up anytime just message me on the blog if you need a chat

 

Russ