Early On-Set PD


#1
So apparently there are approximately 6,000 early on-setters in the UK. Where are you all?

I was diagnosed in August 2012 at the age of 38. So I ‘qualify’ because the definition is anyone under 40 years old. I thought we should have our own topic area on the forum.

I had an MRI at my local hospital to check out any other problems and a DaT scan at John Radcliffe in Oxford. It was a shock to be told the definite diagnosis when I’d been a healthy person so far. I thought my shaky leg may be a trapped nerve or some other explanation. I live in Buckinghamshire and where I live I do not have a Parkinson’s nurse. Apparently they’re working on recruiting one. I look forward to having this extra support being available to me.

I’m in my same job on reduced hours as I get so tired in the afternoon. I’m helped out with the school run and chauffeuring me around by family. I don’t do anywhere near enough exercise and now feel I am ready to do something about this.

Since my diagnosis I’ve lost loads of weight going from a generous size 14 down to a small 8/10. It’s almost like my hunger switch is switched off. My GP said that my tremors cause a higher metabolism and therefore contributing to the weight loss. Does anyone have an opinion on this?

Enough, already. Your turn now, fellow early on-setters.

#2
Hi, I think I qualify as an early onsetter, at 45yrs, certainly well below average onset even if I am over 40! I am having my DaT scan next week so still not confirmed Dx but seeming likely with my Parkinsonism symptoms of tremor, poor coordination and poor handwriting in my dominant left side. No obvious gait problems yet except reduced arm swing and an occasional action tremor in my left leg. Hoping I can stay off meds for a while longer unless there is something protective I can take. Yet to have that discussion with my neuro after my scan. I'm married with 3 school aged children and like you need to increase my exercise. I'm finishing my job at Easter and plan to start Zumba and Pilates and take the dog on longer walks. Have bought myself some trekking poles on advice from my physio to help reinstate my arm swing. Wish I had your weight loss, can't say I've noticed that! :wink:

#3
hi kf73

i suppose i could be classed as young onset as i was dx at 43 am now 53, i did,nt take any meds for the first 4yrs when i did start i was so ill not just because of the meds i was run down and anemic i just could not look at food without feeling sick and i lost 2st i was 11st at the time and have never put it back on and my appetite is very good now, a few years ago a girl i worked with ( i worked with the district nurses ) she was a staff nurse so had dealt with a few pd patients she said you never see many over weight parky people and i must say she is right i am part of my local support group and i dont think any of them are over weight don,t know the reason why but one theory is some of the meds but not really sure why but i am glad i lost the weight just wish i did,nt have to get pd to do it. sue.

#4
Hi kf73, this is eck67, as opposed to car67 by car67 which is a song about a morose taxi driver, who was supposed to be driving car67 oddly enough, instead he bore the backside by talking in riddles to his brummie controller.

Where was I, oh yes, Shining a light on weight. I have had my tremor removed by deep brain stimulation and have gone from a svelte 12st to a whopping 13st+.

I'm not sure if its all down to the tremor

Other factors may include

1. Easier to eat
2. Food tastes better
3. Lighter on loafers, so able to mid-night raid fridge
4. Can now quietly open biscuit wrappers, without chainsaw

Hope that clears up your question.

#5
Oh forgot to mention, pre-pd I was on average 14st 7lb.

#6
been weighing myself in kilos -only just now converted it to stones - aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaarrrrrrrrgh!

#7
Omg!

After my last post I thought I'd check my actual weight. I'm a couple of notches of 15 stone. I know I said I'd check my actual weight but I couldn't see over my belly enough to give an accurate reading.

What a time to discover beef chilli pot noodle!
And mini bunny Maltesers
I've already picked my Easter eggs
And horlicks
Wagon wheels are on special
What a time to rediscover cheese

#8
Hi I was diagnosed at 42, But they say i had it a year before that.
It was 3 years ago when my cat scan told me the news. I was working
as a painter and decorator, and loved my 1100cc motorbike, both of which
I have had to give up. It was hard to take in what had happened,But i'm fighting
back i am with the help of parkinson's UK starting the Glasgow young onset parkinson's group. Which will be launched in April getting involved in helping
other young people has helped me no end.

#9
Hi , I was diagnosed at 40 (now 47) . Forced to retire in 2011 (not such a bad thing)so am now a "pensioner". I have ran 12 Marathons since 2001 and intend to do a few more. I also practice Tai Chi (started just over 2yrs ago). As for this weight thing...........i've lost 2 stone (down to 11st 4lb) which isn't a bad thing- i blame it on the tremour.

#10
i was diagnosed at age 40 but had symptoms for approx 18mths previous. My symptoms are very mild at the moment and only tremor when anxious or feel awkward. If anything I have put weight on but have always had a 'healthy' appetite.