Newly diagnosed and worried about severity


#1
Hi

i'm recently diagnosed and slowly coming to terms with it but some Internet research is making me worry that I may have fast progressing Parkinson's. My in worry is that my datscan showed MARKEDLY reduced dopamine uptake BILATERALLY. I've read research suggesting the worse the datscan the worse the prognosis. does anyone on here know anything about this and is markedly as bad as it sounds? I also have action tremor and stiffness/rigidity but no rest tremor -I think this also may be a bad sign.?

#2
Firstly....calm down.

When you are new to the world of PD it is often quite a confusing place. PS presents itself in loads of different ways and each and every one of us is different. Take your time to read thoroughly and speak to all you can. Your GP, your neuro, PD nurses and your relatives.

I'm not going to pull the wool over your eyes. PD is not fun. But you can make the best of it. Try separating your questions out into small molehills, rather than the big mountain you're facing.

One thing at a time....

Firstly, ask the members about the relationship between DAT scans and severity. I am not sure there is a link...

#3
Thank you Spam -

#4
Hello Morganp,


I agree please don't panic and ask for explanations to your questions and worries.

My husband has had pd for thirty years and was in his thirties when diagnosed so we have met man pwp's and people with the other Parkinson's type conditions whether they be more progressive or not.
It is not an easy condition but you do adjust to life with pd you may have many years of a reasonable lifestyle so concentrate on getting all the facts and advice from your doctors before getting to worked up although understandable not helpful to your condition.
Please keep in touch with the forum and let us know how you are getting on.
best wishes
vivian

#5
Hi Morgan
Please do not panic unnecessarily. Twelve months down the line after diagnosis I can honestly say with my hubby nothing much has changed. When we had the diagnosis after a DAT sCan we also thought the worst. We had him in a wheelchair in a nursing home everything you can think of but now we have come to realise you have to take each day as it comes and enjoy it. Our nuero told us it isn't worth the time worrying about what MIGHT happen you don't know no one knows so please talk to your nuerogist and may I add please don't read too much information as you can get yourself in a right state and stress is the last thing you need. If you need any advice there is plenty of people on here that can help you with their experiences on PD. Always someone can answer questions and there is always the help line for more complicated questions if no one can help. Take care and look forward to seeing you on the forums.

Sue

#6
hi morgan
pd varies enormously - my symptoms are exactly the same as yours and i definitely have pd and, touch wood, doing ok after 4 years, i think! datascans are not perfect and bilateralism is not unknown. exercise is good but not jumping to worrying conclusions (pathetic joke).
if you continue to worry ask your neuro or ask your nurse to pass on the worry.
cheers

#7
thanks all - i appreciate your comments. As you say I'll try to focus on today and not obsess about the future.
Bought an exercise bike today so im going to start by trying to get fitter!

#8
Hi Morganp,

I'm sorry to hear of your serious concerns over Parkinson's progression.

I have found that keeping a diary of related "events" helps to keep progress/deterioration in context. We can be beset by fears for the future, but measuring the status of your responses to this evil disease may help you to keep a firm grip on reality.

I can look back over 7 years and realise that my neurologists have found ways of alleviating the effects of pd and keeping me active. I trust that yours will be able to do the same for you.
Best wishes, morganp, and keep the faith!

haltonapp

#9
Hi MorganP,

Like all the other responses to your post, I agree whole heartedly not too worry yourself unduly. Anxiety and stress are taboo to parkinson's. I'm also relatively newly dx and I was morbid at first. But, like the others tell us, make the most of the forums, they've got experience on their side and you have the advantage of only accepting what you deem relative to your choice.

On the exercise front, go for it. I asked my nurse and neuro about my concern of over doing things. They both told me not to worry as exercise is excellent to our condition. One piece of advise I'd like to offer, the exercise bike, by all means use it, but try getting involved with a group activity if you could cope with presence of people. I did. Maybe I was lucky with finding wonderful people, who became wonderful friends, who recognise my condition, but are prepared to support my participation in their group. I know its difficult and especially having pd, but please do try to find an outlet outside your home, even if its with your own family. Trust me, you'll be surprised with the attitude to peoples reaction as pd becomes more and more accepted and understood by others.

pp

#10
Hi pegasuspaul
I wish I could get outside I was dx last year stage two.i can't drive keep falling asleep in day.i can't walk far and have every pain you can think off.so abit depressed as well with no one to give me support .i try going on the wii but find it alot easier on the computer I'm afraid
Ljohn

#11
hi morgan, i was diagnosed 9yrs ago and i am still able to drive and do most of the things i used to do i have joined my local pd support group and have found it a god send i have met some lovely people and made some good friends, if there is a group local to you maybe it might be something to think about, since joining i have done all sorts of things i go to tai chai once a week which is good for pd sufferes helps with balance i also go to hydrotherapy once a week,i have been absailing been up a climbing wall at an outward bound centre for the disabled, you can have pd and still enjoy life just with a few adaptations, as for your symptoms they are similar to mine i dont have resting tremor but have the rigidity my r/hand does,nt work if my meds dont kick in its like paralasis my whole r/side is useless until my meds start to work but you learn to cope its not easy sometimes but you learn to deal with it just take each day as it comes i am lucky my pd has progressed slowly, try not to dwell on what might be and take each day as it comes. sue.

#12
Thanks for taking the time to reply - that's a very encouraging post