Newly diagnosed


#1
Hi there, i have been recently diagnosed (about a month ago) and received a DAT scan to confirm it is Parkinsons. I received this letter on Saturday but although i hvae known for about a month the letter still was like a knife through the heart. I wish i could say i was coming to terms with this but to be honest i am not sure i am.The thing for me is i think i am at an early stage with a slight tremor in my hand and slight stiffness/ slowness in my arm and what is the long term prospects for me as i am just 51. My life is not really affected and the neurologist advised not to go on any medication. How do you know when is the right time. I feel as if i have hundreds of questions but not sure how or what to ask.

I am sorry for the babble

#2
Hi,
When to start meds? It is generally, but not exclusively, a case of starting when you are no longer happy in the struggle to cope with the symptoms you are personally experiencing. All of the current meds, are in the words of my Neuro "a cover up job". PD progresses with or without the meds, it's all about managing the symptoms.

I was dx at 45 and started meds straight away, but there are posts on here of people who have continued med free for at least 2 years post dx. PD affects us all in different ways. PWP all have different attitudes and approaches to the problem, our age range is very wide, and as for the permutations and variations of the meds available, well, that's a subject in itself.

The diagnosis of PD is indeed a shocker! But this forum illustrates having PD does not have to mean the end of everything, but more a case of starting to do most things differently.

Hope this helps.

Regards Tractorman.

#3
I can completely understand what you're going through. I, too have recently been diagnosed with PD, although no shakiness at all, just a slow response down my right side. It's an awful feeling to wake up every morning knowing that you have an incurable disease. Have you been advised to go for physio? I have found the exercises help a lot. I reluctantly started Selegiline tablets only today and hate the thought of being on medication for the rest of my life! I am 63yrs. old, but 21 in my heart and have been a very fit, healthy, fun loving person all my life. Now I'm supposed to avoid alcohol, cheese and other foods high in Tyramine. Oh joy!!!!! Why haven't they found a bloomin' cure for this disease yet????

#4
hi pkman8, i was diagnosed 9yrs ago and did,nt start on meds for 4yrs but i knew when the time was right and you will to i felt i could cope but i new when i needed them, pd treats everyone differently and some have slow developing symptoms and some are more quickley progresive so some people start earlier on the meds than others you are in the early stages so if you can cope without then good for you good luck sue.

#5
Hi I have also just been diagnosed with pd I also have a weakness on my right side and find using my computer at work more challenging. I'm 60 and young at heart and find this very frustrating not noing what will happen next very scared . . I'm on rasagiline makes small difference. I to do not want to go on the heavy drugs yet as what you read looks scary

#6
Hi
I was diagnosed at 52 with left tremor, dragging leg and sleep disturbance. I was advised not to go on meds until needed and 6 years later am still managing without. I have supplements as recommended by a naturopath and do some other complementary therapies eg Bowen,as well as good food, rest, lots of water. I'm off to a yoga class in 20 mins.
Recently I was really thinking it might be time to go on the meds then realised I was being really slack on my 'regime' and not looking after myself as well as I could. I got more organised again and a week later I feel much better. Maybe its placebo; who cares if it works? My neuro agrees I don't need drugs yet; he's the 5th one I've seen and they are all quite convinced I do have PD, just a slow mild version.I'm still driving and running a business full time.
Everyone is different but its not inevitable that the worst will happen to you. Prepare for the worst but expect the best is my motto.
Good luck and explore all your options once you've adjusted to the diagnosis. (that took me about 18 months)

#7
HI everyone,

Thanks for the positive replies it has been comforting to know that people are willing to share their experiences. It is obvious from reading them and reading the forum that everyone responds to this disease differently but one thing is for sure those of us in the early stages struggle to come to terms with it. I just hope that i can become more positive as time goes on and surely with the support of people in this forum and the parkinson support groups that will be the case.

thanks again for the replies.

#8
hi i was dx in 2007 it was a shock at frist but when i was told i cry and thought it was the end .i was in full time work and hard children and i did know how it was going to affect us all i was so upset about work because i in joyed it but i had to give it up because they found out i had other things wrong with me .it has been hard but it takes time but i took up art again to help .and i go to pd group once a month .so when you are frist dx with pd you think there is now where to turn to but you got pd groups which i found is a great help so if you would like to talk any time just get in touch :smile:

#9
My partner was diagnosed 3 weeks ago he is due to see parkinsons nurse on monday. he his still waiting to here about the scan. Can anybody tell me how long the waiting is
Thank you

#10
:grin:Good morning Mr pkman8, feel free to babble away I fully understand what you are going through beleive me. When I was first diagnosed it just did not sink in, I was having problems cleaning my teeth doing my laces, small things, I told the consultant NO YOUR MISTAKEN but the MRI scan proved him correct, that was in 1999 I was 58, now I wont go into details I am sure you will have been on the Laptop and researched PD and will have your own fears and dissapointments and probably nothing I say will help, but dont give in dont let it intrude you are young, exercise is a must drink plenty of fluids not the alcoholic kind, ,,,see my warning on Daily Living with PD but above all keep your spirits up as I say you are young you can fight hard the Research carried out is very promising and im sure a cure will be found soon I myself have very complex PD and have tried almost every combination of drugs , I am on Madopar and Tolcapone and maintain good stability with these,but everyone is different and I have good and bad days, so never give in take advantage of all the help and care facilities you can there are good people out there seek them out and above all never be afraid to talk about it. (fedexlike):grin:

#11
:grin:
Hello Scoobyskoda, good car skoda, the scan should be very soon as they dont like to hang around when dealing with ailments RE the Brain , dont be alarmed , its perfectly straight forward, I asked if I could see the results and to my suprise they did, it was amazing seeing the inside of my own head.
fedexlike

#12

Just re-read all these posts, one year on. It has taken all this time to come to terms with having PD, but if you can keep a positive mental attitude, it certainly helps. I also have two friends with the disease and we meet up once a month for a chat and even manage a laugh or two! I find that these meetings do me more good than talking to my neurologist or PD nurse. I also took up the offer of talking to a clinical psychologist, which was a very bad experience in the end, as he upped and left his job without any explanation, after 5 sessions. 


#13

Before taking any medication I suggest you look into Conductive Education and how it  can help you cope with what parkinsons has in store for you.