Newly diagnosed


#1

Hi, I've been having problems with my hand for 9 months and referred to Neurologist. He thought it was related to a disk problem in my neck but organised a DAT scan which today has come back positive for pd. GP just given me Madopar x 3 daily. What can I expect, I'm in shock. xxxx


#2

 

Hello Hilly, welcome to the forum, although under different circumstances would have been better. We all know how you feel, it does come as a shock and takes a little while to sink in (if it does at all). Hope you will cope well with the DX and come through smiling out the other end. We have to keep smiling and  keep focused  that's the main doing to do. If you have any questions to ask there will be someone on here that will help you to get the answers.

All the best - Sheila


#3

Thank you Sheila, I have put a call in to the Parkinsons UK local contact as I don't think there is a nurse for my area.....I will be keeping in touch as better to have the knowledge I think. xx


#4

When my wife was diagnosed 16 years ago with PD it was frightening however her starting her meds as in your case ,she was helped and feeling quite well in a few weeks, it is a disorder that one can say is quite unique to every patient. One person may have have a fairly good and useful quality of life for 15 or more years after diagnosis and another person may have serious issues 6 years after Dx.

The main thing is to find good treatment & exercises plus a friend or two to help you when that time comes and do what you must do in spite of that diagnosis ,it becomes easier, once it all sinks in & the medicines start to work , there is a great amount of PD research that will help us all down the road.

Usually the hardest part of PD I hear about in my support groups in New York City at hospital is that one has in time, must get used to being a bit dependent on others to help them, and how hard that is to accept from some folks who previously  could do everything by by themselves.

Good luck,

Mike aka PD caregiver NYC

 

 

 


#5
Hi Hilly your symptoamms seem to have started similar to mine, the only difference is prior to my noticing I had a tremor I had shoulder surgery on the same side. You have been prescribed MADOPAR what is your dosage might it be 62.5 by chance.The meds tend to control the tremors quite well. But your dosage May have to be played around with to see what actually suites you. And sometimes we need a combernation of meds to conrol our symptoms. Now PD mostly progresses slow BUT for some it can be quite agressive so you should be seen every 6 months without fail if you are not call your specialist / Neuro Secretary and chase them up. You would also be wise to go to homepage and read what you might end up seeing when your symptoms progress. Sorry if this scares you I am very straight talking i know of no other way. PD has a tendency to affect us all differently due to our unique DNA. All you can do now is live life as allways and try to avoid stress worst thing for us and look after number 1 YOU. I do recommend learning about your condition this can give you back some control and with the meds take it easy on the booze front to much cancels them out. Take care my lovely and don't hesitate to contact any of us if you need support or questions answered. That is why we are all here to learn and help Oh and a stress ball may help use it on effected side. Take care BB X

#6

Thank you, its good to know there are people out there! xxx


#7

Thank you Mike, I live on my own so I think thats a little worrying! xx


#8

Hi Hilly,

Welcome to the community, I understand that your recent diagnosis has likely come as a great shock.

If you have any questions or concerns and would like to talk, you can contact our confidential helpline on 0808 800 0303. Our trained advisers will be able to provide you with information and advice about all aspects of living with Parkinson's as well as offering emotional support.

I encourage you to also use this forum when you need to, our community is for everyone affected by Parkinson's and you are welcome to share your thoughts and experiences with other members.

Thanks Katrina


#9

my hubby started out on madopar and he had no trouble. He is still on them alongside other meds now. Might need to be tweaked at the beginning to find out what works for you.

My dad is also waiting to see consultant as he has bad hand troubles. He has quizzed us about the various symptoms. My grandma also had PD. So kind of get used to it now.

Keep active and keep stress to minimum is my advice.


#10

Hilly,

Do you live near or in a large city that may have a support group for people with Parkinson's? I would try to meet other patients ,as you say you live alone , my wife and I do know several people that manage caring for themselves alone, but do need a friend or two to count on for difficult days ,at times a neighbour may help.

My feeling is as that you are starting treatment early ,you will have plenty of time to sort things out and once you start ,anxiety hopefully turns into strength with good sound planning for your future.

I understand that it the UK , Parkinson's nurse experts are the main source of help after a medical doctor  makes a PD evaluation. Heres hoping that you find a very helpful nurse that has time and the expertise to answer your questions perhaps try to write any questions down on paper  in advance of meeting the PD specialist.

When my wife and me first heard a Dx of Parkinson's  our kindly Doctor said it this way "The bad news is that you have Parkinson's, the good news is that you have Parkinson's" confused at first we thought about what was said and of course our Internist  MD was correct , as she meant it could have been a more rapidly damaging disease or rapidly fatal disease (PD it itself is not a fatal disease) and that the good news is that much research is being done and of all brain diseases that one could get  PD was the slowest and most treatable.

Mike

 


#11

Hello Katrina,

A great help that all of you provide  here ,community is so important .

I am wondering if there is an numerical estimation of the Parkinson's patient population in treatment in the UK?

Good wishes,

Mike


#12

Hi Hilly

I'm a 'newy' too! I love the picture - are they mountains in the background?

I watched a video last night of a lady with PD. Her hubby is/was a captain for the Scottish Rugby team, I believe. What I came away with is that she had an incredibly supportive family and friends - and surely, that's got to make a huge difference.

If I were in your shoes, besides seeking out a local PD group I would try to find someone who could visit on a weekly basis. For a cuppa tea and a chat. There's nothing like your own home - more relaxing. I might even phone a bereavement counselling service and have someone visit. Because, in a sense, you are dealing with 'loss', aren't you? You have been given this news and you have to get used to it. Come to terms. The changes it is going to bring you.

I do wish you well, Hilly.

Every blessing

Ian David

 


#13

Hi Ian, thanks for the feedback..the hills are near where I live in Saddleworth!


#14

Hi I was started on Madopar 50/12.5 x 2 a day then 3 x a day after 2 weeks, it does not seem to be helping... Well apart from the first few days.

What dose were you started on?


#15

Hi,same dose as you but only day 4 so probably takes a bit of time to work. Hope you get sorted with dose. x


#16

Yeah i was wondering the same been 2 weeks today since i was dx'd but switched to 3 a day today... Not noticed a notable improvement yet.


#17

Hi Mike, 

Apologies for the delay in getting back to you, I hope you're well. We currently do not have these statistics available. There seems to be a lack of accurate statistics for Parkinson's not only in the UK but worldwide. This is something that the charity hopes to improve in the future by raising awareness and pioneering vital research. 

Thanks, 

Kat

 


#18

Your meds working yet?

Been on mine just over 2 weeks and have barely improved my symptoms, wondering how long they take to get in your system?

Trev.


#19

Dear Kat,

Thanks for your reply, what we do in our city is  to look at pharmacy reports in our area of those drugs prescribed & filled exclusively for Parkinson's .this also avoids privacy issues regarding hospital patient secrecy laws.

As you say worldwide we do not really know how many PD patients  there may be ,I also think the one million PD patients frequently stated for my country is  truly under evaluated.

Best wishes,

Mike