Hi. Just diagnosed with PD after 12 months or so of trying to correct my problem leg and recently weaker arm and hand. Consultant is confident starting me on medication (madopar) will significantly help my condition. I’m really worried and anxious but hopeful of a change for the better. Just wondered what other people’s initial experience post treatment was?
Hi, @Sad0210 and a warm welcome to the forum community.
I am sorry to hear you are feeling anxious and worried
I’m sure some of our helpful members will be along to say hello and share their experiences with you soon.
In the meantime there is some information on our website for people who are newly diagnosed, which you might find useful
I hope you find it useful.
If you would like more support you can contact our free helpline, our trained advisers can provide information and support on all aspects of life with Parkinson’s. Our helpline is available Mon-Fri 9am-7pm and 10am-2pm on Saturday. You can contact us on 0808 800 0303 or [email protected].
I hope that helps a little but please do feel free to continue using the forum as a source of information and support
Forum moderation team
Hi @Sad0210, Welcome to the forum, you will find it an interesting experience, we are all different but are all in the same boat and going in the same direction. Being diagnosed with the condition does come as a bit of a shock but you will learn to live with it. What I recommend to people is not to change their life style because of it, do the best you can every day and try to put a positive spin on things. You have Parkinsons, it doesn’t have you !! Find out from your local Surgery if there is a Parkinsons Nurse you can talk to, i have found them to be very helpful in understanding what you are about to embark on. I too am on Madopar(5 x 250mg) and have a Deep Brain Stiimulator(DBS) fitted. Probably the best way to go about the disease is to totally ignore it’s presence and keep it on the back burner so to speak. Don’t be afraid to let your friends and family know that you have it, this is a good way to know who really cares about you and you make allowances for those people who can’t get their head around it. You will gain lots of friends on here as we all understand what you’re going through so you will never be alone. Take care and stay safe.
Hi I’m new to the forum but just wanted to reassure you that my mum had Parkinson’s for over 25 years and it was only really in the last 5 years that it started to limit her daily life.Getting the correct balance of medication is key. I am currently caring for my Father-in-law who has Parkinson’s and is on Madopar (3 x 100mg/25 mg). They work very well for him.
Thanks Les . Your comments and experience are very reassuring. I’m trying not to let it get the better if me and it won’t. I’m really competitive and played sport all my like. I see this as a challenge but just a little anxious about the early stages and don’t want to expect too much too early
Thanks Les . Your comments and experience are greatly appreciated. Im really competitive and just want to get on and hold this thing at bay but I’m inpatient and don’t want to expect too much too soon.
@Sad0210, there’s no need to be anxious as @Dott has said about their Mum. I was told by a Consultant that the disease isn’t hereditary, as I said to him, how do you explain that my eldest brother and now me have got it ? My brother had the most extreme form of it with head and body shake and like me, it got to both us later in life though i’ve had a tremor about me since my teens.
Here I am nine years on and fitted with a Deep Brain Stimulator(DBS), typical Consultant wouldn’t listen to my wife saying that I had TWO tremors and so after the operation there it was for all to see, not only had I got Parky but also a Dystonic Tremor, the Parky being under control by the DBS. The response was, we can put you under again and correct it, it is all very well for them to say that but the operation in itself is a daunting experience. Having gone through it once was enough but having to go through it again and running the risk of something going wrong and turning into a cabbage is something that takes a lot of thought. We will see on that one. In the mean time don’t panic and if there is something you feel I may be able to help you with just give me a shout. All the best.
I am sorry to hear of your anxiety… I am worried to as I was diagnosed by my GP on the 10 June referred to the consultant at the local Parkinson’s clinic to see him/her on the 11 July but thanks to Convid19 this proved to be a telephone call with no confirming diagnosis or prescribed treatment. A further appointment has been arranged for the 30 October but again it is a telephone appointment.
I feel that time is passing and nothing is happening…
Welcome to the forum, I hope the previous advice has helped you a little bit too, but please do contact our helpline if you want to talk things over with one of our advisers - 0808 800 0303 or email: [email protected]. Hopefully face to face appointments will be available soon.
Sue - moderation team
Hi @Jack1, If you read through my my first post on this topic and take that on board you will have a coping strategy. Don’t look upon it as having to adapt your life to it, make it work in your favor and remember to carry on as you have done as if to say, I don’t have the disease. Always look to the bright side and stay positive in your thoughts.
Hi I was a bit blasé when my consultant said I would be getting full blown PD, but then when he said it was definite and started me on Co -Caraldopa I was really brought down to earth with a bump. the first thing I did on getting was to dive for the internet, and fortunately came across a really positive chap his take went something like this so you have PD fact you cannot get away from that, but keep in mind you have PD it does not have you. Taking that on board my first move was to explain it to my family next I informed the friends I go bird watching with as I knew that sometime in the future I would need their help, this happened sooner than I expected when I lost my balance fell and landed upside down in a ditch with some help I erect again and came up smiling, nowadays if there is any likelihood of me going base over apex there is always someone by my side to lean on. Do not be afraid to tell people that you have PD, or that you may at some point require help. Myself I am 10 years on with PD, 82 years young and still positively looking to the future. here’s wishing all the very best my friend chin up and best foot forward.
Welcome back to the forum!
Thank you so much for sharing your story - it’s always special when someone with Parkinson’s can offer pearls of wisdom to others with the condition. I’m sure your advice will be greatly received by others members on the forum and you’ll inspire others to keep a positive attitude.
I’m also sorry to hear that you had a bit of a fall, but I’m glad you were able to get back up smiling .
Do take care and please don’t be a stranger to the forum!