This is my first post. I was diagnosed at the end of November. It was a shock but I admit the signs were there since last January. My handwriting became untidy and I saw a doctor about pain in my right shoulder.By the end of March and the beginning of lockdown I was helping my grandson with some online homework when I noticed a slight tremor to my arm/hand. I did manage to see the doctor again who thought the problem was just mechanical and sent me for an X-ray.
I was happy to accept this but i will admit Parkinsons was already in my thoughts. Eventually I was referred to a neurologist in Sept who sent me for an MRI on head and neck. Some wear and tear in neck but the neurologists confirmed my suspicions in November and prescribed a low dose of Sinemet.
After reading all the information and potential side effects I decided to delay starting medication and my Parkinson’s nurse was happy for me to delay until after Xmas. I think I was still in denial even though my right arm seemed much weaker and I had difficulty using my right hand. My immediate family have been very supportive- husband, daughter and son.
However I found myself crying over simple tasks- trying to break an egg , baking for Christmas. I was waking at 3/4 each morning worrying about the future. Finally rang my nurse again and decided to start Sinemet this week. This is day 4 - just 1 tablet at breakfast time. Am I totally naive in hoping to see some improvement?!
My nurse also suggested that I should postpone moving up to 3 tablets until after Xmas in case of feeling sick. 2 tablets next week would be fine.
I try to be positive and it is good to see all the positive comments posted here. I have increased my exercise and doing some yoga, walking and using the rowing machine at home.
I am aware that my husband is not sleeping well and trying to do so much more so I hope that I can become far more accepting so he will worry less!
A long post but it’s good to talk!
Welcome to the community! You really are in the right place - like you said, we have a really positive and supportive bunch. You never need to apologize or feel bad for writing longer posts. This space is here exactly for that!
I bet more members will be along shortly to say Hello, but in the meantime you’re welcome to explore the website. We have information on living with Parkinson’s, treatments and therapies, Sinemet, as well as a newly diagnosed to-do list that you may find helpful.
We also have our helpline, should you ever have questions or concerns or simply want to talk. Call 0808 800 0303 to get in touch.
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I haven’t officially been diagnosed I’ve had the MRI scan which was normal and await the next step whatever that is.
I was offered Sinemet as a kind of trial to see how I got on and like yourself decided not to start immediately. After a few in-depth chats with my wife I decided to start to see how I reacted.
I started on 1 tablet once a day and have increased to 2 tablets 3 times a day my advised dose over a period of 2 weeks.
I’m now into month 3 and to be honest have noticed a difference in my movement and used to suffer with whacky handwriting which is now somewhat improved.I also had a slight foot drag which has know eased and walk relatively sprightly.
After reading other topics etc on this forum it becomes evident that we all react in different ways not only to the Meds but also the disease itself.
I’m learning everyday like your good self and absorb any information on offer …
All the best going forwards.
Keep smiling and stay safe
Thank you Bill.
Helpful to know the Sinemet has improved symptoms. I too am aware that my right foot is beginning to drag a little. I will probably increase dosage after speaking to my pd nurse. I just want to be as active as possible for my 3 grandchildren. All boys and all full of energy!
Being able to discuss matters with members is very helpful and reassuring.
Have a happy Christmas.
Feel supported already . Lovely to know that I can ask questions and receive information easily.
Hi my name is Sam and I have had Parkinson’s for 13 years now I was diagnosed on my 40 th birthday I had the same symptoms as you but I had a dat scan right away which confirmed it .i will remember beer that day for the rest of my life.i felt just as you describe , but I just wanted to say it will get better you will begin to understand what you can and can’t do I have been lucky my symptoms have been mild I suffer stiffness in my right side but I have a good Parkinsons nurse who I see regular and my medication works well.persevere with your sinemet if you do feel sick there is s tablet to help with that or eat a biscuit to help it pass life does go on I have good days and bad but I try to stay positive exercise is important and so is yoga meditation as well but take each day as it comes .my husband also worries so I do try my hardest to involve him in how I feel he says it’s hard to watch someone you love struggle and I do get that but we muddle on together and it’s not always easy but my life is t over yet I do hope this helps you and good luck with your journey.
Hi Lizzie, I’m 75 and was diagnosed 5 years ago. It wasn’t a shock because I had all the classic symptoms, rigidly, small handwriting, tremor and constipation and was also reluctant to take medication but eventually I started on sinemet one (25x100) three times a day. I’m now on one and a half (37.5x150) a day . Apparently it’s the length of time you take medication that results in side effects such as dyskinesia but I think it’s a choice you have to make. My best medication is exercise! I go to Warrior type exercise classes 5 times a week, Pilates once a week,boxing once a week and the gym 2/3 times a week-all group exercises are on Zoom during COVID restrictions. The zoom classes cost about £6 a session but Parkinsons care and support offer free Zoom sessions and they are great, particularly boxing. Just google them and you’ll find them on Facebook and YouTube. The thing about classes is the camaraderie with everyone very supportive! Family and friends are brilliant but it’s the friendship you get from people with PD which is so important. Keep positive and use these sites and keep strong. John.
Thank you for your support Sam. I started with 2 tablets yesterday and will take your advice and build up to 3.
Getting out for a walk when the weather is not too foul! My husband is very supportive but I have to stop him trying to do too much. Took me an absolute age to wrap some presents this morning! Sellotape stuck to fingers as well.
Have a safe, happy Christmas.
Thanks John. Really useful info on exercise. I had already read about Warrior type classes. I started on 2 tabs yesterday with no side effects as yet. Would prefer to stay on a low dose as long as possible.
Your support appreciated and makes me feel more positive about the future journey .
Have a good , and safe Christmas.
i depressed all the the time . i do my exercise but my mind is always disturbed. i think my diet is not good i need sugession about diet. which foods are best for good mental health?
Hi Kashfa, and welcome to our Forums. We’re sorry to hear things have been difficult lately, but you’re on the right track asking questions that will lead to solutions. Our wonderful community is sure to have some excellent suggestions for things you can add to your diet that may help with symptoms. We also found some helpful info here https://www.parkinsons.org.uk/information-and-support/diet. Please feel free to peruse our website (there is a helpful search bar in the top right corner) for additional support, and you can also call us directly at 0808 800 0303. It’s free and confidential and our support staff is ready to help.
thank you for guidance ans support