Hi Everyone, I’m only just about working out how to navigate the forum( doesn’t take much to confuse me!
How is the forum different to Parkinsons Uk fb group?
I around 18 months, doing ok, don’t think I’ve got any worse as doing a fair bit of exercise( even when I don’t feel like it!) Like most of us rattling a bit with meds but apparently on a low dose.
Is the forum just for people living with PD,? I’ve got to admit I got pretty upset re some of the family members/ companions posting some pretty horrific stuf making me feel as if most likely will become a burden and really not very good for my mental health! I understand family members should have somewhere to vent but maybe in a different setting?
I’ve got Orthostatic tremor too( just lucky🤪) , the admins have just reminded everyone that it’s a forum just for those of us living with PD , was wondering what everyone else thought?
Hello Mary … You have done the right thing in posting your introduction here. We can all read what you have to say & share our experiences which might help you or us.
I do think that if someone has Parkinson’s it may be worse for loved ones. I live alone & my Parkinson’s is my issue & no one else’s. I think it is better that way. I only have me to think about.
I am 71 years old & was diagnosed in June 2023 after a positive datscan.
I was diagnosed early this year. I agree with Steve2 that those who are PD and their families etc are just as affected as each other. I find it good to see and be aware of both sides of the story, as it helps to keep my mental health more stable.
Hello everyone, I am new here. My Dad has recently been diagnosed with Parkinson’s, he is in his mid 70s and initially struggled with a frozen shoulder and arm/hand tremors. This has now progressed to mobility issues and stiffness and today he has been prescribed Sinemet to see if that helps him. I would love to know anyone who has had success with this drug as my Dad just needs to see an improvement to give him some hope and motivation because currently he is feeling very dejected and low, and I am worried about him physically and mentally.
Any advice or personal experience would be much appreciated.
Thank you.
Welcome to our forum community. You’re sure to hear from others who share some of your dad’s symptoms and have some experience to share. In the meantime we just wanted to be sure you are aware of our support services and helpline. Have a look at this page of our website as you like: https://localsupport.parkinsons.org.uk/. And note that we are available on 0808 800 0303 if you’d like to speak with a friendly and knowledgeable advisor. The call is free and confidential, so do take advantage of this resource if you can.
Hello JJ76 … I am 71 & was diagnosed with Parkinson’s in June 2023. I have tried Madopar & another drug I can’t remember which, neither worked. But I have been on Sinemet for about a year & really feel it has made a difference BUT I have had sleep issues as a side effect. Overall I am very positive about the drug.
Everyone is different though & react differently to medication. Don’t put every health problem down to Parkinson’s. I have quite a lot going on.
Any questions do ask.
Don’t forget if he drives he needs to tell the DVLA by law.
Hi Steve2, thank you so much for taking the time to reply. That is really good to hear and I will make sure my Dad is aware that he needs to inform the DVLA. Yes, we are going to see how the new drug works and there’s still room to increase the dose he is on should he need to.
He also recently had Botox in his arm muscles to try and help with the tremors but sadly, it didn’t help despite having numerous sessions with different strengths. Just hoping that Sinemet gives him some sort of improvement because I think this will really lift his spirits and make him feel a bit more optimistic.
Thanks again, and wishing you well.
With Sinemet it is important to start on a low dose & then increase. I was on 1 Sinemet tablet a day for a week, then 1 tablet twice a day for a week, then 1 tablet three times a day for a week. Then 2 tablets 3 times a day which is where I am now.
Hi Steve2,
Thanks again for your responses, they are much appreciated.
I am sorry, it sounds like you have been through a lot over the last few years.
I wondered if you struggled with aches and stiffness in the morning?
My Dad is really struggling with this and I have read on this forum that it is very common and seems to be that it eases off once you get up and get moving. My Dad has a call with his nurse tomorrow and he is going to ask for any stretches / exercises which might help.
He only started taking Sinemet on Thursday so it’s only been a few days so far - he is currently taking 3 x 50mg tablets per day so might be that he needs to increase if no improvement after a few weeks.
Anyway, thank you for listening to me and sharing your valuable insight and advice.
Best wishes,
Joanne
Have a look on YouTube for information on keto or intermittent fasting and PD, red light therapy aka photobiomodulation and PD, and exercise and PD. These alternatives have been used with pd meds and have been very helpful.
Hi new to the forum i live in beverley yorkshire and have parkinsons from diagnosis 4 years now bur prop 3 years before that now taking sinemet 3 times a day and ragasline once a day , tremmer in leg has now stopped put comes back if i get stressed now 81 year old
Afternoon corlyon and welcome to the forum. I am 71 years old and was diagnosed in June 2023. I am on exactly the same medication as you & I find it helps me.
Hi Mary. I am lucky that I have a wife who helps me get out of bed and helps me get dressed. The mistake I have made is not to get involved with other Parkinson’s sufferers. I am too independent. It’s the way I was brought up. It worked for me when I was in the army but not so much when I am battling Parkinson’s. My wife still works full time and is fortunate that her employer has sent her to counselling so she can vent her frustration to a stranger. I have to make do with the dog and even he is putting his paws over his ears. I think it affects everyone who cares for us. We all show it in different ways. I think most of the time it is well meaning. I have been watching a podcast called the secret lives of Parkinson’s. It has helped me cope with my illness. I guess we all have to adapt. Geffino.
Hello, I’m Stephen, seventy three, retired to north Wales, from ministry in the Methodist Church due to Parkinson’s Disease (diagnosed about ten years ago). My wife is my carer, and my world is now poetry - revisiting the English Literature I read at university in the early 70’s. Writing is a distraction from the pains of PD, or fills the time of insomnia in the early hours. My only Forum activity has been poetry posted to the Creative Corner over the last couple of months; I’m now getting round to saying who I am! I am also active on the site “Poets with Parkinson’s” (the title chosen as preferable to “Parkinson Poets”). I rarely want to write about the subject from which I seek distraction! I have been fortunate to have had pieces curated and published by online poetry sites, printed journals and anthologies. I tend to write with rhythm but not rhyme!
Just seen your post. You sound rather like my husband - too independent? He’s not a group person which is a pity as I reckon we could both learn a lot from other people. (He doesn’t have a dog either!)
Thank you for your post - it helped me & I’ll try to find that programme/podcast.
) Like most of us rattling a bit with meds but apparently on a low dose.