Hi, I’m new to this group/site. I am 42 years old and a couple of years ago I was diagnosed with an essential tremor. In the last 6-8 months the tremor has increased in my arm/hand and can be very erratic but especially when I’m not active. The tremor is in my right arm but my one finger seems to have a mind of its own. More people are noticing the tremors and it makes me very conscious of it. I have also noticed I have lost the swing in my arm when I walk too, which can affect my balance. I also suffer with laughing fits which occur out of the blue, but I am unable to control and at times are ridiculous (like an animated clown). I have been seen about the laughing and have been referred to neuropsychiatry 18 months ago but due to pandemic not been seen yet. I contacted my GP and was finally able to speak briefly over the phone, but they are not seeing patients 1:1. They have emailed back to neurology to see what they say, but no response as of yet. I have to ring the doctors weekly to chase but nothing yet. Its really starting to get me down, and I know the departments are stretched at the moment and don’t feel it’s right for me to make demands but I am struggling and on top of it all I work as a TA and I’m due to return back to school September, where I know they will notice my tremor more now. I’m wondering if this may be the start of parkinson’s due to many of the symptoms fitting my own.
Hi Llamos,
We’re sorry to hear you’ve had some difficulty getting the medical attention you need during these uncertain times. Obviously we encourage you to direct all medical questions and report all changes to your GP and medical team, but we do have a helpline at 0808 800 0303 staffed with highly trained advisers who can help you find alternate routes to medical assistance, among myriad other forms of assistance. There is a danger of “information overload”, particularly pre-diagnosis, when crowd-sourcing data, so while you are sure to receive a warm welcome from our forum community, we encourage you to take your time. Please do give our helpline a call, and we wish you the best with your diagnosis. If it does turn out to be Parkinson’s, you have found the best possible group of people to aid you on your journey.
Warmest wishes and welcomes,
Jason
Mod Team
Thank you. I appreciate the guidance
and I am not expecting any medical advise. I have been experiencing symptoms for a while now and just looking to see if others experience the same. I think the idea of this group is a great place for people to chat and open up about things that they may find hard with family and friends. Thank you for welcoming me too 
Hi Morna,
I’ve only just read your post. I know how exasperating it is to be unable to write normally. So I sympathise, this has happened to me too!
I used to write letters ( I do use a computer as well) but I loved writing to my grand children. I am also a poet, so I sometimes need to get lines down on paper asap!!!
I need a new computer so have decided to buy one or an app that does Speech to Txt. Might this help you too? Best wishes Caz
G’day folks…I’m Ian and wife B and I have lived in Northern Ireland for a little over 6 years. One year into our new life B was diagnosed with PD. This led to a permanent state of depression. In July 2020 B had a mild stroke that went undiagnosed and then had a further stroke in December 2020. She has recovered her faculties to a large extent but she has lost a large amount of weight and lives a double life of delusion and occasional hallucination. She has become somewhat tottery on her feet and had several falls. She is intermittently incontinent. I am B’s willing carer, although I struggle with her relentless and repetitive delusions. I refuse to ‘give in’ to her firm beliefs, which leads to tensions and disagreements. I know that I bully her and express my feelings of frustration and incompetence to her in an unreasonable and hectoring way. I’d love some advice about dealing with the delusions.
Hi Ian,
We’d encourage you to call our helpline team at 0808 800 0303 as they can refer you to local resources as well as share further advice for carers in this situation. The advisers are friendly and supportive, the call is free and confidential, and they have done wonders for many in our forum community, so we think this is the best route to the most helpful advice.
Thanks,
Jason
Mod Team
Hi all,
My husband who is 53 was diagnosed just last week. Wasn’t really a great shock as the signs had been there for some time. We are being positive because what else can you do. We have already thrown ourselves into exercising and keep moving. Husband is starting Ropinirole today and I have to say some of the side effects scare me. However no point waiting for these side effects to happen because they may well not.
Look forward to chatting with you all.
HI Lizzyg
am sorry to hear about your husband, but your right , stay positive.
I’m on Ropinirole too, and other than nausea first couple of weeks , there has been no signs of other side effects . Each day at a time
Esme
Hi Esme,
Thank you for your reply. Glad to hear you have had no side effects from Ropinirole. Fingers crossed my husband will be the same.
I do have to say I have never known such a confusing forum. I just can’t work out how to start a new thread. I will have to ask my question on this thread so hope someone has an answer.
My husband had a water infection come on last night😱 just waiting to hear from our out of hours if he can be prescribed antibiotics. Anyone know if its OK to take antibiotics along with Ropinirole? He only started on Ropinirole yesterday so far only taken 1 tabley 2mg. Do antibiotics have effect on Ropinirole working.
Thanks in advance.
Hi Lizzyg
I could not say for sure as I not a pharmacist. But im on 10mg Ropinirole and I had antibiotic’s while taking this medication, if that helps
Esme
Thank you Esme he was fine with the antibiotics and they seem to be working.
Have a lovely day. Noticed some of your mosiac artwork they look wonderful. Lovely to have a hobby that you really enjoy x
Hi @Lizzyg ,
Glad to hear that your husband and yourself has taken the diagnosis in a positive way.
Regarding Ropinirole I am on Ropinirole over 2 years. Initial days it made me sleepy , other than that I am ok so far. Not everyone gets affected with side effects but we should be aware about it.
Normally antibiotics are ok to take along with Ropinirole, but again depends on which antibiotics he is taking. Make sure you speak with gp and pharmacist before starting new medications.
Take care
Tinku.
Hi Tinku,
Yes you have a choice to sit around and mope about it feeling sorry for yourself which will only put your life on hold or you can kick Parkinsons up the ass and continue to have the life you want.
Thank you for your advice on the antibiotics. Good to hear you haven’t suffered too much in the way of side effects on Ropinirole. The one thing my husband has noticed is his tremor in his hand seems to be a bit more severe since taking Ropinirole if that’s the correct word. He is sensible enough not to expect too much on just day 3 of taking Ropinirole but feels its a bit weird the tremor has changed. Not forgetting he has also suffered a water infection which has made him feel a little groggy. So good to have other people’s in put.
Hi Lizzyg, I can’t add anything of worth to you and previous postings , except I admire your. ‘Kick up the ass, attitude. Please check out my thoughts on **banjo-boy which I hope will raise a titter. Good luck!
Hi banjo-boy,
Thanks for your reply. I will definitely check that out, love a good titter to brighten my day😁
HI Lizzyg Sorry to hear about your hubby, I have been on Ropinirole (ReQuip) now since 2010 when diagnosed with PD I started on a very small dose now on 12mg per day,Plus other meds. Just take each day as it comes read the leaflet and you can watch your hubby and see how it effects him as we our selves don’t allways notice side effects. You can allways speak tp your husbands nurse, as it sounds as though you are his carer. There is so much you can do to hep your hubby, by joining the Froum you have taken the first step. Join Parkinson’s UK where you can allways get advice on anything to do with PD and much more. Most important thing of all is if you have not yet registerd then register your self as a carer. Not to over look DHSS if you are reg as his carer you can get paid (small amount) but you and your huby ae both worked hard for this it is not a gift your both entitled to it. Your hubby proberly will see his PD nurse every six months or when she needs to see him, she is your life line, dont be afraid if each time you see her she changers his meds/dose, last time that I saw my nurse it is only the secod time that my meds have not been changed in 20 years, I hope this helps, do keep it touch with us all. You are not alone Stay Safe.
My mum has PD for 14 years, she is 86. I moved my mum nearer to me, into a retirement village 7 years ago, care team on site. It’s been a game changer. I can help her daily and she has carers in. It has meant selling the family home, but she has avoided having to go into residential care. There’s a shop on site, restaurant, hair dresser etc etc. we invested the house money and she uses the interest to pay for her care calls, plus getting attendance allowance, I also get carers allowance. She’s no longer isolated, 5 mins from town, gp, etc
I was diagnosed around 10 days ago and reeling from the shock of it. I’m only 51, very active and healthy so do feel utterly in shock. Doing my research on what my future might hold is utterly depressing me. I want to reach out for support but as every time I google anything or research anything brings ups phrases such as ‘can’t talk, can’t walk my daughter down the aisle’ etc it’s really getting me down. I’m wondering if other people early in their diagnosis feel the same. Seems like every time I find something positive I research a bit deeper and discover the person who wrote it is now dead! Do others feel like this? I’m desperate to stay positive as at the moment I have such mild symptoms and before I was diagnosed I didn’t feel at all depressed!
Hi Emily,
We can certainly understand what you’re feeling, and you’re absolutely not alone in this. We would refer you to our website, which concentrates on pure data, promising research, and forum threads like this one where PWP help support each other and spread loads of encouragement and positivity. This is a great starting point for those newly diagnosed. Also please don’t hesitate to call our free and confidential helpline at 0808 800 0303, as our advisers there are warm and knowledgeable and want to help.
All our best,
Jason
Moderation Team