Hi, My name is Bobby Walsh, I am 84 years old. I was diagnosed withj Parkionsns 5 weeks ago. I had decided I had it before I was able to get an appt. I had been unsteady at times for the last 2 years. I was having a small problem with my walking, dragging my feet a little and only had a very slight tremor in my left hand. The neurologist put me on the cl 25/100 and it has helped. My bp dropped when I started the meds and I fell on my first exercise walk I guess I fainted. Since then I have been doing fine except the tremor in my hand has gotten worse. I think the cl has caused it to get worse because it was hardly noticeable before I started the cl. That’s about it. I’m expecting to die from old age before my parkinsons gets real bad but who knows.
Hello Bobby,
Welcome to our community forum. You’re soon to meet our lovely group members, but in the meantime we just wanted to make sure you’re aware of the resources provided here.
We have a website containing loads of helpful information, from research news to ways to contribute to archived forum discussions, at Parkinsons.org.uk. Added to this, we have a free and confidential helpline on 0808 800 0303 staffed with advisors who can help with everything from medication questions to community resources. Numerous community members have received vital assistance from them, so don’t hesitate to reach out.
With our best wishes and warmest welcome,
Jason
Forum Moderator
Hi Bobby,
Welcome to the Forum. To me it seems that your meds aren’t right for you, what you need to do is to speak to your Neurologists Secretary & explain what is happening. I take Madopar which doesn’t agree with everybody but it works for me. It may help your cause if you speak to a Parkinson’s Nurse, your GP Surgery should be able to put you in touch with them. These are very good people & know what they’re talking about.
Les
Welcome Bobby
Hi. My name is Dave Scheg, and I was diagnosed using the DAT scan several weeks a go. My actual symptoms started almost a year ago. I was having trouble walking, my feet were draging and I was getting tremors in both hands. I was taking Vraylar and the doctors called the symptoms medication induced Parkinsons. I stopped taking the vraylar with no improvement, and now I am taking Sinamet 3x daily. I have limited relief from my symptoms, but nothing extraordinary. My hand trembling has gotten a little less pronounced, and my feet don’t shuffle as much. I do have trouble falling asleep and melatonin does not seem to work.
Good morning DaveS … welcome to our world. I got diagnosed last year after a positive Datscan. I too take Sinemet 2 pills 3 times a day. I too had trouble sleeping & when I did sleep I had terrible nightmares & my bedding was all over the place. This was caused by the medication I take. My Parkinson’s nurse said it was the Sinemet but I do take 4 different medications for other medical issues & the side effects are similar.
My GP would not prescribe sleeping pills & Melatonin didn’t work
So 7-10 days ago I was put on Quetiapine. 12.5mg for 7 days then 25mg a day. Now this is a remarkable drug. I get to sleep instantly & I still dream but no nightmares. The night before last I scored 2 goals for a premier league team. Strange as I haven’t played football since I was 20 years old, 50 years ago.
Best of luck
Steve2
Hi all
I am 76 and just been diagnosed this week
ticked all the boxes so no need for scan
I can see that i have been suffering with this for 6-12 months or maybe longer
Good to have a label and pleased to have access to this site
Hi JSM,
Welcome to our community forum. We hope you’ll have a look around and get to know the incredible people here, all of whom have contributed advice and wisdom throughout these pages. We’d also like you to be aware of our website, where you can find research news, archived forum threads, and loads of other information. Just visit Parkinsons.org.uk. Added to this we have a free and confidential helpline on 0808 800 0303 staffed with immensely capable advisors who offer a range of services, including helping you find Parkinson’s resources in your area.
We hope you’ll feel welcome and encouraged here.
With our warmest wishes,
Jason
Forum Moderator
Welcome Dave
Hi everyone Im Sue and my husband has Parkinsons, hes been diagnosed 2 years ago. Im still trying to grasp it all. Its been a difficult and worrying time.
HI Sue42 A very big welcome to the forum, so sorry that no member of our Moderator has given you a welcome. they are normally on the ball.
If you keep looking at our forum as much as you can, there are always some members in the same boat as yourself. Have you looked at the main site Parkinson’s UK there is a lot of information on the site to help you. I know it can be hard for you, as my hubby has to put up with me and things I do, I think one of the hardest things is accepting that your husband has PD, as when you were both told, it is hard for it to sink in. Have you thought about looking in your area for a PD group they can give you help and information. I found out that I had PD in 2010 and belive me I still am finding it hard to get my head around it. The trouble is PD can change from day to day in fact from hour to hour. Does your hubby have a PD nurse who you can get in touch with, or sometimes get to see your nusre at your GPs surgery even if she is not a PD nurse I am sure she can help you by answering some of your questions. SO RULE NO 1 Don’t think you are on your own we are all here to help each other (even if we are slow at replying) Rule 2 See if you have a local group and contact them Rule 3 Take a good look at Parkinson’s UK site. Last Rule Keep posting.
Hi there,
My name is Jane.
My partner was diagnosed with Parkinson’s 18 years ago at the age of 44.
After a few wobbles in the early years with meds, he’s been settled on Madopar, Amantadine and Entacapone for some years now with no problems.
June this year,things started to change.
He started hallucinating, saying people were after him, thinking that there were insects in his food and drink etc.
It was slow at progressing at first but this weekend in particular has been awful.
It’s the changes in his behaviour towards me that I’m really struggling with at the moment.
His consultant has put him on Rivastigmine 1.5mg to start with for the first month (which we are currently into the 3rd week of) and then upping the dose to 3mg for a month and then a review.
Just wondering if anyone else has been on Rivastigmine? And what were your results? Did it help you? How long before you felt any benefits from it?
I feel that we’ve been given this drug and left to get on with it, not really knowing what to expect.
I’m wondering why he hasn’t had a review of his Parkinson’s meds either?
Not sure where to turn for help at the moment,.
We do have an appointment with the pd nurse in December but I feel we need to see someone sooner.
Any advice will be greatly received 
Thankyou for listening x
Hi and welcome to the forum, Jane. This is a friendly and supportive group and I’m sure the others will be along to say hi and talk about their own experiences. We also have an area of the forum especially for Carers. Just click on the three lines at the top right and you’ll find it under Categories. You’re likely to find other stories there that resonate right now.
I’m sorry to hear that things have become more challenging since your partner was first diagnosed. Taking care of anyone with Parkinson’s is already a big job and we know that support is vital for you. Hallucinations, while common, can be so scary. I hope that modifications to his meds will help, but you also need to make sure you take good care of your own physical and mental health right now. While his life has changed, so too has yours. Our website has some valuable information for Carers: Supporting someone with Parkinson's | Parkinson's UK.
I know that the members here will be able to share their own thoughts, feelings and experiences. Waiting for appointments is hard and your GP may be able to fill in the gap while you wait. We are here to listen too. The advisers on our free and confidential helpline on 0808 800 0303 will be able to guide and support you during this difficult time.
Take very good care and let us know how things are going 
Janice
Forum Moderation Team
Good afternoon Jane … Sorry to hear you are having these problems. You don’t say whether your partner has any other health issues & is on any other medications.
I am 70, I have Atypical Parkinson’s, neuropathy, high blood pressure & have an Atrial Fibrillation issue. I am on a lot of medication, quite a lot of which does not get on with other medication I am on.
I have been suffering with fatigue, insomnia & incredibly real vivid nightmares & dreams. Some are very real & I wake up thinking the dreams are reality for a short while. I used to be a light sleeper but now I wake up with my heavy bedclothes all over the place.
I saw my Neurological physiotherapist at the Conquest hospital in Hastings, Sussex about 4 weeks ago & told her my problems. She suggested I go & talk to the head Neurological pharmacist at the hospital which I did. I saw him straight away & he was very knowledgeable & helpful.
One particular drug I am on is Bisoprolol, this is a Beta Blocker for my Atrial Fibrillation. He told me that this was the most likely cause of my dream / sleep / nightmare problems. So I will be changing this drug.
I was able to tell him that I am on 16 pills a day all in & the health conditions I have.
I found his opinions & advice was most helpful.
A suggestion I have is that you go to your hospital A&E & explain your partner’s very real issues & ask if you can speak to the hospital’s neurological pharmacist. Or phone the hospital & see if they can transfer your call.
You can also discuss the Parkinson’s medication with him as well. Killing two birds with one stone as they say.
The other option is to see a neurologist privately, costing around ÂŁ250.
Do let us know how you get on.
Any questions please ask.
Best wishes
Steve2
Hello Allecia … Welcome … I’m 70, I live alone & I was diagnosed in June 2023 following a positive Datscan. My main symptom is my mobility. I also have frequent gait freezing episodes. I’m due to see my Parkinson’s nurse on the 20th November for my 6 monthly appointment. I will mention the exhaustion I seem to have 24/7.
I take Co-careldopa for my Parkinson’s which helps.
Best wishes
Steve2
Hi I’m Lindy,
I’m 59 and I got my diagnosis a week ago so still trying to figure things out. The neurologist has prescribed Rotigatine patches which I’m going to start using today - the leaflet that came with the patches is pretty scary so I’m hoping someone has some positive stories about it?
It was one of my friends who suggested I should see my GP and get checked for Parkinson’s, that was in April so I’ve been living with the possibility for a while but it was still a shock when it was confirmed and especially when the neurologist told me I’ve probably had it for some years - I have other health issues so I guess that’s why it’s not been picked up on before.
I think I’m feeling a little lost at the moment and hoping to find some positivity here. Thank you for reading.
Good morning Lindy2 & welcome. Yes. a Parkinson’s diagnosis does come as a bit of a shock but you do get used to it at least I have. I’m 70 & was diagnosed with Atypical Parkinson’s following a positive Datscan in June 2023. Like you, there have been signs for a number of years.
I had a brain scan at the same time ruling our more worrying options.
I take Co-careldopa for Parkinson’s & numerous other drugs for other issues I have like neuropathy & Atrial Fibrillation. The Co-careldopa has helped & I manage my condition quite well with a few hic-cups along the way.
Any questions do ask.
Best wishes
Steve2
Hi Lindy, how are you coping after a whole week. I’m less than a week after diagnosis and I’m still reeling with disbelief. I’m 57 and just have a tiny infrequent thumb tremor, I was blaming a trapped nerve… Rather stupidly.
My neuro reckons he is 85% sure it’s PD, I’m trying hard to be positive and pragmatic but I think the media portrayal of this disease is somewhat terrifying. I’m sure we will get used to it and learn to adapt. Good luck in your journey x
Hi @Lindy2 I was also diagnosed at the age of 59 - 7 years ago. Like you I was initially reeling from the shock and thought my life as I’d planned it was over but over the last 7 years progression has been very slow and I still do most of the things I did before. My husband and I also enjoy travelling to far flung places and have continued to do this with no problems.
Until recently I was using rotigotine patches and never had any unpleasant side-effects but everyone is different so I hope they work out for you.
All the best
Clare
Thank you, I love this reply and I needed to hear some positivity… V much appreciated xx