Hello this is my first message

Hello,
My name is grace and I am 61. I am not convinced I have Parkinson’s…I was diagnosed by a neurologist a week ago, some say that I am in denial. I have been having issues with my voice disappearing. I had slight tremors when I was referred three months ago but nothing since. I am waiting for my first prescription, which I am scared to take because I have read about side effects like nightmares because when I sleep I rarely dream.

Hi and welcome, @Redgal. Hearing a Parkinson’s diagnosis is never easy and our friendly and supportive members will soon jump in to confirm this.

Whether it’s denial or something more, it’s important that you understand why you’ve received this diagnosis and how the medication might help you in your journey to feeling better. I’d strongly encourage you to book an appointment to talk about this with your GP or neurologist, voice your concerns and see if you can find answers and some reassurance. Many people worry about taking new medications, especially if there are fearful side effects, and you can discuss this too.

You may also benefit from calling our Helpline advisers on 0808 800 0303. They will be able to support and advise you through this.

It’s good that you shared your fears and thoughts here, Grace, and I hope that you have your answers soon.

Best wishes
Janice
Forum Moderation Team

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Hello Redgal … Sorry to hear you may have Parkinson’s. As a “sufferer” I can tell you there are worse things to have. I was first diagnosed a while ago. My GP said he thought I might have Parkinson’s but I heard nothing more for a year or so until a referral to see a Neurologist. Then I had a fairly quick Datscan which was positive & that is as close to proof that you can get that you have Parkinson’s. I also had a Brain Mri scan to rule out other problems. This scan was normal for a 70 year old man.

I also have Neuropathy, High blood pressure & Atrial Fibrillation. I take Sinemet for Parkinson’s & quite a lot of other drugs. Yes I have had terrible nightmares & I now take Quetiapine for that which has helped a lot.

The Sinemet has helped my Parkinson’s symptoms a lot & I know I am better taking it than not. I also have a slight tremor. My Parkinson’s is Atypical Parkinson’s.

My main Parkinson’s issues are fatigue & gait freezing. That is if I stand still for a couple of minutes & then feel routed to the spot.

Best of luck. Any questions do ask. There are a lot of helpful people here. The Parkinson’s nurses are excellent & they are free to talk to.

There is no cure yet for Parkinson’s. Your symptoms will be treated by medication if they don’t work then others will be tried.

A Datscan in a way is irrelevant as either way your Neurologist will prescribe drugs to treat your symptoms.

Steve2

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Welcome @Redgal

Hello Redgal

I’m just a bit older than you (64 in a few days) and was diagnosed with Parkinson’s in September last year. I had lost my singing voice (I had been a keen choral singer) which I thought had been due to Covid - but after a few weeks on Madopar (Co-beneldopa) my singing voice started to return (still not back to what it was, but much better). I also found my other symptoms improved - I rarely dream and have noticed no difference in this.

Ruth

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Hi Ruth,
Thank you for your reply. You have laid to rest some of my fears. Thank you

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hi grace

welcome to the club

i am 62 diagnosed 7 years ago. my experience is that the condition develops slowly and consistently.

there is list of about 20 main symptoms and most people get several of these. may take you a while to spot them

hard though it is to do try not to worry. you can still do loads of the things you could do before and technology is available to solve lots of the smaller issues. For example, I use dictation software most of the time because my typing is so crap these days due to fine motor skill issues with my hands.

I was always a keen cyclist, but a year after my diagnosis I decided to circle across America before I lost the abilities to do long-distance stuff. Still cycling though slightly less but it does the world of good. My neurologist says that the number one thing is to exercise so the trick is to find the form of exercise that you can build into your life if you don’t do something.

all the best

Julian

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Hello Grace. You are right to be cautious about this. I’d advise getting a second, and possibly a third opinion because there is no proper test for Parkinsons.

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Hi Grace,

I was diagnosed a year ago. In the early stages its a hard thing to diagnose. Try the drugs and see if you feel better, that’s one of the things that helps with the diagnosis. I can honestly say that, while I still have symptoms, since starting the co-beneldopa I feel the best I have in 5 years. I have had no vivid dreams with them and in fact mine have got less.

It’s a hard thing to take on board and be diagnosed with. There’s loads of information on the web of variable quality. ParkinonsUK’s site is not a bad place to start. You can always ask questions here as well.

BW

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Hello Redgal
You have already received some excellent advice which I hope has helped. Many people who are newly diagnosed worry about medication and particularly the side effects. The fact is all medication carries side effects, even ones that you can buy over the counter without a prescription. It doesn’t mean that everyone gets them all or indeed any of them. It can be trial and error to find what suits you best but the medication in general does work well and most of us wouldn’t be doing nearly so well without it. Don’t let the fear of something that may not even happen prevent you from trying the medication if your medical team feel it would be beneficial for you and give you a better quality of life. If it is the case that x,y and z don’t agree with you a, b and c might and in the unlikely event that nothing suits or you choose not to continue at least your decision will be based on your actual experience and not on what you think may happen.
There is an alternative which some choose to follow and that is to consider so called complementary medicines. However you need to be aware that these are not necessarily without side effects however ‘natural’ they may be portrayed as being. It also requires you to do a lot of research to find out options and what may work for you and I think you would need to spend quite a lot of time to get it right. Personally I would rather get on with living my life and will stick with the prescribed medication but it is an option you may wish to consider.
Finally, if your symptoms are mild and not particularly impinging on your life at present, you could always delay the start of medication until such time as they begin to impact on your life. If this is something you could do it may give you a bit of a breathing space in which to get used to your diagnosis and maybe start to look at medication in a more positive and less scary way. As I said, most of us here on the forum take prescribed medication and do very well on it; there’s no reason to think it will be any different for you.
I wish you well with whatever decision you make.
Tot

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I am 80 years old and recently diagnosed with Parkinson’s and this is my story. Just over a year ago I noticed I was “loosing my grip” and my arm strength seemed to have deteriorated and in May while on holiday I was alarmed to find I could no longer swim. I saw my GP who organised a blood test and x-rays of my hands. The blood test was fine but I was astounded by the X-ray report which had that there was severe osteoarthritic deterioration in both hands. This seemed to account for the deterioration in my writing and loss of dexterity. I saw a consultant rheumatologist in October and he confirmed the diagnosis and explained that the loss of strength in my arms was due to the arthritis. I asked about a tremor that had developed in my right hand and he diagnosed an “essential tremor” and advised that my GP could prescribe Propanolol to use on an “as and when” basis and this did seem to help. I asked if there was any possibility this was a neuromuscular disease and he said it wasn’t!
Later last year my brother said I was slurring my words and I thought that was so. Come January and I realised I was unwell (as did my wife!) so back to the GP. He gave me a very thorough examination and he considered Parkinson’s but thought it unlikely so arranged a blood test the results of which were normal except for low vitamin D. He thought the muscle weakness and pooor gait could be due to this and prescribed vitamin D with a view to a further test and review in a couple of months with the possibility of referral to a neurologist if there was no improvement.
I realised I was continuing to deteriorate and made a private appointment with a neurologist. The wait for this was six weeks which was longer than I expected but much better than the year it would have taken under the NHS. The neurologist, after a thorough examination, informed me that I had Parkinsonism. I knew something wasn’t right and considering the other possible neuromuscular diseases Parkinson’s was probably the least worst and although my quality of life will deteriorate I am unlikely to die of it!
I am now taking three co-coreldopa 12.5/mg/50 mg three times a day and it is helping. Looking back I can see that the Parkinson’s has been developing for quite a while and the deterioration in my archery had not just been due to loss of strength but also a decreased muscular co-ordination and gratifyingly it has improved slightly with the medication.
What I do hate is feeling unwell much of the time, terrible fatigue, swallowing problems and a deterioration in my speech. Every task seems so much more difficult and it is difficult to motivate myself.
On the positive side I am attempting to swim once a week, continue to visit the gym three times a week, one session of which is Pilates and am still OK to drive. I am due to see the Parkinsons nurse next month and better still have found this forum!

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Hi @TonyL and welcome to our forum. You may have already discovered that this is a friendly and supportive space where you can share your experiences with Parkinson’s. You’ve found the right place!

You’ve proven with your post that it can be a long journey to a diagnosis for many people. As difficult as it seems to have been, I’m pleased to hear that you’ve now got your answer to what was going on with you and have some medication that will help you cope with things.

The other members are sure to want to share their own experiences and will empathise about your feelings of unwellness. I do hope this too gets easier for you with time. Meanwhile, it’s fantastic news that you’re getting to the gym, swimming, and Pilates, and that you can get around by car.

Looking forward to hearing much more about you as time goes on. Don’t forget that if you have concerns, our friendly helpline advisers are here for you during the week on 0808 800 0303.

Best wishes
Janice
Forum Moderation Team

Good afternoon TonyL … You sound like you have older age sorted. I am most impressed by what you can still do at eighty years young.

I was diagnosed about a year ago & am also on Co-Coreldopa aka Sinemet. My Kryptonite is Gait Freezing with fatigue thrown in plus a few other add ons. I am 70 but feel 80 most days. My get up & go has got up & gone.

But as you say there are worse things to have than Parkinson’s.

Best of luck.
Steve2

Hi, Tony. Welcome to the forum. I’m new here myself.

My name is John. I’m 70 years old and was diagnosed with Parkinson’s earlier this month - on my 47th wedding anniversary, in fact. Not the best anniversary present I’ve ever had, but hey-ho.

I first noticed a tremor in my left hand about a year ago. I was filling a glass with water, and my hand began shaking so badly I almost dropped the glass.

Took me a while to get a diagnosis (poor old NHS) but after a CT scan, followed by an MRI scan, I finally got to see a consultant who sent me for a DAT scan. The DAT scan confirmed his suspicions and he told me I have the condition and prescribed Madopar 50mg/12.5mg Levodopa+Benserazide.

At the moment my symptoms are mild. The fingers of my left hand sometimes twitch and my right hand has recently started to join in the fun, but not quite so enthusiastically. I’ve been a guitarist for the past 60 years, so the finger-twitching is a tad unwelcome, as is the insomnia.

Like you, I experience fatigue and yes, tasks are taking longer and demanding more effort. I’m forcing myself to walk at least a couple of miles each day - having a dog helps - and doing exercise at home.

We’re both getting on, so I guess some of the fatigue could be the result of Father Time doing his thing. :slight_smile:

Anyway, welcome again and I hope you find the forum useful.

Hi. I have been diagnosed with PD for nearly 15 years and have recently had my medication increased for the first time. I am still only on a small dose of Sastravi. As a result of my PD diagnosis I am now on a 3-year medical driving license although it is always renewed. Have you informed DVLA (Parkinson’s disease and driving - GOV.UK ) and your vehicle insurance company of your diagnosis?
Regards
Doug