Good evening JD2024 … I’m 70 & was diagnosed with Atypical Parkinson’s in
June 2023. I did know things weren’t right for about the past 5 years.
The first thing to say that starting out there is no 100% certain test for Parkinson’s.
It is an educated opinion & there are different types of Parkinson’s.
The best test for Parkinson’s is a datscan which measures the dopamine in our brains. My datscan was positive for parkinsonism. But you can a have a negative datscan & still have Parkinson’s. A brain Mri scan is to rule out other nasties. My brain scan was normal.
Whether you have a positive or negative datscan you will be put on a dopamine replacement medication. Like you I was put on medication, the first two didn’t help, I was then put on Sinemet that did help. Low doses to start with [1 pill a day], building up to the 2 pills 3 times a day I am now on. A week ago I was put on an additional drug called Rasagiline.
If these Parkinson’s drugs help your symptoms then it is pretty safe to say you have Parkinson’s.
As a Parkinson’s sufferer I am obliged to tell the DVLA that I have Parkinson’s.
Like you Stress brings on attacks for me. It can be something simple like carrying a cup of coffee or a plate & I get uncontrollable shakes.
You should be given a Parkinson’s Nurse & get seen every 6 months in theory. The same with a neurologist.
Any questions do ask. After a while we all pick up quite a lot of information, always happy to share.
You might ask for a datscan … but you will be put on the same medication either way.
Always try & book follow-up appointments. My Parkinson’s nurse has 700 clients on his books, it is supposed to be around 300.
it’s a lot to take in. There’s loads of information on the internet. A lot of it is iffy. ParkinsonsUK, spotlightPD, michaelJ.Fox foundation are all pretty good. THere’s a helpline from Parkinon’sUK which sounds like something you need at the moment. Also if you’re stuggling phone the Parkinson’s nurse and ask for advice.
Sinemet should help you move better once you get the right dose, it should also help the tremors. You’ll probably find you feel better than you have for years. Don’t worry about side effects, if they happen they can be dealt with. l-dopa is a very effective treatment (sinemet or madopar).
Exercise is very important. It slows disease progression and makes you feel better. A lot of big gyms will offer free membership. Find something you enjoy and do it.
As Steve say tell the DVLA. You won’t lose your license, you’ll get a medical one instead. It’s a legal requirement.
you don’t have to tell people until you’re ready. There are support groups if you want to meet other poeple with Parkinsons.
If you’re into podcasts there are: Movers and Shakers - excellent and informative. and: Two Parkies in a Pod. also excellent.
There are no tests that diagnose Parkinsons. It’s mainly done on examination and response to medications. If you find when you build up the dose of sinemet thatit’s not having much effect talk to your Parkinons team. They start with a low dose and it can be increased. You don’t need to wait until your next appointment, which may be more than a year away in current times.
Take your time getting used to the idea, if you need it use the helpline,
Thanks Steve2, appreciate your message. I’m on sinemet like you have been told to up the dose, currently on 1 tablet 3 x a day. The strange thing is the tablets are making some things better and some things worse. I’m seeing the nurse in a few days.
Have a good Xmas
Thanks
Morning JD2024 … I hope you are having an excellent Xmas & Boxing Day.
A couple of things I forgot to mention. I got referred by my Parkinson’s Nurse / GP to my local hospital for a FREE 6 x 1 hour course with the Neurological Physiotherapy department. I found this a great help. I had 1 to 1 sessions with a trained Parkinson’s physiotherapist. I went to my local Conquest hospital gym every Wednesday for an hour for 6 weeks. You get tested to start with, I scored a pathetic 26/50. After the
6 week course I was tested again & achieved a higher score. With Parkinson’s exercise is very important.
I was also given lifestyle information like exercising on my own, healthy eating, reducing alcohol use [I am teetotal] & the available support network.
Worth looking into anyway.
On Youtube there are lots of videos on Parkinson’s exercises.
The other big decision I made about 10 months ago was to take out Benenden Health Insurance. It is a not for profit organisation. I pay £15.50p a month & after
6 months I can use their services. So I have just booked to see a Neurologist through them specialising in Parkinson’s & Neuropathy at the Nuffield Hospital in Royal Tunbridge wells. I can spend up to £2,500 on diagnosis, tests & scans. Yes, they cover existing conditions. I strongly suggest you look into this.
I hadn’t seen an NHS neurologist for a year despite a peripheral neuropathy diagnosis over a year ago. I get to see a consultant through the Benenden on
January 15th after only a 7 week wait which included the Xmas break.
I would suggest you keep a medical diary noting how you are each day, also changes in medication. Also get a folder for all your medical correspondence.
Thanks Steve2,
hope you had a good Xmas.
I’m meeting the Pd nurse on Monday will be asking lots of questions then, as asked very little to neurologist as was in shock.
I’m on co careldopa 12.5mg / 50mg taking 1 x 3 per day was told this is a low dosage that they build up in time.
Have been reading lots online seen things on exercise and diet including vitamins/ supplements. Have upped exercise started taking various vitamins and considering changing diet.
Will look at the private medical stuff as that sounds good.
Thanks
Good evening JD … I live alone so just me this Xmas.
I started on 1 pill of Sinemet a day for a week, then 1 pill twice a day for a week,
then 1 pill 3 times a day for a week, then 2 pills 3 times a day forever. Starting
on 3 pills a day might be a bit much for your body to tolerate but a bit late now. But
if you have had a reaction that might be the reason.
May I ask what questions you have for your Parkinson’s Nurse? [Don’t bother if its a hassle].
Was your Neurologist a Parkinson’s specialist ? Mine wasn’t [neuropathy expert from Armenia LOL].
As I said don’t forget to book your follow up appointment.
Best wishes
Steve2
Main questions for the PD nurse will be around the meds I’m on dosage levels / side effects - as feel some symptoms have got worse - some have improved / other alternatives / when I will get results of MRI and follow up with neurologist.
The neurologist is a consultant Nuro specialist.
Will defo book follow up meetings from here on in.
The Mri results are important but expect them to be normal.
One question you should ask is how do you contact him-her. Phone or email ?
My PN although excellent does not respond to my first email & by phone I get an answerphone message saying if its urgent contact my GP, which is useless. Just so you know.
Hi Steve,
Will defo look to book next session when I see PD nurse.
Can you let me know which size tablets you are on? I’m on the 12.5mg / 35mg ones?
Thanks
Thanks Steve think we are on the same ones then sorry mine are 12.g / 50 mg co
Careldopa currently taking 3 times per day with 2 tablets in the morning. Starting to build up dosage but unsure if this is low or high dosage - also read online that younger patients could consider agonist drugs rather than levodopa.
Im 45 years old
Yes, Parkinson’s patients taking Sinemet and rasagiline can experience dyskinesia, a common side effect of levodopa-based medications:
Dyskinesia
A common side effect of levodopa-based medications, such as Sinemet, that can occur in 30–80% of Parkinson’s patients. Dyskinesia is a movement complication that can originate in multiple regions of the brain. It can be triggered by adjustments to Parkinson’s medications, such as increasing the dose of levodopa or adding dopamine agonists.
Rasagiline
In one study, 32% of the increase in “on” time in patients taking 1 mg/day of rasagiline was associated with troublesome dyskinesias. However, rasagiline and entacapone can lead to a small decrease in the mean levodopa dose.
Risk factors
Factors that increase the risk of developing dyskinesia include:
I’ve been taking Sinemet … 2 pills 3 times a day = 6 pills a day for quite some time.
I think 6 pills a day is quite high.
In most cases, the dosage range of Sinemet is between 30 mg of carbidopa/300 mg levodopa and 200 mg of carbidopa/800 mg levodopa per day. Your doctor may recommend increasing the Sinemet dosage up to a maximum of eight tablets of Sinemet 10 mg/100 mg or eight tablets of Sinemet 25 mg/100 mg per day
Is delaying drug treatments for Parkinson’s right for me?
When you’re diagnosed with Parkinson’s, your specialist may recommend you start medication to manage your symptoms. But together, you might choose to wait until your symptoms cause you more problems.
We find out more from Linda Moss, a Parkinson’s nurse.
Why might someone choose to delay taking medication?
If you have mild Parkinson’s symptoms that aren’t affecting your day-to-day life, you may decide not to start treatment immediately.
Your specialist will consider the impact your symptoms are having on you – age is less of a factor. For example, if your symptoms are impacting your daily life, your specialist may recommend you start medication. If you have very mild symptoms, you and your specialist may agree to wait until symptoms become more difficult.
Some people may not want to start taking medication because of the potential side effects. If you take levodopa (the main drug used for Parkinson’s) for a long time, you might start to develop side effects, such as involuntary movements (dyskinesia). But not everyone will experience severe problems and medication can usually be adjusted to minimise them.
Sometimes starting medication immediately can be helpful. If your specialist isn’t sure whether you have Parkinson’s, they may suggest medication to see how your symptoms respond. Drug treatments can then help determine a diagnosis.
Parkinson’s symptoms can improve with medication. This is why it’s important that delaying treatment should be a joint decision made between you and your specialist.
What does the research say?
Research has shown that levodopa doesn’t slow the progression of Parkinson’s. But it can have positive effects on symptoms. Current research is aiming to understand whether early drug treatment for Parkinson’s is helpful.
So there is still more work to be done before researchers can say if Parkinson’s drugs have any effect on how quickly Parkinson’s can progress.
That’s interesting. At my meeting with neurologist we did not talk about how or if symptoms were impacting my dally life or if taking medication or not was an option or how and when to take medication I’ve had to pick this on line post meeting. I got the feeling they put me on it to rule in or rule out Parkinson’s. Since taking tablets some things have improved but some things worse and new symptoms have appeared.
Hello JD … The fact that we book an appointment to see an incredibly busy neurologist implies that we are bothered by our symptoms, which may or may not be Parkinson’s.
So … the neurologist says I can either prescribe Parkinson’s medication now OR you have a think about it & I will see you at my next available appointment which is in 18 months time.
If the Parkinson’s pills do not make a difference then you can stop taking them.
Yes, if the pills help your symptoms then you most probably have Parkinson’s.
No, a positive DaTscan does not prove Parkinson’s disease, but it can help confirm a diagnosis:
What a DaTscan is
A DaTscan, or dopamine transporter scan, is a noninvasive brain scan that measures the density of dopamine transporter sites in the brain. It involves injecting a radioactive drug into the bloodstream, lying still for about 30 minutes, and then taking pictures of the brain with a gamma camera.
What a positive DaTscan can do
A positive DaTscan can help confirm a Parkinson’s diagnosis, differentiate Parkinson’s from essential tremor, and rule out other conditions.
When a DaTscan might be ordered
A doctor might order a DaTscan if a patient’s history and exam are atypical for Parkinson’s, or if the patient’s response to therapy is unsatisfactory.
When a DaTscan might not be needed
A DaTscan is not usually needed if a patient’s history and exam are typical for Parkinson’s and they meet the diagnostic criteria.
Other factors
A negative DaTscan doesn’t rule out Parkinson’s, especially early in the disease. The clinical utility of DaTscans has been questioned because clinical exams are incorrect in 6–25% of cases.
Thanks Steve2,
Appreciate all the info.
I’ve got my first appointment with the PD nurse tomorrow, will hopefully be able to talk through some of these points with them at the meeting.
