I’ve recently been diagnosed with Parkinsonism Syndrome. Ive had the DatScan and awaiting MRI. I’m 42yr old man with a young family, youngest is coming up on 1 and the eldest is nearly 3. And to be honest I’m a bit lost and unsure of what this all means or how it plays out.
Hello Andy,
Welcome to our forum community. You’re sure to hear from the group soon, and in the meantime we wanted to make sure you’re aware of the resources we can provide, and perhaps some answers to your questions.
Our website is kept up to date with news, research, and it’s where we store our archived forum threads, so if you don’t see a topic you’re interested in here, give it a search on the site. This link might be a good place to start with basic questions about Parkinsonism: Types of Parkinson's | Parkinson's UK.
Added to this, we have a free and confidential helpline on 0808 800 0303. These advisors are really the stars of the show, as they can help with everything from financial aid to psychological support for people with Parkinson’s and their carers to finding groups and activities in your immediate area. Do reach out to them, even if you just need someone to listen.
We hope you’ll enjoy getting to know the community, and we wish you our very warmest welcome.
Jason
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Good morning Andy … I am 70 years old & was diagnosed with Atypical Parkinson’s in June last year following a positive Datscan & a normal brain Mri scan.
My symptoms are a slight tremor & the more worrisome “gait freezing” plus a few miscellaneous add ons.
In hindsight I have had Parkinson’s symptoms for about 5 years.
I am on co-careldopa [sinemet] for my Parkinson;s symptoms. I have other health issues that cloud my treatment.
You haven’t told us anything about the symptoms the have & why your medical team think you have Parkinson’s.
Having a datscan is a good start for your diagnosis. Although a positive datscan does not prove 100% that you have Parkinson’s much as a negative datscan does not prove that you don’t have Parkinson’s.
The Mri brain scan is to rule out more sinister reasons for the symptoms you have.
It doesn’t prove or disprove Parkinson’s.
As I say do give us more details if you wish to.
Any questions please ask.
Best wishes
Steve2
Thanks for your reply and apologies for the limited info, I’m not really used to talking about myself or my life.
In October 21, I noticed a tremor in my right, which is nothing unusual for me as I have had an inherited Essential Tremor in both hands from birth that wouldn’t have affected my normal everyday life and was barely noticeable, apart from when in stressful situations. But this tremor was different, it was constant and affected only my right hand.
After consulting a GP it was put down to a worsening of my Essential Tremor and I began taking 20mg Propranolol once a day, and a referral to Neurology. My job at the time was quite stressful. This worked for awhile but after awhile it became ineffective. The dose was increased which seemed to work but only for a short period so I stopped the medication and thought I’ll just manage as best I can.
Fast foward to about 4 months ago and I’m back with another GP on an unrelated matter and he observed me ‘pill rolling.’ And I was advised this is something that can be observed in people with Parkinson’s. Another referral to Neurology, which shot me up the waiting list. I had my initial consult approx 2 months ago and my DatScan about 4 weeks ago. On receiving the results it was discovered that the Putamen on the left showed decreased tracer uptake described as severe with moderate decrease on the right.
My consultant has advised that results are consistent with Parkinsonian Syndrome, but requires a MRI to confirm.
On the follow up appointment on Wednesday just past (20th) he confirmed that he still wants the MRI but is going to put me in touch with a Parkinson’s nurse so that I’m better informed. My take on thatis, if it walks like a duck and talks like a duck, then it’s most certainly a duck.
He also feels I am early stages, which I would agree with. My symptoms haven’t really changed, just got slightly more aggressive.
My current symptoms are still only affecting my right arm and hand. Tremor is quite aggressive at times, it fluctuates depending on my level of tiredness and time of day, mornings are better after a good nights sleep. Evening is a pain as my arm feels tired and aching from the tremors.
No medication discussed as of yet, I suppose he’s holding off till he can give a formal diagnosis after MRI and after seeing me in person as both consults were via Tele link. He was in Belfast and i was at my local hospital in Enniskillen.
Thanks again for your reply and the pointers, they were much appreciated.
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Good morning Andy & thanks for your detailed reply. My first thought is that you seem to be getting excellent medical treatment. Things seem to be moving quickly for you.
In NHS England things are certainly a lot slower.
As I said there is no 100% certain way of diagnosing Parkinson’s & there are a number of different types of Parkinson’s you can get diagnosed with. I was diagnosed with Atypical Parkinson’s & was told by my neurologist that this form of Parkinson’s did not respond well to medication & did I want to bother. He then left the NHS & I am under the care of an excellent Parkinson’s nurse. He is in favour of treating me with medication & I am on Sinemet [co-careldopa] 2 pills 3 times a day & this does seem to help.
No doubt you will be put on one of the dopamine replacement medications & see how that goes. If it helps great, if it doesn’t they will try another medication.
The Mri will be to rule out other causes of your symptoms, a normal brain mri scan means a Parkinson’s diagnosis.
Following my positive Parkinson’s diagnosis I had to inform the DVLA & they get the ok from my medical team that I am fit to drive. So I now have a 3 year medical driving licence.
There are quite a few people on this thread that have had Parkinson’s for years. Some originally diagnosed at your sort of age.
I have had prostate cancer which is way more scary than Parkinson’s. I’ve got used to having this condition & I am still enjoying my life.
Any more questions please ask. I’m sure others here will want to support you. Please keep us informed as to how things progress.
Best wishes
Steve2
Hello Andy,
I’m 45 y. o., diagnosed 6 years ago… I was depresed and confused for a few months… just want to say, nothing will happen soon, yes, my condition is worst than 2018, but I still working, taking care of children… I hope we are enough young to wait for some new cure
Take care!
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Hi Andy,
it’s a lot to take on board. Your neurologist is doing a few extra things because you are young. I was diangnosed at 47, probably had it symptomatically for 5 or 6 years before that. I’m still working (all be it a year and half later). I know people who are still working a decade later so a diagnosis is not the end. Medications help, a lot, I haven’t felt this well in 7 years. When to start is always the question, it doesn’t have to be straight away if symptoms are mild and don’t bother you.
Your kids will be fine. You just have to get your head round it, which will take time. There’s loads of information around of variable use. ParkinonsUK is good, SpotlightYOPD as well and in America THe Michael J Fox foundation. There’s also guides on how to tell your kids (for when they are older).
Give yourself some time, get used to the idea, see what the MRI shows and the Neurologist says. Happy to chat if it would help.
Podd
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Hello Andy, sorry that you’ve joined the selective band of brothers & sisters on the Parkinsons journey. At aged 42 not what you want to be spending time giving thoughts and concerns to.
Parkinson’s UK has information for Young Onset Parkinsons. I suspect you are dealing with shock despite having your suspicions.
My husband was diagnosed with atypical parkinsons following left hand tremor and no swinging arm when walking. He was aged 69 and we had noticed earlier symptoms such as loss of sense of smell and some loss of facial expressions for probably the previous 5 years prior to diagnosis. Indeed during the first consultation with a neurologist, he accused my husband as being a man in a mission to find something wrong with himself. It took a further almost 3 years to be seen by another neurologist.
That aside medication has helped my husband hugely. He continued working as a consultant electrical engineer until he was 74. He was always a regular gym user and cyclist which he felt helped hugely physically and mentally. Sadly totally unrelated he contracted Sepsis which has caused orthopeadic problems for him causing him to become a wheelchair user. Throughout this his Parkinsons has not stopped him living his life to the full.
I hope your life will settle and let you go about being the father you want to be without hindrance. Very Best Wishes Jane
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Hi all, thank you very much for the time you have afforded me by your very thoughtful replies. It’s brought me some relief and insight into the broader world of Parkinson’s. As it’s only my arm and hand really affected at the minute, i find it does hinder me at times but in the 3 yrs I’ve learned to adapt and come at things from a different approach. It does seem to work as I’m still able to work in my side job as a barman, just don’t ask me to carry a tray of drink, I do make a mean shaken not stirred cocktail though.
I was shocked to see the diagnosis in black and white, but I’ve 20yrs under my belt as a carer so I guess I already knew in my mind what it was. I think my family were more shocked than I was to be honest. And to be fair, with 2 young kids, a wife and 2 jobs I haven’t time to sit and say why me. What also helped I found in accepting Andy 2.0 was the fact I had already been living with it for 3yrs, the only difference being it now had a label. Also what took a great weight of my shoulders was i chose 15 of my closest friends and just said what had being happening and that helped massively. My biggest worry about the whole thing is people viewing me differently and treating me differently, which some will do. But i suppose I’m still just me, but with an added extra.
So once again thank you all for your replies, it’s nice to know that when a bad day does come and it will, but for now I’m happy out, that there are people to pick you back up.