I was diagnosed with EOPD in April this year, it was no surprise as I’d been referred to a neurologist 7 months earlier after complaining to my GP about a pain in my shoulder.
The first neurologist I first seen dismissed Parkinson’s but referred me to a movement disorder clinic for completion, I also had scans and blood tests which showed nothing untoward.
My referral to the movement clinic never materialised as hospitals were on virtual lockdown due to COVID-19.
I noticed that I had began to deteriorate and was struggling with certain aspects of my life? My walking was now shuffled and catching my foot every so often?
I just couldn’t write anymore?
I couldn’t use a computer?
Pockets, keys and buttons were now impossible to use and I’d began to violently tremor under stress or cold weather?
My movement was slow and awkward and people had noticed?
I called my gp unhappy I had not received my movement disorder clinic referral so was referred as an urgent appointment with a new neurologist.
She conducted various tests and by the end of the appointment informed me that it was indeed early onset Parkinson’s disease.
I wasn’t at all shocked nor scared?
She discussed the possibility of medication and would write to my doctor to make available cocareldopa if by chance I should need? (Unlucky for me I also have glaucoma and Parkinson’s meds have a habit of making glaucoma worse -but that’s a challenge for another day.)
Three months on from diagnosis I’m still not taking medication- I honestly don’t feel the need to as don’t think my symptoms at present are life changing or majorly disruptive?
I tend to think although I’ve had symptoms for around three years I am still mild - I’m very active and eat well.
I’m not sure how long I’ll be mild for but I do persistently present with the following symptoms-
Very mild tremor exasperated by stress
Poor dexterity - difficultly using mouse, keyboard and writing.
Drooling while sleeping
Periods of fatigue
Catching foot whilst walking
No arm swing
No sense of smell
Mild recurring tremor
I’m able to function as long as there is no stress. Otherwise rigidity, tremor and speech problems are all exasperated.
I’m now not working, as the agency jobs I was doing (special educational needs and behavioural support work) were not conducive to a good environment - always problems and issues, violence, highly stressful, so I decided to step back - this has helped greatly.
I feel better in my general health albeit with no income.
Some days I feel a fraud and feel Somewhat ok, but other days and without warning I do feel awful, symptomatic, exhausted, lethargic.
Every morning when I try to brush my teeth I’m reminded that I have Parkinson’s.
Every step I catch my foot I remember too and when I tremor or can’t go the toilet the stark reality hits home.
I’ve not told too many people about my condition as I do feel a bit ashamed and a few people I have told have dismissed the notion of having Parkinson’s- that’s been a big surprise to me and how a lot of people are uneducated about the condition.
People don’t understand why I can’t pack my own shopping, why I struggle to lock my front door, why some days I feel hungover even though I don’t drink, why I can still drive a car yet not write out a birthday card?
I’ve learned that Parkinson’s is a unique disease and effects everyone differently - in symptoms and progression.
At this moment I feel ok, yeah there is changes and yeah I’m not like I used to be - but I’m fine?
I don’t know how long the ok will last nor how long I’ll be ‘fine’ for?
Hi Denim, I was diagnosed with EOPD in 2010 & had to inform my work as I was a train driver on the London Underground. My manager was brilliant and told me not to worry plus I decided to be open about it to my family and friends as I thought what’s the point of trying to hide my illness as the symptoms will get worse eventually and how do I hide not being able to work? I guess I’m lucky as most people said if you’re after sympathy forget it but if you want support just ask. Parkinsons ain’t nothing to be ashamed of it’s just something that happens in life & some days can be harder than others. If you’re having trouble with some of the symptoms email or phone your neurologist or PD nurse, don’t suffer in silence. I was put on a tablet straight away and even managed to carry on driving my train after a spell of light duties for just over a year till I realised my reactions were too slow and took medical retirement (but it was my decision at least). A neurologist once told me after asking me when I was first diagnosed that I was still in the 6 year honeymoon period. I can totally relate to your experience of feeling a fraud as I felt like that but you’re definitely NOT! Ring up Parkinsons UK for advice about benefits, support etc. You’re not alone mate & there is help out there if you need it. Don’t feel ashamed to ask. This is purely advice from a fellow sufferer so I hope none of my ramblings cause any offence.
I was totally unaware of the ‘honeymoon period’,
I think I’m still in the mindset of comparing myself to others and what stage they’re at? I know this disease is insidious and doesn’t spring upon you overnight.
It could well definitely be that I’m in the midst of the honeymoon period? Thanks for sharing your experience.
Hello Denim, You are well informed about some of the aspects of Parky, and of the trials and tribulations!
I must confess when I was diagnosed with this ‘disease’ for want of a better word, I refused medication because I thought they ‘had it wrong’ or that I ‘felt well to take anything’ apart from the ‘arm swing thing’ ‘the shakes in my left arm’ or the ‘loss of taste and smell’. But then after the first twelve months passed I was only too glad to accept some help with medication. I have had Parkinsons for 11 years now, life is still good to a certain extent, you have the good days and bad days, the weepy days and the happy days, and as you realise it is not an easy thing to contend with. I wish you well through your life living with the whatever is thrown your way.
The best thing I ever did was suss out if there was a local Parkinsons group in my area, and to my delight there was, we meet once a month, and we have a variety of things going on, it is so much easier and invigorating to belong to this group because you are with those who are in the same position as yourself, so you can feel at ease and not embarressed. Take Care - sheffy
Cheers, good advice and I do intend to seek out and join in with local groups etc, take care.
Hi denim my husband has just been diagnosed at 43. So many, people have said sure it can’t be parkinson’s he’s too young!! Some people are very ignorant including myself if I’m honest that a young person can have this illness. Definatley a shock to the system to have it confirmed. His symptoms are simalar to your own. Waiting on an appointment with a movement team and a specialist team that deals with EOPD. No meds as yet. He’s keeping a very positive attitude and just carrying on, as normal. Good luck with your journey x
Thanks Shonab you too,
I’ve been reluctant to start meds (aside from the problem with my eyes) as I’ve felt I just don’t need them, yet.
Obviously that may change as progression hits but right now I’m relying on exercise and keeping stress to a minimum.
Hi @denim and welcome to the forums, I’m glad to see that other members have already welcomed you and shared some of their experiences of early onset diagnosis.
If you’ve not already found them, our website has some specific areas that you might find useful…
Newly Diagnosed with Parkinson’s - specific information that can be useful after diagnosis, and can be useful to share with friends and family too
Young Onset Parkinson’s - specific information on Parkinson’s for those with early onset Parkinson’s, including coping at work, benefits, legal rights & responsibilities and talking about Parkinson’s with children and teenagers.
Making it easier to stay online - useful advice to help you make using computers, tablets and other tech easier when you have Parkinson’s
Whilst coronavirus has meant that face to face activities for our support groups have been suspended, many groups are now providing activities and support online. You can find a list of our local groups for younger people here and you can search for all our groups by postcode or town by using the post code search on the Information and Support homepage here. Do get in touch with your local group to find out what they are doing.
Our Helpline and Local Adviser service is also available if you need a chat or talk things through. We also have nurse advisers on our Helpline and our Local Advisers can keep you up to date with services in your area, along with practical help on a range of topics.
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