I was recently diagnosed on the 1st July following a Datscan in March to rule out Parkinson’s. As you can imagine it was a complete shock.
The consultant just said not to worry to talk to my GP and he would see me in 6 months
I saw my GP a few days later to pick up meds (Madopar) and they gave me lots of printouts from NHS website but no other support available.
When I went to pick up my second prescription I saw a second GP who was not at all helpful and said he hadn’t worked with anyone with Parkinson’s my age before (I’m 48) and didn’t really know much about it in younger people.
He put meds on repeat prescription and said he would see me again after I saw the consultant if he needed to.
I feel totally abandoned with no one to talk to and no support when I have so many questions.
Learning more about the symptoms it’s obvious they have been around longer than the two years since my tremor became noticeable.
I have no idea what the future holds and so many questions
Sorry to read this. As if you haven’t already had the long wait, then diagnosis… to now feel like there’s no support
Well first and foremost, this forum is ace… Full of lots of very supportive people!
It’s frustrating because it’s very apparent how important it is to have a supportive and understanding consultant and also GP. It is a struggle if you don’t have these. However you should have access to a PD nurse shortly ? And I would suggest the key thing here is to find out as much as you can about what other support you can get, local groups etc, and also self educate!
I completely empathise, I was recently diagnosed at 40 years of age with symptoms started when I was about 37. It’s a scary time. And it does appear that some professionals are very hesitant when it comes to both diagnosis and support because of our young age. But this should not deter you from seeking much needed support.
Don’t forget to call the Parkinson’s UK helpline!
Keep positive Here if you need us.
A warm welcome to the forum and I’m really sorry to learn about your recent diagnosis.
@DT has give you some great advice, our free helpline service is a good source for information and support so do give them a call on 0808 800 0303. We also have a ‘newly diagnosed’ section on our website with a lot of information and tips to help you at this stage with your condition. The page includes a ‘Parkinson’s and you’ introductory guide which you can download and info on the different types of support available to you here- https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons.
I was diagnosed last September aged 55 and I understand how shocking, daunting, and devastating this is.
Ten months on, I’m still a beginner but I can give you a few pointers.
1 Think positively. Progressive and degenerative does n’t mean next week. Living is Progressive and Degenerative, so too is getting hit by a bus or dying of many other illnesses that might come along. So treat it with the contempt and respect it deserves and fight it in your head.
2 Get some exercise. PD warrior, Boxersize, Down the gym, a rowing machine or bike at home.
I now understand that if you can get your heart rate up with exercise it actively combats progression.
This bastard does n’t like you stimulating those little neurons and strengthening your body.
This might be hard and painful at first but keep going and keep taking your meds. It will greatly improve your quality of life both physically and mentally.
3 Join a working age group. I have met some inspirational people in these groups who have achieved wonderful things whilst living with PD, and are living proof that it is not a death sentence.
Hi Julie
I was 48 when diagnosed 3 years ago. I too was in shock having convinced myself the tremor was due a trapped nerve or something.
There was no support available. I found the internet and forums like this one and healthunlocked were my only way to find out about PD. I stayed away from meds for the first year. Started azilect the second and this last year have been taking sinemet. I’m currently taking 100mg 3 times a day but feel this will need to be increased soon. I was promised a PD nurse and 6 monthly consultation with my neurologist but all I’ve had is two appointments and no nurse.
On the positive I’m still driving, working, cycling, hiking and living a fairly normal life. PD is with me all the time but I’m determined to stay positive. Some days are worse than others.
A few simple things will help you adapt to your new life. Tell people that matter. My tremor is made worse when it happens and I’m trying to hide it from someone who doesn’t know. Eat healthy staying away from sugar if possible. Exercise is thought to slow progression so cycle,run, walk. I’m thinking of starting weights too as I’ve read bigger muscles tremor less.
Enjoy life now. You’ll start to feel better. I take a few supplements too. NAC, Alpha lipoic acid, acytil l carnatine, omega 3, vitamin C. Look them up but the supplement market is huge so reach anything before starting it, you could spend a lot of money.
You aren’t alone. Best wishes. John
Hi Julie
I was diagnosed on June 6th at age 45. Ironic as it’s D day, but for me, will forever be Diagnosis day.
It’s been incredibly challenging accepting that this is the new norm and grieving for the life I feel I have lost.
Everything is geared up for people who are retired with Parkinson’s not for people of working age.
I’ve spent the past 10 days in a neurology ward in hospital, as for me the non-motor skills are more of a problem than the a-typical Parkinson’s ones. Mainly pain.
I’m already having to inject with apomorphine in addition to my oral medication.
However my consultant, Parkinson nurses, my GP and Parkinson’s UK have been amazing. I’ve found that you have to shout very loudly to get the help you need as most healthcare professionals just don’t meet people our age who have this. I’m now having speech therapy, physio, occupational health and I’ve seen a neuropsychologist, etc.
I’m determined to kick this disease in the ass; however everyday is a struggle.
My long term aim is to set up a local group for people with life changing diagnosis not just Parkinson’s for working age people. To help provide financial advice, exercise programmes, holistic therapies etc and all round general support. No one is going to do it for me so I’m doing it myself. At least this way I can make a positive contribution and feel more in control.
Secondly I can’t believe Parkinson’s medications are not exempt from prescription charges when diabetes type 2 is, which is predominantly a lifestyle disease. So I’m going to start a petition to make them exempt.
Watch this space…
Here if you need us.