4 Days after part Diagnosis

Hi there at 62 I appear to have joined the club .
My diagnosis is Parkinsonian symptoms so far, and on a list for a DAT scan within 12 weeks. My grandfather had PD so I was faintly aware of some of the Symptoms and googled parkinson’s uk 3 months back . Finally went to see my GP then Neurologist 3 ever so long weeks later ( i now appreciate this was much quicker than many others have had to wait.
Ok so where am I now : Off form for 6 months then noticed left arm not swinging , Spooky stare in face , developed a bit of a shuffel , sense of smell reduced . Left hand side generally slowing down especially my gait.
I am a keen runner and my gait is gradually degenerating . No way do I intend to stop running /racing which appears to also be good advise
So far hardly any tremors but I do feel like I am about to start shaking . .

Now the questions: My Consultant said I could start on meds if and when I wanted. Are there any benefits / drawbacks in delaying ?
Not had a letter back from him yet summing up his diagnosis.
My left side degeneration seems to be speeding up rather alarmingly . Is this normal in the pre meds stage? (I could be me just being hyper sensitive.)
Telling other people . Plucking up the courage to do so and also how this may effect my work . I am a self employed boar repairer (who was) looking at retiring in 3 years . I can’t really afford to stop yet and can’t afford to loose clients. Apart from fatigue I can still work ok. If I do start on taking meds I understand that it may take time to discover what works . Roughly how long could this take and how rocky is that inevitable first path .
Thats all for now but it won’t be the last post .
ps mood ok for now but I am probably in denial.

Welcome to the club!
I wasn’t in any rush to start medication but after I did, I think I should have started earlier.
My main symptom is a tremor but I also have the shuffle with my left side dragging.
When I went on Azilect, it didn’t help the tremor but there was a marked improvement in my walking. No more shuffle or foot dragging.
6 months later I started on a low dose of Sinemet. This helped the tremor a bit but the big change was in my dexterity. I can now type again. My left hand was responding slower than my right and it caused all sorts of difficulty with typing.
After I had been on Sinemet for a couple of weeks, my neurologist tested me and could not find any of the usual PD symptoms apart from the tremor. We were both happy.
When I upped the dose of Sinemet to try and get rid of the tremor, I started getting bad nausea so I have gone back to the small dose for a while.

So, if you are coping well without medication, that is OK but you might/should find things easier when you start meds. It can take a while to get the right medication at the right dose.

We are all different but I am glad I have started taking medication.

Best of luck,

Had a MRI scan and now booked for a DAT scan next week. Hoping this will clarify things as been feeling in limbo.
Defiantly suffering from mood swings but getting back into fell running sorts my head. Running really helps but initially found arm swing and dysfunctional gait frustrating . Been worried about balance and tripping issues and have slowed down considerably on rough down hill ground. Having a go at PD warrior exercises which help . Fell running helps as it combines physical effort with high speed mental effort assessing rough ground ahead. Hopefully some neuro plasticity advantage.
Anyone know of any PD focused phisiotherapsts in the Torbay area?

Hi @Boathound,

Welcome back and yes, hopefully you’ll get some clarity following your DAT scan. It’s good that you’re remaining active as exercise helps you to manage your symptoms; given that you were recently diagnosed, I think you’d find the ‘newly diagnosed’ section on our website very helpful. You can find this section here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons. There’s also a search tool on this section where you can search for complementary therapies in your area, I’ve copied and pasted a direct link to this so you don’t have to scroll for it - https://localsupport.parkinsons.org.uk/?location=&op=Search&_ga=2.251157125.2074970011.1565252997-650926728.1511215693.

If you have any questions regarding your diagnosis or DAT scan appointment, you can always call our confidential helpline and speak to one of our friendly advisers. Feel free to give us a call on 0808 800 0303.

Best wishes,
Forum Community Manager


The weeks after diagnosis are extremely difficult, with so many things going round in your mind, You are probably still in shock !

I was diagnosed as 41, with early onset Parkinson’s after two year of trying to find out what was wrong with me.

Parkinson’s generally affects one side of your body first. By the time of diagnosis I could write as my Parkinson’s as in my left side,I had virtually no movement in my left arm,no arm swing l not sleeping and not in a good place.

I started the medication straightaway and within the first month I could see a visible difference and felt much better. Personally it didn’t cross my mind to wait to start the medication I wanted to get quality of life back as quickly as I could.

The dose of PD medication is not an exact science as there is no test to say how much dopamine you need. Suffice today you will have lost 80% of your dopamine by the time your physical symptoms start to show.

It’s trying to find the sweet spot not enough medication and you will not feel the full benefit. Too much and you can suffer from dyskinesia which causes involuntary movement. Don’t be put off by this as your medication will b very closely monitored.

Exercise and Diet are as important as your medication. I would recommend that you see a physio ( I go privately once a month and it helps enormously) to help with your gait, so that you can continue to run as it will help physically and mentally.

In terms of telling people that is hugely personal. I told close family and friends but waited until I was on medication and had dealt with the psychological aspect of accepting the condition before telling others.

Medication can take up to three months to get the full benefit from it but you will see results before then. I didn’t feel ready for about 3months to tell people I used all sorts of excuse as to why I had problems from frozen shoulder to pulled muscles.

I hope this is helpful and I wish you all the very best for future.

Kind regards,

Claire x