I’m 61 and saw the neurologist in December. He diagnosed Parkinsons. It seemed quite clear. I had an right hand tremour (when i hold an object), slowed movements, no arm swing, small handwriting, shuffling gait etc. He recommended Co-Careldopa and a scan to make sure. I’m on the medication and it appears to be helping a bit. I’m waiting for the hospital appt and the scan. My symptoms don’t seem to be affecting my life too much at the moment but I have no idea what happens from now on, how the symptoms progress or how long it will be before I have to make big life changes.
Good evening Mark … I am 70 & was diagnosed with Atypical Parkinson’s in June 2023 following a positive [Abnormal] Datscan. I also had a Brain MRI scan which was normal [this is to rule out other nasties]. I was put on 2 other Parkinson’s drugs which did not work before being put on Co-careldopa which has helped. I was started on
1 pill a day & am now on 2 pills 3 times a day. I have just been put on 1 pill of Rasagiline a day in addition.
My problems are gait freezing & I have a resting tremor. The medication has [probably] caused insomnia, bad dream & RLS. This is treated by more medication. I also have fatigue.
If you are diagnosed with Parkinson’s you will need to tell the DVLA [by law]. As long as you are fit to drive you will be given a 3 year medical driving licence like I have been.
There is no cure for Parkinson’s & there are a number of different types of Parkinson’s. We all have slightly different symptoms & react differently to drugs. You are treated on a trial & error basis.
I have probably had Parkinson’s for about 7 years. Things happen really slowly. Medication is all there is in the early days.
Eat sensibly, don’t drink / cut it way down & exercise.
By the way a Datscan does not 100% prove Parkinson’s. The best test there is though.
A positive datscan you are given Parkinson’s medication & a negative datscan you are given Parkinson’s medication. If the medication helps your Parkinson’s symptoms that is a sign that you have Parkinson’s.
Any questions do ask.
Best wishes
Steve2
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Thanks Steve, I have been trying to keep up my exercise and I think it does help. I’ve informed DVLA and my insurer and I seemt o be OK to drive so far. I’ll see what happens at the next appointment.
Good morning Mark … You ask about the future & you are 100% right in thinking about how Parkinson’s MIGHT affect you. I am 70, single & live alone. I am slim & don’t drink or smoke.
I was playing International Over 60’s field hockey 7 years ago. Then I stopped & played golf maybe 5 times a week, then I had to give up golf completely due to my Parkinson’s symptoms two years ago. Now I play Indoor bowls. Three years ago I could walk 10 miles a day, now I can hardly walk at all & I use a blue disabled badge & I have to walk with a stick.
Some years ago I sold my large house & moved into a 1 bed ground floor flat 3 years ago. In hindsight best thing I ever did. Now I would really struggle to walk up or down stairs.
The other thing I have done is join Benenden Health Insurance. This gives me free access to consultants if there is an unreasonable delay in seeing an NHS equivalent.
That costs be £15.50p a month. I have seen a neurologist privately that would have cost me £245. You have to be a member for 6 months before you can use their services. They cover existing conditions. Worth looking at. Where I live it is difficult to get an appointment with a Neurologist.
Best wishes
Steve2
Also I would now find it impossible to organise a house move.
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Hi MarkC
Sorry to hear about your diagnosis. I’m new to this, was diagnosed in November - unfortunately PD seems to affect people very differently- some very slowly with limited impact - some fast with severe impact and a big mixture in between.
Have / am finding speaking to people that have been through it, is really useful.
Thanks
HI markc, we can see members of the community have already reached out with their advice and support. Please know we are here for you, and if you would like help and support you can also reach out to our helpline, we have a Parkinson’s nurse who may be able to offer you some more advice and: 0808 800 0303.
Best wishes
Freya
Parkinson’s UK Moderation Team
Hello Mark,
Steve has given you sound advice.
I would emphasise the positive affect that regular intense exercise can have in mitigating your symptoms. Please note the use of the word ‘intense’.
If possible you should join a gym and attend regularly.
I go to my local gym 3 times a week and try to achieve 50 minutes of intense activity per session, consisting of sessions on the treadmill, rowing machine and exercise bike.
I don’t run on the treadmill as my knees won’t handle that, so a fast walk suffices.
In addition you could try the various equipment that offers arm exercises such as the ‘chest press’ (google images can show you that).
The main thing is to as much as you can within your limits.
Graham
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