Hi! I’ve been lurking on the forum for a bit and have finally plucked up the courage to post!
I’m 59 and was diagnosed last summer and am still getting my head around what I should be doing as I don’t feel I’m getting much support locally. The neurology consultant referred me for a datscan to confirm her diagnosis and then wrote to say that this confirmed that I have PD and that she would arrange for a parkinson’s nurse to contact me but I haven’t heard from anyone since that letter. My main symptoms are tremor in my left leg and hand and some fairly minor problems with movement on that side.
At the moment I don’t feel that any of this is affecting my life much but it would be useful to be given some advice. For instance, I didn’t discover until very recently how important exercise is. Why didn’t someone tell me this straight away?
Just as well you found this forum as there is so much help and support on here as well as the main site and helpline.
I too am recently diagnosed and quickly discovered that you have to be proactive. I found the number for the PD Nurse in Leeds and rang them to make sure I was on their radar and got an appointment within a week. I had to keep chasing when I was waiting for medication and have done the same with physio.
From what I can gather being in this forum not all areas have a NHS Neuro Physio so you might be sent to a general physio which is nowhere near the same. In Leeds there is a Neuro physio but with a long waiting list so I asked puk to recommend a private one which I’ve signed up with. I was told that exercise is very important but adding in the PD specific exercises is even more so. I have been doing 3 different exercise for 3 weeks as well as forced walking and have noticed a big improvement in how I’m able to move my left side but more specifically my fingers work better.
I’ve found lots of information on this website. It seems to be a great resource!
I’m about to go on holiday for 3 weeks but will be more pro-active in chasing referrals when I get back. A Neuro Physio wasn’t mentioned by the consultant but I will ask the parkinson’s nurse when I get to see one. One of my daughter’s friends is a neuro physio specialising in Parkinson’s so I might see if I can arrange to see her privately if necessary, although she’s not local to me.
If you’ve got time try and arrange an appointment now for when you get back, otherwise you could wait a couple of months. I was lucky and got a cancellation otherwise I think the wait to see the nurse was about 4 weeks…
If you can have an appointment with your daughter’sfriend that’s great too…
We’re going to South America - Peru, Bolivia, Argentina and Brazil. It’s been in our minds for a while but the PD diagnosis has focussed our minds on arranging some things sooner rather than later.
Hi Clare,
Unfortunately not all the neurologists are aware/interested or believe that anything other than medication helps the progression. Its through forums and talking to other PWP that we learn tgese things. Enjoy your holiday.
DIvine1 - I think you’re right. When my neurologist asked me if I wanted to see a parkinson’s nurse, she said “Most people just prefer to get on with their lives” as if it would be very demanding of me to ask to see one.
I think it’s shocking how people are treated and what’s available depending on where they live… my neurologist put me in touch with the PD Nurse straight away as they do an assessment and prescribe medication… I’d have been totally lost without the nurse.
Hi there,
I cannot believe he said that! Of course you want to get on with your life! You’re NEW life, of which you know nothing about and need support!! Aaargh!
Hi Clare, So many different experiences out there. I thought waiting a month after diagnosis was bad enough! I’m lucky that we have a retired neurological nurse in our doctor’s practice - but trying to see her when you want is not easy but the receptionist was really helpful on getting me in to see her so she could sort out the medication prescribed by the neurologist.
I rang the Parkinson’s nurse today and it turns out that my consultant never sent the referral at all. Anyway, all good now as I have an appointment for the week after I get back from holiday. Now I need to spend some time writing down all the things that I want to ask!
