I read on these forums about people who have physio or see a dietician about their version of PD. Do you need to be referred by GP for such advice or are you all paying for extra therapies yourselves. I'm 43 and dx just 2 weeks ago and all my neurologist said was 'you've got Parkinson's' then the session ended, no further advice just told me to check out the internet. Tosser.
I have bad shoulder (causing sleeplessness) and I would love to talk to a dietician but I couldn't afford to pay for such professional appointments.
Also, this may be an old topic but do we have to pay for all our prescriptions? I thought long term illnesses were exempt? Strikes me that this bloody disease is gonna cripple my finances let alone my body!!!
HI Digs 43,
I was diagnosed last year and the neurologist arranged for me to see a Physiotherapist,she actually came to the house,I am considerably older,71 and live in Scotland,can also be referred to a Speech Therapist,and Occupational Therapist,sorry cant help with prescription costs.mine are free.
Not exempt i'm afraid but you can buy a prepayment certificate for
29.10 for three months
104 for a year
makes it much cheaper.
Your Neuro / GP can refer to physio / OT etc which is free
What an unhelpful neurologist! Is there a Parkinson's nurse in your area? The receptionists in Neurology would know I should have thought. Alternatively look on this website for how to contact the Helpline. I think it was the specialist nurse who originally referred me to a physiotherapist. Physiotherapy is available foc on the NHS although you may find you are limited to a set number of sessions. Once I was referred to Physiotherapy, I was given a self-referral form by the physiotherapist on my last visit of the series, which I was told to put in the file and use if and when my condition changed or deteriorated and I felt I needed further treatment of that type. I have no personal experience of advice from a dietician, but I would have thought it would be available if needed in your case.
Regarding paying for medicines, you do not give your age but I suspect you are under 60. If so, at present at any rate you have to pay, although you would save considerably by taking out a "season ticket". Once you are 60, prescriptions become free.
I had a similar diagnosis from my local neurologist. Which made me look for another. There are neurologist that specialize in Parkinsons and there are others that are general neurologists who have a broader range.
I now go to a specialist neurologist and his team, all of whom are focused n Parkinsons and Dystonia, and am extremely pleased with their interest and degree of interest and attention to detail. They work at a teaching hospital and on google have an excellent reputation.
Having said which I still have PD and my systems are not improving. Although I feel my rate of decline is very slow in comparison, but that's the fun of PD - everyone is slightly different, are we taking of the same problem or does PD cover a multitude of different problems
On a day to day level the local neuro will - in general - not be up to speed with the full range of PD symptoms and possibly not the new PD treatment developments nor be in a working environment where he interacts with other PD specialists. My GP for example told me there were 4 others in his practice with PD and that we all had a better understanding of PD than he did. I have found that the PD specialists have a greater understanding of when to start taking drugs and the type and strength of drug to take. They also have a larger pool of PD patients from which to draw experience, so can appreciate the differences between different patents.
As for treatments ask your neuro or GP. What I have had (diagnosed in 2006) has been ;
neuro appointment every 6 months ( I have contacted my neiro directly by e-mail a few times as well)
Physio 6 referrals of about 5 sessions each
Occupational health twice
PD nurse 4 times (but available on the phone whenever there is a need)
2 MRI scans
Speech therapy - Lee Silverman plus refresher sessions
I find my local working age group of Parkinsons a great help as you can discuss other peoples experiences and get a fuller understanding of what is on offer and what is to be expected