Totally bamboozled with PD drug treatment!

I saw my GP last week and she was surprised to find the drugs the Neurologist has now prescribed isn’t on the list and has now had to write to the neurologist to ask him just what I am supposed to have !!!

You need a new neurologist! I won’t repeat what I’ve written many times before to others but we switched to a neurologist who specialises in movement disorders at a large tertiary centre 25 miles away.

Hi @Eve1,

I’m really sorry to hear this, if you need more support, do give us a call.

Best wishes,

Yes I do - but there are only two and both have terrible reputations - have been told to ask around my PD group to see who they see - out of 4 I asked 2 would love to change but there is no one else - the other 2 - 1 goes to Nottingham and one to Liverpool - can’t say where I live but it is somewhere in the middle and neither location is viable. By the way both these neurologists also have a private practice wonder if the treat the paying patients the same as us poor NHS patients hmmmmmmm.

Hi. I have just been diagnosed (2 weeks ago) at 45 and feeling a little overwhelmed with direction of treatment, whilst trying to remain calm and positive for the sake of my family! The thought us I have had symptoms for 7 years but been managing them. The rigidity in my left hand has got worse over the last year though and tremor started. I usually go down an alternative route - exercise, yoga, massage, but the neurologist prescribed Ropinpirole at the diagnosis appointment. I read side effects and feel nervous about them. Interested in learning more about mucuna bean, have people found this successful? And the dietary alternatives. Basically confused about drugs or not. PD nurse I spoke to on phone respectful but think medical people recommend drug therapy… I guess I don’t know yet as too new whether delaying drugs worsens things longer term?

Hi & welcome. I am no expert on drug treatment but my understanding is that there are no hard & fast rules about when to start drug treatment & specialists seem to vary in their approach - not surprising really as people with PD vary so much in how the condition affects them. My husband was diagnosed 14 months ago after a positive DaTscan but isn’t on any medication yet - he had his last consultant appointment a few days ago and we agreed that the right approach for my husband at the moment was simply to continue keeping active physically & mentally. Our next appt is in 6 months.

Exercise, yoga, tai chi, good nutrition etc are proven to help whether one is on medication or not so they are not mutually exclusive. You may be able to find specialist groups near you but they aren’t essential. It’s likely to take a while to work out what’s best for you but you will always be the expert on your condition so do what feels right for you, in tandem with listening to advice from your health professionals.

Best wishes.

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Thanks for your post. It is good to have support to do what feels right, at first it felt like medication the only option but I think taking some time whilst I can manage the physical important. At the moment it feels a bit like a choice between which I want to utilise most, my body or mind? Maybe that’s just my current perspective, or have others felt this?

Hi, I too am disappointed by the level of care from my neurologist and my Parkinson’s nurse. I was advised to try the apomorphine pump and pen, sadly I have an allergic reaction to both. This was reported to the neurologist and the PD nurse. Last time I spoke to the pd nurse almost 12 weeks ago now she told me not to worry, they wouldn’t leave me in a back hole. That is exactly what they have done. I had no quality of life and didn’t want to exist like this. As a last resort I played around with my medications and I feel so much better. I have to get a change in my prescription from the neurologist. I have had no response to phone calls or a letter I wrote. I feel like I will have to get for the treatment that helps me feel like I am able to live my life. I will try them again. If no response I will have to make an official complaint. It’s sad, we should feel supported by the team of specialist’s, not like they don’t give a dam.

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Hi @Juju,

I’m really sorry to hear about your bad experience with the apomorphine pump and the issues you’ve faced with your neurologist. If you need more support on this, particularly if you’re thinking of making a complaint, please feel free to speak to our advisers via our helpline on 0808 800 0303.

Best wishes,

I was prescribed Madopar, tried it, felt horrible and researched Mucuna Pruriens instead. I take it powder form in water which gives me very good control of it. No apparent side effects (Sorry. I mean ‘medically induced alternative illnesses’). A dose lasts for 12 hours - not 3. I use Zandopa which I buy direct from India at bulk purchase rates. I tried using the pill form - more convenient but not so effective. Good luck! JCPB