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.
I’m really sorry to hear this, if you need more support, do give us a call.
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.
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.
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.
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
This is really interesting to me. How do you know dose to take? Did you read it, experiment or get advice from Auverdic doctor (you mentioned India?). I am going to try to manage symptoms for now but when meds needed this is a route I would like to take I think. I haven’t read how long this can last for (as a treatment over years) or if it continues as long as you take? Any ideas? Thank you for sharing and posting information on this. Please feel free to direct me to relevant websites or places to look rather than pestering you!!
Thanks for info. Do you know dosage of mucuna? And do you know if the beans contains carbidopa as part of it’s chemical composition? Also would you try other med before this or wait until she needs Ldopa? Might be asking tricky questions sorry!!
I have a reading list for you that should deal with all your questions and more. Mucuna versus Parkinson, Treatment with natural ldopa by Dr. Rafael Gonzalez. (his English is not brilliant but he is convincing and informative).ISBN 9781500938116.
Natural therapies for Parkinson’s Disease by Dr. Laurie K Mischley is a real eye-opener that puts Mucuna and many other PD “things” into perspective.She is a practicing doctor who has gone into the science in detail. She has written research papers and has an extensive pd practice. ISBN: 978-1-60381-043-2.
Stop thinking in terms of “managing symptoms” and turn your thoughts towards inhibiting further spread of the disease within your system.
None of us can be sure why we got this vile disease but it is possible to address it as probably being an auto-immune problem and help the body to rebuild its immune system to impede further development. Don’t think of Mucuna in terms of “dosage”. It’s a naturally occurring “bean” that has been used against tremor in India for thousands of years. There is no money to be made from it by the pharma industry so you won’t find much about it from them in terms of dosage.
“Suck-it-&-see” is the best way forward.Try a small amount (5gm?) of pure powder in water to start with and if that doesn’t do much add more. Personally I am currently taking 20gm early in the day and need nothing more until the evening when I take a 10gm top-up 30 mins before my evening meal.The rule about not taking it within an hour of a heavy protein content applies to mucuna in the same way as it applies to other ldopa treatments. I have encountered no “side effects”. It doesn’t stop all my tremor except when I sit down and relax a while; then it disappears completely. It works well with exercise.
Note that you can buy mucuna from several internet UK sources but beware; the pure powder has a vile taste. Zandopa has a dash of added sweetener. Taking pill versions avoids the taste problem but the pills don’t seem to work effectively for me. Enjoy. JCPB
Hi Reah. I tried to contact the Parkinson’s nurse via the specialist nurse appointment line. I was given an appointment for the Friday afternoon 1pm to 4pm on each of the two occasions. I did not receive a call on the first occasion and when it looked like the same thing was going to happen again my husband called and the appointment co coordinator emailed her. She responded to the email telling me her clinic is on Fri am and I had been put in the diary in the afternoon. She clearly knew I had been trying to get help but ignored it. When I told her I had tried to contact the specialist also both through email and a letter, she told me they have to have their little holidays. I am unsure about complaining in case I get an even worse service.
Hi JCPB, Can you tell me where you buy this from and what the brand name is. I’m struggling to find it. I’m a 63 y/old newly dx with PD and am taking Sinemat and struggling to see the benefit (which doesn’t mean that there isn’t one)
That’s a real shame and I’m sure a huge disappointment to you. I understand your fears about making a complaint, but the service that you’ve received really isn’t a positive reflection on medical professionals so if you would like to make a complaint, then our helpline service is here for you.
The information you’ve shared on Macuna is really insight and as I can see,very useful to other members. The only thing I would add is that people should seek medical advice before changing their medication or the way they manage their Parkinson’s.
We have written a blog looking at the research that has been done into natural forms of levodopa, including Mucuna pruriens. This article highlights that natural products have potential, but there is a lack of evidence that natural forms of levodopa are better than conventional medications. This is because conventional drugs that are available combine levodopa with other compounds that make them more effective at stabilising the levels of dopamine and reducing the side effects. More research is needed to see how natural products could be exploited in the management of Parkinson’s.
Just an FYI…