Hi Nici. Your symptoms are similar to mine (right-sided predominant akinetic rigid Parkinson syndrome). And your approach/caution match’s my own attitude. I was prescribed Madopar which I was persuaded to try reluctantly. It made me feel queasy, and the drug they wanted me to take for this was clearly taking me down the “cocktail party” route to oblivion
. So I did a lot of research and decided on taking Mucuna Pruriens (a naturally occurring Asian bean full of ldopa) which has been used for centuries in India to reduce the effects of tremor without long term medically-induced alternative illnesses (“side effects”). I take it in powder form in water before breakfast and again 12 hours later. You can get in pill form too.
I recommend you read ‘Mucuna versus Parkinson’ by Dr Rafael Maldonado for an analysis. His English isn’t brilliant but the message is clear.
If, like me, your digestive system leaves a lot to be desired (constipation, diarrhoea etc) then you might also like to boost your immune system with the Autoimmune Paleo diet. I have been on it for 6 months now and it has turned my life around.
My research suggests there won’t be cure around for a long time yet. All the current treatments address the symptoms and not the cause. The latest research indicates that a poorly performing gut is a part of the cause - not just a symptom.
Hope this helps!
Cheers JCPB
High Nici Your not the only one to be bamboozeled, From what I can see every one else is too,They put me on Madopar plus Beserazide for a trial period of 2 to 3 months, I can sleep for England, , but I have had most of the side effects at diferent times listed on the paper slip ,So I looked on the net that was a mistake and I found there are at least 4 diferent times you are suposed to take the tablets, Befor a meal,dureing a meal, immediatly after a meal and one hour after depending upon the source, It dosnt fill you with confidence,One thing the doctors seem to agreed upon, KEEP FIT , EAT WELL and avoid the tablets, Shakespear had it right" Eye of newt, toe of frog, you would definatly would not want to try his tablets. Wishing you well,Fat fingerd Pete
After reading all the posts, I have one thought …… What a shame we cannot rely on what the Doctors say……… It all depends on you getting a good neurologist. I thought had ………….
Hi Eve Do not loose confidence in your doctor or the consultant,Parkinsons is such a complex subject,I am gratefull to any profesional who would take the job on, Personaly after about 3 months, I stoped the madopar ,as the side effects were worse than the shaking hand and now a month later most of the side effects are gone.Wishing you well Fat fingered Pete
Thanks for that. I have a bit of a problem to say the least …. I have a drooping eye lid - well on the printed paper that comes in with your meds it says watch out for side affects one being drooping eye lid - brought it up with the doctor and he said nothing to do with PD !! this only came on recently. I have about 6 of the listed side effects but have been told nothing to do with PD. So as you can imagine I am at a loss what to do. Also, no further appointment has been made by the Neurologist for 12 months time - this happened to me before and didn’t see anyone for over 3 years ………… so ………… what do I do
Hi @Eve1,
Having a drooping eyelid is quite common for people with Parkinson’s and there has been discussion on this on the forum before here - Unable to keep eyes open. We also have an eye section on our website that’ll to be helpful to you which you can find here - https://www.parkinsons.org.uk/information-and-support/eye-problems.
It’s a real shame that you’ve head to wait that length of time to see a neurologist and given that you’ve already spoken to your GP about your side effects, I’d recommend that you speak to one of our advisers about this. They’ll be able to offer you more information and support on this so do give us a call on 0808 800 0303.
Best wishes,
Reah
Thank you. I have made an appointment with my GP at the end of the month. I have printed off all you have said and what is on your web pages.
I am a little disappointed at both my Neurologist and Parkinson Nurse - I emailed her nearly 4 weeks ago and have no response. I will wait now until I have spoken to my GP and then, if I haven’t heard anything, will try to contact her via the phone.
Thank you again for your help - you are a lifeline to many of us with PD.
Hi Nici
Interesting response from the Neurological Hospital in Queens Square which I would endorse. I work with a wide range of sufferers in my local branch and have seen some evidence of side effects and over-prescription of drugs. Proceed with caution. In my experience if you can manage without then leave it to your gut instinct to tell you when you need help.
Hi @Eve1,
You’re more than welcome and all the best with your up and coming appointment.
Best wishes,
Reah
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,
Reah
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.
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.
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,
Reah
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!!