Apologies I seem to have posted before finishing my reply.
Like you I am now really suffering a reduction in quality of life. This last year has seen a particular decline along with a rise in anxiety. I spent Christmas worrying what plans I should put in place for if/when things get too bad to work and care for myself. Not a pleasant thought I know but whereas there is information about progression with medication i.e. Different meds and strengths, combining meds and when they are no longer viable things like DBS etc. There appears no real advice on how to manage symptoms when not on meds, how things will progress etc. I fear I will become so rigid and immobile I may be locked in my own body. Another even worse thought.
On a positive note I hear, unofficially, that a Dutch neurologist is trying to start a study of alternative therapies including those few people around the world who claim to have reversed symptoms using diet, amino acid therapy, fast walking, biking, Qigong etc. Let’s hope they find something that all of us PD sufferers can use to reverse our symptoms.
Wishing you all the best for your continued journey
Hi Fizzy, I chose to take Ropinerole when I was diagnosed (didn’t started taking any meds the first 12 months though, then after 12months I needed some sort of medication) the Ropinirole suited me really well and I have had no problems with it at all, I got up to taking 18mg without problems. You are the first person I have come across who has not had any reaction to this drug! I am still on it but now but last year Sinimet was added because they did not want to increase the Ropinirole, been worse since!
Hi there - how do yo know that it is the rpinerole that is worse? It might be the Sinemet that you are reacting to? I couldnt tolerate Sinemet when I was prescribed It gave me pain and cramping in my hands and feet. Then was put on Madopar which made me extremelly nauseous so it appears that I don’t find levdelopa easy to take - maybe the same for you?
Could be the levadopa because I get a lot of pain and the cramping in my hands and feet, knees, ankles, calf muscles, going to mention to the nurse when I speak to her in May.
Reason they put me on Sinimet was my legs started to feel heavy again but as I said they didn’t want to increase Ropinirole XL Slow Release from 18mg (even though I was ok on it) I think the limit you could go up to used to be 25mg, so the Neuro decided to put me on Simimet Plus (6 a day) 25mg/100mg along side the Ropinirole (wish they had just increased the Ropinirole ) I also have at night Rasagaline (Azilect) 1mg & half Sinimet CR 25mg/100mg.
Thank you for getting back to me. I’m sorry to hear your symptoms are worse. There seems to be little or no support for those wanting alternatives to medication. My own consultant has stated that I should get in contact when I want help (meds), no alternatives offered. I am still researching diet and eating lots of fresh veg and drinking lots of water. I am also doing Tai Chi which seems to help with my back pain and cramps. I do PD warrior exercises and a lot of walking. Unfortunately, work commitments has reduced the amount of time I can spend doing this, which is no help. I have started to use a body massager on my back, arm and hand at night and first thing in the morning, when I use it I seem to have a better nights sleep, no pain. When I don’t use it, I get back, neck and leg pains and little sleep. Don’t know if any of this may help you.
Last week, I decided to give in and contacted my GP about meds, however as it was 2 years ago the consultant recommended them and now the GP has to get confirmation from my consultant. The consultant hasn’t got back to them yet. I now have a consultants appointment for late April. I will see how I get on.
I hope you find something that works for you and wish you the very best.
Dazed_and_Confused said “I am keen to hear from anyone who is having success managing their symptoms using: Exercise, Diet (such as grain free), Supplements such as Vitamins & Minerals, Amino Acid Therapy, Meditation & Prayer etc.”
My sibling, when diagnosed with Alzheimer’s found the work US Neurologist Dr Dale Bredesen. He is getting very good results reversing Alzheimer’s using a multi-disciplinary protocol, all based on solid, peer-reviewed research.
At a seminar in London in 2019, Dr Bredesen said there’s a doctor in Germany who is getting good results using his protocol with people diagnosed with Parkinson’s Disease.
If I am ever diagnosed with PD, Alzheimer’s, dementia, MS or any other long term neurological disorder, I will adopt his protocol. Look on Amazon for his readable book if you want to know more, and how to adopt the protocol.
Hi I was just interested in your last sentence about no longer prescribing Ropinorole as I have just been described this.
Only a week in so at 2mg. It has made me feel nauseas but I’m sticking with it.
I also take Madapar 3 times a day with a slow release at bed time but I find this stops working just before the next dose is due so the ropinorole should help
Hi there - I should have qualified my comment by saying that it is not usually the first drug prescribed. When I was diagnosed 8 years ago the first prescriptions were usually Sinemet. The NHS were only just becoming aware of the side effects of ropinerole and I believe there had been a few court cases around gambling debts which is why you should have been warned about possible side effects. I have had no problem with my XL slow release version and i hope that is the case for you too.
Thanks for taking time to answer the post and for the suggestion. Sounds interesting so I will certainly take a look.
Hi Sheffy - I find I have difficulty taking Levedopa. Sinemet woke me with clawed hands and feet which I had to unfurl before I could move them - very painful. Tried Madopar but that caused nausea and sickness so left it a year but tremor is now so much worse that I am willing to try Madopar again with some anti-sickness to see if that helps. In the meantime I have tried Rasagaline for 5 months but that didn’t do anything for the tremor but made me feel exhausted.
Hi Fizzy - I used to have a tremor but the Ropinirole took that away, its strange how the medication works for one and not for all. As you say also about the side effects of the gambling and so forth with Ropinirole XL slow release I had no problems taking this at all, in fact it was the best one I have been prescribed, but mixed with Sinimet (Carbidopa & Levidopa) they don’t mix well, I get a lot of cramping since this was added with the Ropinirole.
I’ve just joined this discussion on Roprinirolle. I was prescribes this at the beginning of my diagnosis but the tablet make me sick. I was then put on to patches and have found them to be great over the years. As symptoms got worse it was slowly increased. I 'm now on 12mg per day (2 x 6mg patches) and find them invaluable in getting my legs moving. Due to see my consultant next month when I hope she will suggest a slight increase.
Hello Cathiesmall, thank you for your input, as I say this Ropinirole isn’t for everyone.
Can you enlighten me on what medication is contained in the patches, they would be easier to handle than all the different pills on offer, it would be interesting to know, also do they leave red parts on your skin when they have been discharged into your body - thank you sheffy
Sorry to take so long to reply - didn’t notice your reply- must have been having an extended ‘on’ spell
The patches contain Rotogine which I believe are good for movement. They are easier to use - you only put on first thing and then forget about them. They don’t leave red arches on your skin tho sometimes they can be in comfortable it-the morning before washing,