This is a question I have been thinking about, whether those who decided to take the option of alternative medication as a route to the conventional medication for their PD, has it been successful for you personally, or have you had to start on the conventional meds? Also what type of parkinsons where you diagnosed with ie., idiopathic parkinsons etc., . I have had PD for nine years and have been on the conventional meds for that amount of time and they have served me well with no side effects (fingers crossed!) I have also contributed to the forum for a number of years. Others with PD also decided to have a clinical dietician to advise them on alternative meds.
Thank you for any replies, I am really curious as to the answers!
I was diagnosed with idiopathic Parkinsons in 2013 and have followed a combination of alternative and conventional medicine based largely on the regime promoted by Lucille Leader. (See her book - Parkinsons Disease The Way Forward.- among others) I was immediately put on rasagiline and sinemet was added about 2yrs ago. Since being diagnosed I have been gluten free and have used various therapies such as Bowen, Kinesiology, Acupuncture, Tai Chi, Movement class for PWP, as well as continuing with dance classes and a walking group to which I already belonged. I feel it has all helped but so much is individual. Going gluten free made me much less bloated and with more research linking Parkinsons with gut/diet I feel it is the right way to go. Recent evidence supporting diabetes drugs for Parkinsons also supports this link. After 6yrs my symptoms are starting to make an impact on tremor, anxiety aand energy levels. It may be my meds need increasing - I see my neurologist next month - 15mth since I last saw him.
I think there is no one approach fits all. Some people may prefer to rely totally on the “experts” whereas I prefer to see if there are other alternatives available. Being retired also means I have time/money to persue this action which others may not have.
Hi Cheng52, I was also DX with idiopathic Parkinsons in 2011. I wasn’t sure if some PWP just relied totally on alternative meds but I see you rely on a combination of both. I refused to indulge in medication the first year but relented when the Parky got the better of me, I also belong to an exercise group and have reflexology on my feet. The way I see it is eventually I believe everyone will depend on the conventional meds at some time or another
I take co-careldopa four times a day. Started out as Sinemet but when i moved house my new doctors wont prescribe it as it is too expensive. I was offered patches to take overnight but declined as Iam so worried about side effects. As long as I can manage without them I will.
You take tableta i havent heard of. I was diagnosed just over a year ago.
I did go to a Warrior class which i really enjoyed but then I had a slipped disc and I have been reluctant to go back.
Hi Margs, PD Warrior is supposed be good for PWP, I’ve never heard of anyone having any injuries from doing these excercises, very unfortunate for you. Perhaps you were trying too hard, it can be exhausting but they do state that you only do enough that you are comfortable with it, and not to overdo it and to go in stages.
My meds got a bit mixed up with each other when I was trying to put them down, I take ones for PD and others for BP and others for TIA (small strokes) I have had. Confusing or what!. Thanks for your input to this, it’s interesting to find out how others are handling their parkinsons. Take care
Just read your post again Margs, the Sinimet I take is 12.5mg/50mg Carbidopa and Levodopa mixed. I have had the experience of having being put on a cheaper medication, but the cheaper version did not help me so was then put onto the original brand. If you have any problems with the cheaper meds you can request that you are prescribed the more expensive brand by saying you are not happy with cheaper brand (in that you cannot function properly with your Parkinsons
My co-careldopa is 25/100 which is, I guess, double the strength of yours. I contacted my Consultant and he said it wouldnt be any different to Sinemet as its only the brand.
What I would like to know Sheffy, do you make sure you dont have any protein around the time you take your tablets? I have read that the medication is not absorbed properly if you eat protein around the same time. I have so far not worried too much but now I’m feeling worse especially in the mornings wondering if I shouldnt eat around the same time as taking my tablets.
I am mixing and matching
I dislike the conventional stuff and I presently take
One Azilect and half a sinemet plus in the morning and the other half sinemet in the afternoon. Plus a 2mg patch.
I also take YTE, vitamin B, CBD oil, ginkgo biloba, manganese and magnesium.
I have a couple of beers and a very large scotch before bed.
I am sleeping better since my doctor prescribed Vesomni at bedtime.
Everybody is different
As Gus said Margs. I should check with your PD Nurse regards your medication, there is a difference with co-careldopa and Sinimet (think your GP has gone for the cheaper version) better to get it checked out.
There is no two PWP who are the same, I can and do eat anything I want to at anytime without any effects with my meds, but it may not be the same with you with the meds you are taking and your bodies reaction. It’s all trial and error with what you do.
Hi Hubby, I chose to go with the conventional because with alternative medication I don’t think you are able to keep a check on the amount of Levadopa etc you are taking in or even if you are taking in anything of the things that are needed in helping toward your Parkinsons. I don’t condone anyone who takes the alternative way, and I am so lucky in the fact that I do not have any side effects. Take care and I hope you take every thing in your stride.
Hi all. Just to add a bit more info on my regime experience.
At one stage about 3-4yrs ago my bladder control was extremely poor. A urologist tried to put me on an anticholinergic drug but I refused take it deciding I could cope with the occasional incidents. These drugs have been linked with memory loss. Since then, my bladder control, while not great, has improved with incidents now extremely rare. The only change to my drug regime during this time has been starting sinemet which was about 18 - 24mths later.
At one stage I looked into Mercuna Pruriens as an alternative to sinemet but decided to stick with sinemet as the levodopa dose should be more accurate.
My latest plan is to trial Symprove priobiotic after reading about a clinical trial for this currently taking place. (I mentioned it to my Parkinsons Nurse who said she knew of 2 others doing the same). Before starting I arranged for a leaky gut test (urine) and intestine test (stool) of which I await the results. I plan to start the Symprove in a couple of weeks and will repeat the tests after the 3mth trial period.
That’s good Margs, but when I have tried other brands of my Ropinirole I have noticed a difference straight away. Hope you do well and your Parkinsons goes on fairly smoothly.
Thanks Sheffy, its good to get different perspectives on how we deal with our PD. I was only diagnosed just over a year ago and always feel heavy limbed, tired and not myself most of the time. Any suggestions are always welcome.
Hi Margs, you may need your meds tweaking a little bit, have a word with your PD nurse about the way you feel. The Sinimet I take is by MSD this is the brand name printed on the box. Can you tell me what is the brand name of your co-careldopa that is printed on your medication box, and is there any thing else printed next to the co-careldopa or on the leaflet inside that mentions anything about the medication being remotely linked to Sinimet, just out of interest? Regarding eating give it a try and eat when you feel like it like I do and see if you feel any better…
Sorry Sheffy only just seen your message. On the box is the name TEVA in the bottom right hand corner. I havnt got the leaflet from inside the box I must have thrown it away.
Margs x
