Just to say hi

Here is my story . I was dianosed with pk and that was in 2012 but three years prior to that I went to the doctors to see what was wrong as I had a tremor down my right side he side that there was nothing to worry about . Over a period of time they started to get worse and other things started to happen .

Over roughly a three year period I saw four different doctors . And they all stated that I know nothing as they work with people with the pk condition , but the last doctor said that there was a small operation that would stop the tremours and that involved cutting the nerves that a bit extreme i said and I would like to be referred to a specialist consultant which he did at our local hospital and within twenty minutes I got the horrible news sorry you do have pk .

But can some one explain to me why we have to pay for our medication as our bodies dont produces chemical . And while the people whom are diabetic 2 dont pay foR theres medication i think thats right . After all we are both have serious illness, and we that have pk have to notify the dvla of our plight and Is it a disability or not because some people don't see it as a disability just because there ignorant to the fact . Rest assured i notify everyone that my consultant said but over the last two years after being told I have met a couple of people whom have the pk disease and have not told the dvla either. Rant over.

18 Replies

  • I was dianosed two years ago. I chose not to take medicine. That course will continue if I have anything to say about it.

  • Roy, so happy to hear of another PD person not taking meds. I have been diagnosed 8 months ago with tremor noticed a year or so ago. I hope and pray not to take meds as long as possible. Here is a link to NY Times article,ww.nytimes.com/2014/09/14/opinion/sunday/should-we-all-take-a-bit-of-lithium.html?WT.mc_id=D-NYT-MKTG-MOD-59083-09-27-PH&WT.mc_ev=click&WT.mc_c=${CAMPAIGN_ID}.....what do you think? By the way I am doing well so far but when stressed a small amount of beer or wine take care of tremor. My neuro who is well known in the field also advises against meds for me at this time. Please let me know what you think about lithium which my neuro thinks is bad idea.

  • I do not know about lithium. I could not get the link to work'


    Sad thing is, when the neurologist saw me and diagnosed me he suggested I not go to the internet to read about P. He felt there would be disinformation. He also prescribed Neupro. Well, I did go to the internet and was careful about what I read and did my research. That is when I cried learning what MAY await me. Since then and more research I am a little more confident I will be OK. By my "calculations" I have the tremor dominant form. That as opposed to the more serious Posture Instability Gait Disorder (PIGD) form.

    Some neurologists recommend starting meds right away. One, like yours felt it not harmful to delay. I will delay as long as possible. i.e. Neupro is 100 USD per week / in short time generic version will be available (cheaper) / taking meds and developing side effects then taking meds for the side effects / no meds alter the progression nor cure / meds effective for five or so years then dosage increased or more meds.

  • Hi Roy, I could not get the link to work either. The gist of the article is that there has long been an association between lithium and neuron health and wellbeing. The connection is apparent by correlating suicide rates with the level of lithium in the water of various locations; the more lithium in the water the lower suicide rates and higher mental health. Indian ancient holy places, springs or water sources have been worshipped for those reasons.

    I don't know whether it is adviseable to take micro-levels of lithium for us PD people. There is a study indicating harm as well. But it might be all in the concentrations.

    I'm hoping exercise will keep meds a distance away. I've just celebrated 74th birthday.

    Thanks for response.

  • Exercise is a proven neuroprotector, meaning clinically proven to slow progression.

  • Lithium normally given to people who suffer bi-polar depression. Successfully as well I believe.

  • Lithium normally given to people who suffer bi-polar depression. Successfully as well I believe.

  • Pete, that is given in 100 mg amounts and over. This research talks about micro amounts of lithium, 10 mgs or so have been found to have some effects on depression as measured by the level of suicides in that area...the more micro natural level of lithium in the water the fewer suicides in that population. My neuro said lithium has been studied as neuro protection for PD with negative effects....it actually sped up progression. But at least someone out there is talking cure not just symptom relief.

  • My doc said stay undermedicated as long as possible.

  • Hello Peter, welcome to this group. The diagnosis of Parkinson's is frequently a long drawn out affair but once you have had the news most people find they can begin to move forward and regain some sort of understanding and control over their lives. I hope you find that this site will help with that.

    From your comments about the inconsistencies in the prescription charges I suspect you are in the UK. Beware the wrath of others on this site who are in countries where medications are bought through private insurance and many people have to balance money for daily living against money got meds. It is annoying that the glaring differences seen so unfair but it isn't going to change this side of a recession.

    Have you had much of a chance to read up on Parkinson's? That helped me and my Parkinson's husband a great deal when he was diagnosed, that and finding a local support group so that we could pick up tips from other people who had had a diagnosis for longer than us.

  • Hi Peter. I assume that you mean Parkinson;s disease, which is usually abbreviated as Pd. I live in South Africa, where we have to pay for all medication and all doctors and hospital fees. So I cannot answer your query. How lucky can you be if you don;t have to pay for medication.


  • Are you in the UK? It does seem unfair. Probably has to do with pharmacy company's patents (?) Not sure that's the term. I have Medicare and my co-pay is $10 for sinimet generic. What meds are they prescribing for you?

  • What about LDN?

  • My husband is 78 and has had a diagnosis of PD for over 11 years. He is still not taking Parkinson's meds. His condition is tremor dominant and has progressed over time. This week he started reduced hours at work--down to 6 hours a day vs. 8-10 hours so he can have time to exercise more and get more sleep. These are 2 behaviors that have the greatest impact on his symptoms but have been crowded out by his slowing down the last couple of years. This took a Yoga therapist (who I had brought in to work with him because he was starting to get a bit wobbly) looked him in the eye and told him that he wasn't going to continue to work the way he wanted if he didn't make these important changes.

    He has been taking LDN and while it is hard to say whether it has helped since there has been progression since he started taking it, it's one of those things you don't want to stop. It is not that expensive. The other things that did make a big difference in his energy, humor and resilience is ASEA, a remarkable new supplement of redox signaling molecules. This is worth checking out. There are those on the internet that say it is nothing more than salt water but if you delve into the research and try it you will see that it is real. (http://judithgisser.myasealive.com/) Both my husband and I and many who we have introduced it to see a notable and remarkable benefit in terms of how much better our body functions and deals with stress.

    Overall, he is doing well. Still frustrated by his tremor and other annoyances that come with PD but enjoying life. He is grateful for all the good he has and this I believe is also key no matter what your circumstances.

    Whether you choose to take PD meds or not, the benefits of a healthy lifestyle including exercise, whole vs. processed foods, coconut oil with relatively low carbs and a positive attitude will go a long way to living the good life.

  • Hi.

    I was diagnosed two years ago and have no intention of taking medication. My PD nurses and consultant are supportive and have agreed that I should decide whether to go on medicationor not. Having said that, they are encouring me to look into them in case I do feel the need.

    I have chosen excercise, meditation, singing and lots of fun. I'm finding that as long as I'm kind to my body and listen to it, I'm doing fine. I'm no longer a victim of PD!

  • Hi,

    I also have a tremor down one side (mine's on my right side too). I'd say it was "internal", as nobody else can notice it but me, I can just feel it if that makes sense, and I feel weaker down that side than on my left. I also don't feel so in control of what I do with my right limbs. I know that I have parkinson's even though I haven't been diagnosed, mainly because my mum has it, and I can feel the things that happened to her happening to me. So far the doctors just tell me that these problems, which include tremors, tight muscles and difficulty making expressions, are probably just due to stress..

    I went to see a neurologist several years ago when I first started to get odd muscle spasms, but she did some tests on me and said I seemed fine. All in all it made me feel a bit stupid and like I was a hypochondriac. So as things have progressed I'm less willing to see a neurologist, mainly because of past experience, but also because I really don't want to be given medications.

    I've seen the horrible effects medication has had on my mum over the years. It's impossible to tell which of her symptoms now are due to the disease and which are from the medication. So I'm keen to try to stay off them for as long as possible. Ideally I'd like to be able to live my life without them totally. I'm not sure how practical this is. So I'm really happy to have found this thread, and I'd be grateful for any tips and will be looking out for any more replies.

    Thanks, and good luck to you all!

  • Not informig the DVLA could cost you £1,000 in fines. PD is a notifiable (to the DVLA) illness. I believe the DVLA would regard notification of your PD to them as your responsibility rather than any doctor. I would expect your doctors / consultants to have mentioned this though so seems like a bit of an oversight on their part .

    Telling the DVLA about your condition does not mean that your licence shall be taken away, I know lots of PD people who continue to drive. It seems that other consequential ailments are what stop entitlement of a driving licence. The sort of thing here would be sudden sleep onset or my problem of Diplopia or double vision. Anyway I hope you don't get into difficulties with those nice people at the DVLA.

  • This is a great website to get on positive mood, get easy tips and try to fight parkinson free of drugs.


    Keep an eye on Marty Hinz, Alvin Stein and Thomas Uncini work with amino acids.


    One of many case studies (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3068871/?report=classic)

    If at one point you must go on medication do serious research about mucuna (natural levodopa) before everything. Testimonies of people already on mucuna are really positive.

    There is a new book that covers very well the Mucuna Pruriens with a lot of references.

    "Mucuna versus Parkinson: Treatment with natural levodopa" (M.D. Rafael Gonzalez Maldonado)


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