No Med Thread


#1
Every so often someone pops up and says they have been diagnosed x years and are still not taking meds. I always wonder if these people attribute this to any other ways they have of managing pd. Do they take supplements, do they eat lots of greens, do they see certain practitioners, do they excercise, pray, meditate, are they just being stubborn....
My husband has the blessing of his neuro to stay off meds at the moment as his progression is slow. We are currently [u]both[/u] having a go at the fasting regime mentioned by someone else on the forum and have BOTH noticed an increase in energy after a week.
I know there is a treatments thread but I reckon if there was a no med thread people who are hanging may come forward for more discussions which would be interesting to us hold backers.
I'll copy this into the suggestions thread as well.

#2
Aah well, just a thought:neutral_face:

#3
try

http://www.parkinsons.org.uk/pdsforum/posts.aspx?forum=meet-and-greet&topic=new-to-forum-confused-about-everything&page=1&#hi-sallyanne-there-is-a-tendency-with-neuros-to-h

or search the forum with 'not on meds'

:grin:

#4
Hi Parkwife

I'm now over 2 years since dx, and still refuse meds (though I did spend 6 months on the Cogane trial).
I know there are some on here who have managed 5 years +

current regime

coq10
vit b2
dl-phenylaline
vit b3
curcumin with bioperine
20 cigs a day
green pumpkin seeds

plus a host of pills I've tried/am yet to try

I'm 61 and work full time

Peter

#5
I hate to sound naive but three years ago when i was eventually dx i didn't think i had a choice, i wish i had been more aware. Three years down the line i can't see how its possible to come off the meds (even though im on a low dosage ), any one got any experience of coming off meds? I often wonder how i would be med free!

Chris

#6
If you are naive Big C then so was I - no-one explained to me either the benefits or otherwise of starting medication. I just assumed that, being a Neurologist he knew far better than I.

Its very difficult to know now, a year and a half down the line, what are symptoms and what side effects of meds but, like you, would be very interested to know just how affected I would be without treatment.

#7
Hi am very interested in a no med thread. I am 47 and am one year from DX and on no meds. I have upped my exercise but take no supplements. I do go to an alternative practitioner about every two weeks but actually she has been away a while and I havent noticed any deterioration except sleep. Will be interesting to see if that improves when I see her again.

I plan to try to get on the Cogane trials next year if the current ones show positive results.

I positively try to avoid stress and stressful situations/people as many PWPs report it as contributing to progression.

I find it hard to get my head round the supplements.

I am glad I didnt have a neuro who put me straight onto meds. I did meet a chap at a Young parkinsons get together recently who said that there was an up to date study that indicated that going on meds early was positive as the body didnt have to strain itself so much to function. I do find it hard to know if ive made the right decision but feel comfortable with it at present.

#8
Please realise that severity and level of progression of the disease are very individual and therefore it is not unimaginable that there are people who can cope for years without any or very little medication. They are very lucky to have a mild form of the disease. The decision to start taking the drugs is usually taken when symptoms become unbearable and start to interfere with normal daily activities and/or work. And this "unbearable" is a subjective feeling, so it is usually the patient who indicates the time has come to start medication.

#9
Thanks Krugen and everyone else for answering.

Our(?) neurologist actually put my man on ropinerole but made a jokey comment about it possibly causing gambling and sex addiction which put us both off. When he saw that after 9 months there was only a slight increase in tremor and decrease in energy he said to carry on for another year as the drugs don't usually work so well for tremor anyway and it is often difficult to get them right at first.

It is good to hear from others who are taking that approach and doing OK.

#10
Thank you for that Kate. I was starting to feel guilty about going down the medication route, But if truth be told, after at least 10 years of investigations, being variously diagnosed as having veritigo, Menieres Disease, benign essential tremor and what I perceived to be an implied diagnosis of hypochondria, I was actually quite relieved when my Consultant, on the basis of a DaT scan prescribed something that relieved my symptoms. Of course they have side effects, and if I knew of an effective alternative path I would surely take it.

#11
http://viartis.net/parkinsons.disease/news/080601.htm

1st June 2008 - New research

DOING WITHOUT PARKINSON'S DISEASE DRUGS


Journal of Neurology Neurosurgery and Psychiatry [2008] 79 (6) : 716-718 (Asimakopoulos P, Caslake R, Harris CE, Gordon JC, Taylor KS, Counsell C.) Complete abstract

Although L-dopa is the most widely used form of treating Parkinson's Disease, no substance interferes with a person's capacity to produce their own dopamine than L-dopa. Although dopamine agonists are commonly used to treat Parkinson's Disease by stimulating dopamine receptors, they eventually become counterproductive by making the dopamine receptors progressively less sensitive. Due to the counterproductive after effect of common Parkinson's Disease drugs, the issue of whether to adopt a "wait and watch" strategy or to initiate drug therapy soon after diagnosis in Parkinson's disease has been the subject of debate. People who remained untreated were compared with patients who had been treated for Parkinson's Disease, by assessing their progress after two years. Two common symptom questionaires were used - the Unified Parkinson's Disease Rating Scale (UPDRS)) and self-reported health status (Parkinson's Disease Questionnaire (PDQ-39). There was no significant deterioration in PDQ-39 score in either group. Given the lack of significant deterioration in the PDQ-39 in untreated patients, the author's believe that delaying the start of treatment remains a credible approach

#12
Its a topic dear to my heart at the moment. After 6 years and having seen 6 different neuros (not my choice; Id rather continuity) I'm still on no meds and the latest neuro, like all the others have done before, predicts I'll want to start on them before the year's out. It's not that i'm symptom free but it appears that the symptoms that bother me most are those least likely to respond to pharmaceuticals (eg sleep disturbance, tremor).
I do loads of stuff to maximise my chances of keeping well including good nutrition and physical exercise and my neuros have either been disinterested or willing to let me get on with it if it keeps me feeling positive!
I often wonder if I should start on the meds though. I'd be intersted to know what main benefits people have experienced. My Dad's just come off ropinerole after 2 years because of side effects and he doesnt seem any worse without it! (He's 90)

#13
I like what you say about taking the meds when symptoms become unbearable whatever that means to you. I know there are people who feel the medication has given them their life back and I also know my husband may one day be it that position and in that case we will both be grateful for them.

I am also pleased to hear from you Sallymac that it is possible to stay off them for 6 years and still be OK. Probably that is because you have a slow progressing version but possibly that is the case with my husband too. We will have to see.

It seems that non Pharmaceutical interventions can also make a big difference though as this fasting lark has been a big help to my man in just over a week. Much more energy.

#14
krugen68, thank you for posting the JNNP abstract. I do wonder though about the length of time that the subjects of the study may have had degeneration of dopamine producing cells pre diagnosis, which I understand cannot be clinically determined.?
This must surely influence their response to medication, and will be dependant upon so many factors e.g. how long they "put up" with what they consider to be irritating but managable symptoms, how long it takes to referred to a neurologist/movement disorder specialist, how long for a diagnosis of PD to be made.

As a well respected Journal, I have no doubt that the JNNP took such things into account before publishing an abstract that states that the authors of a 2008 research conclude that delaying the start of medication in people diagnosed with Parkinson's Disease remains a creditable approach.

I am by no means disputing the value of the non med route. I certainly should prefer not to have the side effects of medications. But I do think that there comes a time (which will of course be individual) when we feel that we feel that we have no other choice.

#15
just to show that the evidence is not all one way
http://eprints.ru.ac.za/1714/
'The results also show that LD and SEL have some neuroprotective properties which make these agents useful in the treatment of PD.'
LD is levadopa SEL is selegiline

#16
Thank you for that turnip. I think that I may need to read it again ,a few times. Just now I am feeling rather glad that I am not a rat

#17
When i was first diagnosed the neuro prescribed massage and alcohol!:grin: I did try both but after a few months had to ask for medication as I was very stiff, sore and felt grim. That was Mirapexin which made me feel absolutely awful and gave me very low blood pressure. Came off that slowly and said I didn t want any thing else so went back to no meds plus more exercise, relaxation, water etc. A year later asked to be put on a levadopa drug, given Madopar. After 4 months 50mg x 3 daily now very gradually increasing to 100 mg x 3 daily, not quite there yet but has improved stiffness, soreness, balance and freezing and I have more energy. Hasn t improved anxiety or tremor. Interestingly the neuro said taking Madopar was like 'watering a desert 'which had probably been losing dopamine for years. Best wishes samdog

#18
Hello Samdog,

I am just wondering - did your neuro advise you to drink the alcohol or to rub it in to the stiff/sore affected parts?

#19
.....not quite sure how a study on rats relates to humans :grin:

......not sure many rats have PD in the 1st place either :fearful:

#20
I presume he meant drink the alcohol?! Perhaps he meant massage with alcohol - that would be interesting! samdog