Hey gang. Ever since I’ve been a Parkie, I’ve noticed how so many members of the community are strongly focused on either reducing or phasing out drugs altogether. I’ve usually supported the ambition but today had it well and truly brought home to me how important Levadopa is in managing the disease. As part of my pre-DBS suitability trial, I had to have no Madopar for 16 hours. The discomfort of life denied Levadopa is hard to describe: I became totally rigid and severe dystonia was expressed in my neck, back, feet and this graduated to eye lids clenching and teeth grinding. I was totally disabled and felt - in front of bright camera lights (it was filmed) - so demeaned and undignified. It struck me that if I had to live like this permanently, I’d commit suicide without doubt. And I also realised how the other stuff like NAC, B1, Melatonin, Coconut Oil et al are such bullshit peripherals compared to this wonderful drug that keeps us fairly sane and mobile. It’s a blessing of the highest order that we live when we do. It dawned on me how tough life must have been many years ago and remains awful for brothers and sisters in poor parts of the world who have no access to Levadopa due to poverty.
I toast this extraordinary drug and thank God that I have access to it 🍷
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jeeves19
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Very well stated. I think a lot of the anti levodopa zealots out there are those who are newly diagnosed. Sure you can get by without for a while, but there will come a day you will need it, and you’ll be happy that it exists.
I was one of those people, LOL. But after being in the hospital a couple weeks ago, I am now on one tablet three times a day. Not walking and having all that disability was an eye opener
I agree meds are helpful and powerful. We are lucky to have it.
As I understand it, if you stop the levodopa that quickly those symptoms you describe surface. If you want to see how you really are you probably should reduce levodopa over weeks or months gradually.
Once you get down to the fact that the current state of PD is such that all you can do is try to improve quality of life through the safest means possible, I think it makes you realize a lot of things, one of which is the importance of levodopa.
For me the idea of needing a drug, any drug, is an anathema. I want to believe I'm in control of my life, not some little pill. Similar to addiction to narcotics; most addicts say they don't like it but need it. Fear of withdrawal pain motivates them to continue. The best paradigm is my need for coffee. I hate needing it but trying to stop means a week of horrific pain and stupor. Then I'm cured and I swear never to touch the stuff ever again. But that vow never lasts.
I know what you mean but you could think that about a lot of supplements or even the food I seem to need horribly... Liver? As you know, Dr Costantini used B1 in addition to the usual levodopa drugs. I found him here when my HwP was first dxd and he's helped us a lot.
My HwP was never on levodopa when he started B1, but it looks like most of Dr C's patients were on it. I never thought of using levodopa as being an addiction tho. Some people need thyroid meds for example. Then, you see some feeling it's best to wean off them. I think they feel like you and want to be off any meds/supplements and see that as the best way.
The latest ‘miracle’ is vit B1. I am interested but I expect it to only counteract some lethargy and tiredness. I read the reviews from disciples who always seem to be looking for the sweet spot which they rarely find. I follow their “I have arrested progression” stories and always note another explanation is just as likely. Nearly all are in the early stages of pd. and expect miracles from the vitamin. I feel perturbed at times when I hear what some people put up with and write about their situation and the misinformed responses they sometimes (often) get encouraging them to avoid medication.
Fear of withdrawal doesn't motivate me kaypeeoh, i just want to live the best life I can now. I dont think it right to align us with drug addicts. We are better compared to diabetics who cant function without insulin. We can’t function without dopamine. One of my friends refused medication until she found herslf in an electric wheel chair. After her first dose of levadopa she was up and away! No wheelchair and Life was worth living again.
All the best for the dbs Jeeves. Hope it does all you hope for.
I agree Hikoi, and feel also that aligning PDers on Levadopa with drug addicts is rather naive and ill informed as to what is needed from what is lacking - Dopamine.
Communities like this skew heavily towards the newly diagnosed (when people that are unfamiliar with the full course of the diseases think they have the answers) and spouses. People with moderately advanced to advanced PD can often not operate a computer (or don't have the energy to) and therefore their voices are not often heard. I think if you took a survey that represented the entire PWP population, you'd find the overwhelming majority are very thankful to have access to the prescription medications that they do.
He sees the Neurologist there. He only takes low meds to which he just had a neupro patch added, as any increase in Madopar, dyskinesia appears. Neuro is trying to help with this and said he s too old for DBS and doesn’t think it’s an option for him.
I’m not against the levodopa but I am against the way hubby was talked into taking a much higher amount than was safe for him. He tried what the doctors and PD specialists advised and it made him so bad he nearly killed himself on several occasions with symptoms similar to what you describe without it. . Now on a much lower level he is doing very well.
There is a sweet spot between too little and too much.
That’s very interesting indeed. The severity of my withdrawal was so stark and brutal that it’s mentally scarred me, I can tell. I was like a chimp in lab being experimented on, tortured, vulnerable and writhing . What did your hubby reach - roughly - as a daily mg of Levadopa and more importantly, how did he manage to find a way back from such levels? I feel like he did, that I need big doses to enable me to do the things that I want: walking the dog, exercising, etc. It sounds very sensible to hear that one shouldn’t take too much but seems to be the dilemma: we want to feel good and at ease, and drugs seem to deliver that, so the desire isn’t sinister but very human and predictable?
he was taking 50/12.5 madopar IR x 3 1/2 per day and we asked for another half as I thought he needed it for the evening. They changed him to 5x extended release madopar which is 100/25 but they said it acts the same as the half strength one in terms of the dose delivered.
He was good for about 3 days then deteriorated to the point he couldn’t get on or off the bed or even go to the toilet without help. He became so constipated and had never ever been constipated before. The last straw was he began to choke as his throat spasmed about 90 minutes after each dose and as the day went on each dose was worse than the last.
At night he wouldn’t sit still but we had to go outside and walk around the park over and over again as he couldn’t keep still and he wouldn’t sleep and didn’t know what was happening and he kept trying to escape to throw himself under a truck on the main road. I had to get deadlocks fitted to the doors to stop him escaping while I was asleep. This went in for a couple of weeks.
In desperation one long weekend when no medical staff were available to talk to I decided to switch him back to the IR madopar and just add the extra small amount I had wanted in the first place and within a couple of days he was back to normal again. Now he takes 5x 50/12.5 mg IR and is feeling very good and has lost all the side effects again.
I’m sure he would suffer side effects if he went off them too. He just didn’t need so much and that was worse than too little.
Gosh - LAJ12345 - I'm shocked to read what you had to deal with. I am SO pleased your husband is back to his normal now. I can only agree with you and what Jeeves was asking - there is certainly a limit.
Jeeves, hi there, JB here. We've spoken before, you are similar age to my husband. Re high doses of meds like LAJ12345 said, here is what my husband is on. His Neuro said some people are on quite a lot more but the difference is my husband started young. He's been on Sinemet 17 years now. Sinemet though not Madopar. So he is taking two types Sinemet 200/50 extended release and Sinemet 100/25 - he is up to 2000mg per day and that is extremely close to his limit. If he adds a 1/2 more for exercise days then he is still ok as he uses it up, but otherwise he starts becoming over medicated and Dyskinesias start in. After being on the drug for so long its not surprising his body is starting to have a kick back against taking more (his Neuro is onto that also and we have been slowly reducing tabs in conjunction with different DBS programs which are 'incredibly' at present holding well. It's absolutely amazing..... it truly is Gold Star.
You're kidding - ha. That's where we normally live. At present we are in Europe. Unfortunately NZ was lacking big time for PD and DBS specialists in particular. None in our area at all where we lived. Luckily we have healthcare for the PD in the U .S.
My husband,now aged75,was diagnosed 4 years ago.Inspite of regular PDWarrier exercises, voice therapy,and an iron will,he has deteriorated quickly,lost 2 stone,and needs help with most daily tasks.Of course we are thankful for sinemet,but conventional meds have one gaping hole,They offer no hope.Our neurologists attitude is go away,and come back when you get worse and we will give you some more.Supplements do at least give a glimmer of the chance of improvement,and I think many of us have benefited from one or other of the alternative therapies out there,the plus being most of them have no serious side effects when taken sensibly compared with the drugs we are prescribed.
I must have spent hundreds and hundreds of ££ on supplements: ginkgo, NAC, Alpha Lipoic Acid. Cod Liver Oil, Acetyl L Carnatine, B1, B complex, Inisitil, Digestive Enzymes and I could name many more. But I can’t honestly say that I’ve had any relief from any of them. But hard to evidence whether they’ve slowed down progression as well to be fair?
There's as much of a chance that they accelerate progression as there is that they slow it. There's no natural law that says 'supplements' can only be good or neutral, and given how little is known about the pathogenesis of the condition (not to mention multiple subtypes, some of which may respond positively to a substance that causes damage in another), i think it's rather adventurous to take things (particularly in high doses) based on what is often no more than mere internet speculation. To each their own, of course .
As far as neurologists go, im happy one to have one that's honest. There is no cure. It will get worse. Just try to enjoy tomorrow and the day after that and beyond that we'll see what happens. I prefer that to someone effectively lying to me by telling me some nonsense about how '[x] will stop progression' or some of the other absolute junk that has been repeated on places like this forum ad nauseum at various times.
Kevwpd, you say : “There is no cure. It will get worse.”
Sorry to hear you say a divisive comment again.
I remind you that this forum is HU Cure Parkinson and the founders “ …Tom Isaacs (above), Sir Richard Nichols, Air Vice Marshal Michael Dicken and Sir David Jones set out to find a cure, focussing on research projects with the potential to slow, stop or reverse the progression of Parkinson's.” Quote from Cure Parkison's
Tom Isaacs was very determined in this and dedicated his life to fundraising with the purpose mentioned here:
"We 're here for the cure!
Everything we do is to move us closer to our goal, of finding new treatments to slow, stop or reverse the progression of Parkinson's. Your donations and your involvement in research will lead to the breakthrough we all want to see.” . Tom Isaacs. link:
If you are convinced of what you write, and it is not the first time you have done it, you are not aligned with the goal of this movement and you should leave this forum since you obviously belong to other groups that believe that a cure is impossible and consequently hopeless.
Our founder Tom has left us and it is up to us members of Cure Parkinson 's to take up the challenge and pursue the goal by following his example and thus give results and hope to PwPs and that 's that.
Like hundreds of thousands of other people, but Tom Isaacs thoughts are clearly expressed in his writings and videos and I don't think that apathy and hopeless acceptance of the disease was Tom's attitude.
Finding a cure for PD is Cure Parkinson's goal , we believe in this possibility.
Hikoi didn't know you were kev communicator, why doesn't he want to?
Toast 🍻 to you as well and also to the upcoming dbs! Not sure that the 'peripherals' are only working for denovo's however. There might be other factors at work and I wish I knew which. Just finished the book 'The promise of Lithium' ... quite interesting though.
I agree 100%! As has already been mentioned, many of us (including me 5 years ago) find this site when we are newly diagnosed and very afraid. All we know about Carbidopa Levodopa is that it can lead to horrible dyskinesia which we witness whenever we see Michael J. Fox... not really thinking about the fact that the medication helped him function quite well for decades. So we jump at anything which anyone claims is beneficial. This disease tends to progress quite slowly and the placebo effect is so strong that many of us (including me) are proud to announce that we have slowed or stopped progression. In some ways, this is helpful. It gives us hope and enhances our attitude. Eventually, however, we realize that we are getting slightly worse, and we're grateful for the drugs which enable us to function.
I will no doubt be on levodopa eventually, but from my personal experience, I have found the three years so far without it useful to learn what triggers and improves my symptoms day to day. Levodopa is a useful palliative treatment but while my symptoms are mild I can test the effects of exercise, relaxation, diet etc. What I like about this forum is that there is a huge wealth of experience and variation between its contributors. Everybody is their own expert.
What great posts you and Stillstandingstill have put here. I like the 'everybody is their own expert'. I find that SO true. Everyone reacts differently to everything. It's all about trying what you feel may help you with or without meds. Levadopa is definitely a palliative therapy in my opinion as well, and a darn good one. I didn't want my husband to go on Levadopa, but 17 years later, and DBS - wow what a difference. He has always been a big exerciser, still is and he is always more level after he has exercised with regards to symptoms.
It's a darn shame that MJ Fox wasn't able to have DBS, and only was able to have a thalamotomy at the time which as I understand was irreversible. He's an amazing guy for sure. I agree also with what you say - progression can be very slow - especially in a YOPDer like my husband and Jeeves. I'm not sure how old you are Jim, or Stillstandingstill. All the best to you both.
Meant to say SS, it's incredible isn't it how much sooner symptoms can start. My husband was saying the other day he remembers his handwriting start to go tiny when he as in his 20's, twitches.... Bizarre disease..
I'm sorry you had to endure that experience. There is always a light at the end of the tunnel and you will have a new start when your DBS is working its magic. Lots of good luck!
As a health practitioner and psychotherapist I have tended to be generally pro alternative, natural advocate. Nevertheless I have also seen at times what difference medication can have in the lives of those diagnosed, not only parkies diagnose but say for instance those affected with psychosis or depression. So there is / might be room also for an informed, combined approach? Every being and circumstances are so varied that it will always be a path of trial, error, hopefully accompanied by curiosity, compassion and patience. To nurture being receptive, to experiment with adjusting the path ( for the diagnosed folks and professionals).
I do feel for those on his own on with any diagnosis, who have no one or are so unwell to advocate for themselves. Or who have no material means to undertake this highly expensive wellness path. So this forum is amazing!!
So thank you Jeeves, Thank You all who share so much, so kindly and inspire us to reflect, to debate and to carry on as best as we can!
Absolutely with you on this . L dopa transformed my life in 3 days. I knew I should have started it atleast 5 years earlier but was in denial and wanted to continue living my high octane work life for a few more years.
The only reason I look at other modalities that may modify this is I developed post dose dyskinesia withn 3 months of stating L dopa but got excellent control of my troubling symptoms (painful lower limb dystonia, stiffness and rigid lower limbs and akathisia).
I have experimented and found a way to do an adjustable regime to reduce my post dose 30 minute surge of dyskinesia for most of the day . My neurologist supports my decision.
My other uncomfortable symptom is profuse face and upper body sweating which I know id physiologically an acetylcholine mediated response as well as histamine release tye of itching. Any bio feed back activity that can calm that (be it yoga/ some type of meditation or light mediated physiological modulation) I am willing to give it a go.
But I am happy to say that I can now manage to live a full life on around 500 mg of total L dopa over 24 hours and another 100 to 150 mg when I am tryng to increase my exercise level (aerobic or resistance training of my lower limbs bring on severe dystonia and rigidity)
I still live a full active life at nearly 62 . I work full time.
thank you for your comment. I’m newly tentatively diagnosed. Neuro examined me last year and said come back in one year which is coming up in August. On no meds, the dopa’s made me very sick so Neuro . I’m not in denial but frightened, tremor in right slightly increased than it was a year ago.
sorry for sending post too soon -haven’t posted here or anywhere before. Neuro said don’t take meds if they made me sick. Not sure what to expect in August but since tremor slightly increased it may be time to start dopas again. Understandably I am scared but trying to stay positive. Thank you for reading my post. Blessings to all.
Hello Mimi I do understand being scared. I am a physician ; earlier in my training years I had prescribed shed loads of Sinemet or Madopar to may older people with Parkinsons.
My denial was not even going to see a doctor. I refused to accept that the fatigue and aches I had was not just old age and overwork. IN 2012 an old acquaintance from my training days who is now a geriatrician and runs a Parkinsons service told me that he thought I had Parkinsons I was so scared I stopped telling anyone that I felt tired. I was scared it would stop me from working. I took great pains to convince an occupational health physician that I had focal dystonia (writers cramp).
I finally went to see a neurologist when I could barely walk and had a severe frozen shoulder that made me totally dependent on my 84 year old mother to look after me.
Pearlette - thank you again for sharing your experience and the ups and downs of your journey. Kudos to you!
I haven’t participated in any chat groups until now.
I was first diagnosed by neuro with ‘suspected mild PD’ in April 2022 due to slight tremor in non dominant hand and prescribed C/L dopas. Meds wreaked havoc. In August 2022 during appt with second neuro, after eval, she said come back in a year (coming up In 7 weeks). 2nd Neuro also suggested stopping dopas which I did and felt better.
The tremor seems slightly more pronounced the last 3 weeks. Nervous about this upcoming follow-up appt but garnered unexpected strength from your posts and what you experienced. Thank you kindly for enabling that! Mimi
hello Pearlette.. hope you are doing well. I wanted to ask you about your experience with medication. I will see my Neuro the end of August (have not seen her in a year). I’m not on any medication yet.and anticipate she will recommend it…I’m fearful with everything I’ve read. Would you be able to share your experience concerning your regimen. Thank you so much. Blessings!
I went to a neurologist when I had practically ground to a halt.
There is also a possible genetic mutation in my family (my paternal cousin) has similar symptoms, same age of onset etc. I have dystonia as my most troublesome symptom. My drug journey has been complicated and my movement disorder specialist is very aware that my symptoms pose a challenge
I would expect that you may be offered
Levodopa (with carbidopa as a carrier into the brain) eg Sinemet or levodopa with another carrier (Madopar)
You may also be offered a dopamine agonist (where the drug attaches to adopamine receptor and tricks it into functioning)
Then you have 2 sets of drugs that sabotage the work of 2 enzyme systems that breakdown dopamine in the body
MAO type B inhibitors (selegeline/rasagilene/and now safinamide)
COMT inhibitors (entacapone/ opicapone)
How you respond has a hit and miss element because there is a whole lot of variation within the individual that no one understands.
But most doctors have a sixth sense that comes from pattern recognition that will guide their own way of prescribing.
My suggestion would be do not be afraid to start levodopa if it is offered and use any positive benefit (energy/better balance etc) to increase your physical exercise levels.
That is what seems to work consistently.
You may want to discuss a DAT scan if relevant. Recently a very well known MDS was telling me how he completely missed a diagnosis in a patient with very subtle signs who is now doing very well on a smidge of Levodopa.
The other thing is do not be afraid of some old fashioned drugs. For some individuals they work best.
Thank you for your post. What a difficult ordeal it must have been to be without the C/l for full 16 hrs! I certainly was a bit resistant to the drugs as i was terrified of being dependant on anything. I live alone and dont have a family so that certainly sober me up quickly ( as soon as mucuna was too weak for me)and went on madopar, together with some supplements. Being in these forums is helping me to explore possibilities like walking, dancing, chi kung and art, to support others and keep some hope. Also the friendships i made here are invaluable...Although im quite early in the disease ( first symptoms 2018) i intend to be put on a list for dbs as being alone any big degree of disability is scary..please keep us posted to let us know how you are doing. Kind regard. Chelo
Hi jeeves, I have my pre dbs assessment in a few weeks. I guess i too will see what no meds will feel like. I am to be off meds while in hospital overnight and will be assessed at 10am the next day.Can you give me an idea of what the assessment involves?
just wrote a weighty response which then vanished after a screen freeze. Cue expletive that rhymes with Clucking Bell!
They test you for memory, cognition , depression and hallucinatory tendencies as these worsen with Dbs.,And they want to assess your response to Levadopa of course. Hence the Levadopa starvation. Then you get a huge dose and they measure your responses. The starvation was probably my worst life experience, and I’ve had a few! You might react less violently. I hope so and wish you well. 😊🧠. Tell me how it goes eh?
Wow well I guess you can see all the depth of feeling when you get 61 responses in a day. I'm not even going to bother reading all that I'm going right to my remark responding to what you had said at the outset.
You're entirely correct to decide for yourself and the value for yourself what works and what doesn't. End of story. Personally, and I know you didn't ask for a personal remark, I happen to believe in better living through chemistry. Everything eventually mediates through chemistry. Everything. Everything is chemistry. Those who don't know that are ignorant. Everybody else must admit that all devolves to the final bottleneck of chemistry, and another word which we use to describe what happens is "mechanism."
Everything. There is no escaping it, period. Everything else is window dressing of one type or another, personal impressions or phrasing of different parts of what is ultimately chemistry, maybe various wisdom to impart, but in the end it's what molecules are acting and what time frame and all that other dos mechanism all those qualifiers everything. If you find some sources and materials and method that ends up working for you, then everything else is worth what you paid for it until it proves out, if it ever proves out or has a chance to, and until then what you decide is the way it shall be, and if you like it fine it's worth liking and if you don't like it then you don't.
Everything else is people fussing in the mirror for their own benefit and should be given appropriate weight.
I have to agree. I take Apo Levocarb and take it every 1.5 hours, I know, not ideal but that works for me and it keeps me virtually symptom free. I was diagnosed at 44 and I am now 58. I took my Neurologist’s advice years ago to start the meds. His philosophy was ”Be the best version of yourself and enjoy life to the fullest, by maintaining your body while it is still in good condition , the better it will be to cope with the inevitable (for now) progression.” I see many of my brothers and sisters who are under medicated or unmedicated struggling needlessly. I know we are all different but it works for me and don’t be afraid to take them.
Good post Jeeves. Ì don't strictly agree but I do understand. Ì don't think there is a right or wrong path. Ì was diagnosed 6 year ago with very minor symptoms and the consultant immediately started pushing sinemet for symptoms that weren't problematic.
I refused for 3 reasons (rightly or wrongly):
1) reduce possibility of dyskinesia after 5-6 years.
2) natural experimentation time without results being clouded by drugs. Ive found tai chi (really just full body stretches and balance exercises) helps aches and pains. Going for walks. Boxing classes (non fighting)...all helps.
I've found ways to a good night sleep and when successful I feel so much better in the morning.
Diet: more than 1 330ml of lager is bad for me. :-(.
I admit though that after 5 years that although I can get through very quiet days with no drugs if I do a class, socialise or something energetic then I take a low dose sinemet.
I can see that as time goes on then dose and frequency will increase. But I hope to control when and what I take by slowly mixing it with my natural medications.
My belief is that each person should find what works for them and what they can live with but that drugs are only a part of the cocktail
You are misinformed (or do not accept the evidence that) withholding levadopa will NOT stop or reduce dyskinesia in 5-6 years. There is not a magical 5 years grace when you start levadopa when you wont get dyskinesia. As has been said many times the research shows it is not time on levadopa but your dopamine cells (or lack of) that determine dyskinesia. Some people get dyskinesia on their first dose. Now 15 years on meds I get a few ticks but I am only very mildly dyskinetic.
I got mild Dyskenesia within a month of first taking it, but I have an akinetic presentation, so I thought that I had repetitive stress injury. When I was diagnosed the neurologist said that I was far and away the most advanced in progression patient he knew of to be just getting diagnosed. Once I started medication; however, my progression has been far slower than he predicted, but dyskinesia can be an embarrassing pain in the but, I had to get off of Rytary, the dyskinesia was debilitating while I was on it. Now I just take Sinemet.
Accepting that it is not the only cause, I'd be grateful if you could point me to the evidence that long term levodopa use is not one of the possible causes of dyskinesia.Why for example does mjfox website post
There are two matters here which always seem mixed together. Of course there is a link between levadopa and dyskinesia and I agree it is a side effect. That is clearly demonstrated by the absence of dyskinesea when you withdraw levadopa.
However my concern is what I consider the erroneous belief that we should under medicate or with hold levadopa for some future gain. Bas Bloem with a colleague addresses this here.
Reflections on Parkinson’s Disease Podcast – EP1: Levodopa Facts and Myths
I think the sub saharan trial is convincing but I think you were not similarly impressed. It concludes: “Hence, the practice to withhold levodopa therapy with the objective of delaying the occurrence of motor complications is not justified”.
Below is a link to an MJ Fox video. I think their written information on dyskinesia is inconsistent with this or it could just depend on how you read it. However it reflects a persistent view of many from the US who post on here who are convinced they should defer meds. Trouble is unless someone intervenes they have trouble giving themselves permission to start meds. I guess it feels like giving up.
I think it's another "it always rains when the pavements are wet" . As far as I am aware the saharan study was the only attempt to distinguish time on levadopa therapy from time with PD. The legend that dyskinesia develops more with the duration of levadopa use is a flip of the coin choice compared with the alternative possibility that it is a function of disease progression
WTP, I agree that dyskinesia, or dystonia in my case, is caused by too much dopamine, not necessarely by levodopa. I came to this conclusion after trying alternative sources of dopamine, trying to avoid the ''levodopa induced dystonia''. Other sources included dopamine agonists and red light therapy wich both caused the terrible dystonia. Even if a few movement disorder specialists diagnosed me with ''classic pd'', I came to believe that my pd is probably not caused by a lack of dopamine but rather from a ''mechanical'' cause (see my post from last year on Cerebral Thoracic Outlet Syndrome). That would explain why any pd med sends me right away in dopamine overdose.
yes but not exclusively. I got dystonia before I was diagnosed so I know that is possible. I think there is off dystonia and on dystonia. It is what I expect my neuro to know. I forget these days.
Dr. Tass also mentioned that some of the users of the "Stanford gloves" experienced Dyskinesia after they had been using the gloves for several weeks using the usual treatment method of 2 hours, twice a day, 7 days a week. Hence, he advised them to reduce the treatment to just a few days in a week combined with a reduction in dosage of meds in order to eliminate the Dyskinesia brought about by the glove treatment. It seems that the Stanford gloves are really able to restore dopamine production among PD patients.
Morning Hikoi Thanks for the more considered response.
You're right I'm not convinced by the African study.1
The study itself admits to 3 limitations:
"First, we used a control Parkinson’s disease population with a different genetic and environmental background"
"Second, the different access to medications between the two populations forced us to add a control subgroup of patients with Parkinson’s disease...and thus complicated the design of study analyses."
"Finally, this study was not designed as a community-based trial and inclusion bias might have occurred"
For me the compensatory measures were not clear; overcomplicated the results and created confusion.
Personally I'd also say that
- the method of retrospectively assessing the African onset date may have lead to different dates to the Italian cohort.
- the Africans were predominantly presenting because they had tremor therefore people such as myself (no current tremor) were not properly represented in the African group.
In my original comment I am
not dismissing sinemet just that on my path, after 5-6 years without(which I don't regret), it currently has a small role to play amongst my other approaches.
Hikoi Looking forward to your conclusive evidence. In the mean time is this likely a reliable source or misinformation ?"Levodopa is the most effective drug for treating Parkinson's disease (PD), but its long-term use is complicated by motor fluctuations and dyskinesia."
It is definitely way better to have Levidopa in its various formulations than not have it, but there are some pretty nasty side effects with all of the Parkinson’s drugs, so usually less is desirable. I think, that people somewhat erroneously believe that less always means less progression or that we’ve rolled back some of the progression. This makes us feel better about how we are doing, which in fact, due to the strong placebo effect, does slow down progression. Parkinson’s currently and into the foreseeable near future is going to be a balancing act or trade off for the best possible life according to each individuals definition. This is where I think that we need a really hands on individual approach because two patients with really similar presentations and progressions may have different ideas about what the best quality of life is and what side effects and severity of side effects are acceptable.
Agree. But I sure like my B complex supplements - I blamed PD for my exhaustion midday, but it was my low b12, levadopa is probably at least partial cause of the low B12 (thanks Dr Okum for alert)!
Hi Jeeves, I totally agree with you.I've had my DBS 3 month ago and still use some sinemet (4 table per day) and nothing more. I am still in adjustments phases
Thank you! We too have spent $$$$ on all kinds of supplements when HWP has had best response from Rytary. Finding the correct dosage is unique to each person. My husband was misdiagnosed for about 18 months. Twice about year apart he went to a Neuro Movement Specialist and was told he did not have PD. So we went to a natropath and we began to treat the symptoms hoping to find the root cause. The supplements may have temporarily helped, but he got worse until I finally took him to a psychiatrist. Thankfully, he diagnosed PD immediately as his father had PD and was misdiagnosed. He said the MS we saw was a lazy doctor. We were able to get a DatScan and PD diagnosed confirmed. Rytary seems to work better than generic C/L, less off periods. 2 MG neupro patch helps with RLS.
Digestive enzymes do help him, he no longer gets very tired after meals. Ginkgo also has improved cognition one of his complaints. I have added sublingual B1, not really sure if it helps, Magnesuium is good for cramping and supplementing with P5P B6 as Rytary depletes it over time. We did try some alternative stuff like Glutathione push weekly, it was $$ helped a little. He takes other supplements for heart, prostate, immunity and fatigue that do seem to help. A good diet and excercise help everyone. Our biggest goal is slowing progression.
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Change of Meds
Levadopa questions
Levadopa not working so well :(
What PwP need is regular rigorous exercise motivations NOT more levadopa
