Azilect

The neurologist I saw today said that Azilect will slow the PD progression but it won't effect the symptoms. He said it is the senimet that takes care of the symptoms. I was shocked because I haven't heard that in anything that I've read about Azilect.

My other concerns was that Azilect is a seclective MAO inhibitor and I take Zoloft which should not be taken with MAOI's. He said it is perfectly safe, in fact he said I can take Azilect with any over the counter medications also.

If you take Azilect I would be interested to know your thoughts about this.

93 Replies

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  • From what I have seen about half of PD patients say Azilect does something for their symptoms. I am one of those for whom it seems to make no difference, but I take either it or the other MAO-B inhibitor, selegiline, anyway. There is some evidence of a neuroprotective effect, but that evidence is not particularly strong - at best PD patients deteriorate more slowly.

    MAO-B inhibitors are much more selective than the old MAO inhibitors so the food restrictions are relaxed. However, I have not been able to find any indication it ok to use MAO-B inhibitors dextromethophan (cough syrup). Wonder what your doc would have to say about that one.

    OTOH the over the counter supplement NAC (N-acetycysteine) has been shown to /improve/ the DAT scans and symptom scores of PD patients. See: journals.plos.org/plosone/a...

    I take ~600mg 3-4x / day. In natural form NAC is quite acid. That is problematic for me so I neutralize it. Details available if anyone interested.

  • edit: use MAO-B inhibitors with dextromethophan

  • When he said that it is an MAO-B it brought a red flag up in my mind for me because I have seen warnings on Cough medicine and other things like Dramamine and Benadryl but he said the Azilect is fine with all of them.

  • Teresa, Azilect is the only drug that currently raises hope for slowing the progression of PD that has been through phase 3 trials. There are other up-and-coming drugs that are currently in phase 2 and phase 3 trials that offer hope of slowing progression but they are further out on the horizon. Therefore, as azilect, or rasagilene,, is an important medication for those with PD. However, be aware that we are not 100% certain that it can slow progression. The clinical trials showed the 1 mg daily dose of Azilect slowed progression but for some reason at 2 mg it did not. This raised a question as to the neuroprotective value of the drug. I Believe there will be additional trials. I take it and it has improved my symptoms but I am also exercising more. You can easily look up contra indications for the drug. Importantly it seems to have a bad interaction with the cough syrup mentioned by another, as well as certain over-the-counter cold remedies. The food restrictions have been relaxed as another stated but, I would still be aware of all contra indications.

    The primary question that surfaces in my mind is what type of physician are you seeing? Is your physician a movement disorder specialist/neurologist? This is important. Personally, I also feel it is important to get feedback from multiple neurologists that specialize in movement disorders, specifically, Parkinson's, as you navigate this somewhat complex terrain and understand what you were dealing with as you are newly diagnosed. I would also encourage you to seek a second and third opinion of this diagnosis. Parkinson's is frequently misdiagnosed so it is important to see a neurologist that is a movement disorder specialist and understands Parkinsons specifically and to get a second and even a third opinion. A reasonably well trained neurologist that is a movement disorder specialist will certainly understand Azilect. Good luck and look forward to hearing how it goes.

  • I can not find a movement disorder specialist here in Arkansas and I'm not willing to travel. The doctor I go to is a Neurologist and this is my second one. I think he will work out fine.

  • Theresa, I wonder if you are near a larger town?

  • Hi p-oui -- Not to worry. I found that I can the DatScan done in either Dallas Texas or Oklahoma City OK....but I've decided at this point I'm not going to travel for it. The closest big city to me is Little Rock Arkansas and that isn't so very big.

  • Hi I am confused if azilect, or rasagilene, are neuro protective why haven't everyone be offered this drug. I have never be given it. I take sinemet and pramepexole. Would anyone know the answer to this question?

    please.

    Budsey

  • I think this is something you need to ask your doctor Budsey. It's a good question. I would like to know the answer myself.

  • budsey the evidence (as i understand it) on azilect is not conclusive but it is the only drug out there today that has been through Phase III trials and *may* be neuroprotective in terms of slowing progression. There are other drugs in the process of going through clinical trials which would determine whether they are neuroprotective, for instance, Victoza (liraglutide), a drug therapy for type 2 diabetes, is currently being evaluated in an ongoing clinical study to slow or stop the progression of Parkinson’s disease.

  • budsey

    thank you for reply - I have read so many people improve whilst taking this drug and that it is very expensive. I've had PD for 18 months and still don't think my symptoms are controlled as well as they could be. I take sinemet plus 25/100 5 times a day and Pramipexole 0.18 mg 3 tbs 3 X day. This seems rather a lot to me and when Neuro increased sinemet up to 6 tabs day I felt worse and stopped the extra pill. I did mention Azliect to PD nurse and she shock her head as if to say no it's not proven . I can't help wonder if the cost is the cause.

  • I agree and I like it - I am doing well with only Azilect and exercise. Insurance may cover it. Once you make your deductible it should definitely cover so give your insurance company a call. The MJFF website had a recent podcast on medication and I suggest you listen to that as I thought it was so helpful especially for those fairly new or early in their diagnosis (like me). One of the experts stated that if your sinemet is increased and you don't see improvement then reduce your dose. I am not on sinemet and personally have elected to go without sinemet until I need it. In my ideal world I can keep controlling my PD with Azilect and exercise. This combo has made me feel so much better - in fact I feel great - but I feel I can't overstate enough the benefit of exercise. What the Azilect did was give me the energy to get out and exercise and I suspect it is helping keep my symptoms (mainly a tremor) at bay. I don't know your symptoms but you might consider getting a second or third opinion as you are so early in your diagnosis. I say this because I have had 3 opinions with 3 different movement disorder neurologists and each suggested different treatment. The jury is still out on whether azilect is neuroprotective but it is the one med that they believe *may" be neuroprotective. It is expensive but I do get good benefit from it. Let me know how it goes!

  • Budsey check out this thread called "Question to those taking Azilect: How effective has Azilect been for you? Have you found that the effect diminishes over time? " to view a great video Hikoi published

  • from BudseyThank you so much for the info p-oui very useful I will check out Hikoi video and I have actually watched the Michael James Fox Podcast. Guesss I won't be happy until I get to try Azilect as I feel my , balance and anxiety symptoms could be controlled better. Will let you know !

    thank you

  • Budsey, glad to hear, I'd love to hear from you on how it goes. Maybe it will help you exercise as well. Take care -

  • Thanks will do

    budsey

  • Budsey if you try Azilect give it a little time. The first week I felt pretty sick to my stomach and weak. That has totally gone away and now the Sinemet is working better for me because before I was on Azilect I was having symptoms an hour before my next Sinemet was done and now I'm not.

  • thank you for your help - budsey

  • Perhaps they felt you needed stronger meds.

    My neuro told me to try it but it wouldn't help my Symptons which was actually rubbish. It has helped a lot especially with fatigue and rigid leg muscle.

    You should however ask.

    Good luck.

  • I agree Astra7.

  • I will ask thanks for your info - will keep posted

    budsey

  • Park Bear, I am interested as I am thinking of increasing my son's dosage of NAC. Please tell me how the acidness affects you (nausea?, gerd?, etc) and how you neutralize it. Thanks

  • In order to maintain pH balance the body excretes all that acidity, and it is irritating to my urinary tract. What I do is get NAC and calcium hydroxide (also known as pickling lime) in powdered form. I add 24% by weight of lime to the NAC, in a mason jar. If you shake it up a bit it mixes very thoroughly. I then cap it up in 00 size gel caps. Yield is ~650 mg NAC per cap, pH neutral.

    To proceed with this you will need:

    An accurate scale, 10 milligram resolution or better

    00 gel caps

    A "cap m quik" capsule holder - this is a jig for filling 50 size 00 capsules at a time

    pH meter - optional - you can dissolve a bit of the mixture in distilled water to check the pH.

    Everything is available from Amazon at reasonable prices.

  • Something tells me that you have done some pickling in your past. smile

  • Park bear, I posted information about current clinical trials for NAC that are recruiting at Thomas Jefferson in Philadelphia. If you access my earlier posts you will see links and a brief synopsis of the trial and why there is hope around this over-the-counter supplement. However, they have not proven the benefit. In the study the dishes is 600 mg twice a day. However, again some of that is administered via I V and I don't know if that is an important element of the effectiveness of this supplement. I mention all of these facts, which is how I understand them from reading through the study, because when I have taken NAC I suffered from the negative side effects mentioned by the other person, including nausea and sleepiness. If you happen to live near Philadelphia you may want to consider enrolling your son in the trial where he can be monitored. Good luck to you. Let us know how it goes.

  • The study published in Plos One got stat sig improvements on several measures, both objective (DAT scan) and subjective (UPDRS). You can use whatever standard of proof you like, but stat sig on multiple measurements is as good as it gets.

    journals.plos.org/plosone/a...

    Also, you must be thinking of someone else because I do not have a son.

  • My post above should have been addressed to Enjoysalud

  • I'm interested park_bear

  • Look upthread for my answer to enjoysalud posted earlier.

  • I am curious to what you use to "neutralize" the acid from NAC. I recently added NAC back into my husband's protocol and perhaps that is responsible for him seeming to be doing better despite a lot going on in our lives at the moment (positive but interfering with things like getting enough sleep).

  • Look upthread for my answer to enjoysalud posted earlier.

  • Thanks. Should have read further before asking but never know how far the thread will go.

  • Hi I am on nepro patch and slow release sinnemet which a take at night lately been haven night terrors and started to shake again and have sleepless nights so thinking meds started not working I've had parkinsons for 3 years now .

  • Yes you need to up your meds. How much Sinemet you taking?

    Also consider giving NAC a try but that gives more of a long term gradual improvement (hopefully).

  • that drug put me in the hospital -- you couldn't pay me to take it. on the other hand one of my friends swears by it + Rytary. and I disagree with your doc. the list of contraindications with that drug is a mile long and had best be heeded.

  • My Dr. says it's OK with all cold medicine. Just watch your blood pressure. The previous class of MAOI are the problem. Did you look at the azilect website?

  • Haven't looked at the Azilect website yet. I'm one of those people that as soon as I read the side effects I have all of them, so until I have convinced myself that the side effects are tolerable I stay clear of the website and just listen to the doctor.

  • I was actually a spokesperson for TEVA in 2008 when Azilect was fairly new. Yes, it is supposed to slow the progression but it also helps make the dopamine last longer. I can tell if I don't take it with my Sinemet. There are many things that interact w/ Azilect. I think Lexapro is is the only antidepressant that is completely safe. There is some great information at as azilect.com

  • Hi TheresaCurley. Sinemet does nothing to change symptoms, it merely temporarily masks some symptoms. Azilect actually increases the availability of dopamine and as such slowly improves the symptoms, very slightly, but it is going in the right direction.

    I took a similar medication called Eldepryl for 8 years until I was able to stop taking it in 2002. I have not taken any Pd medication since 2002.

  • I think to say sinimet masks the symptoms of PD is very inaccurate. I wouldn't say insulin masks symptoms of diabetes it. Is a treatment not a cure and in similar way ldopa treats symptoms but does not cure.

    Eldypril is also an antidepressant . Azilect is not.

  • Hi Hikoi. I find that people think the medication is doing something positive for them, whereas, it is not. Being free of a symptom like a resting tremor is definitely a relief and as such, is beneficial.

    I am a firm believer that 'masking' is a more honest term for what Pd medication does for the patient. It is not inaccurate!. What does treatment mean?

    I was certainly not aware that Azilect was not doing exactly what Eldepryl does. Is Eldepryl still available in the USA?

  • Well John I don't know where you get the idea it does nothing for us, it helps us replace missing dopamine. Resting tremor is only one thing it can help, there are many other very important symptoms it helps.

    Sinimet did not help you I know but many people on here have told you that it makes a difference to them. I believe them just as I believe it did not help you. As you know it is used as a test to confirm PD.

    Azilect may increase availability of l dopa as does entacopone in a different way.

    If sinimet masks PD symptoms then you must agree that blood pressure meds mask BP symptoms and insulin masks diabetes symptoms.

  • Very well said Hikoi

  • Hi Hikoi. What I am saying is that all the benefits bestowed by Sinemet are short-lived. The Pd continues to get worse. With exercise the Pd symptoms get better. They never disappear because the Pd is continuing to damage the Glial cells so we can never get 100% better.

    As time goes by, in order to get that temporary benefit the patient has to take more and more Sinemet. Eventually, the patient cannot get any benefit and is left in an unenviable position.

    With exercise, the patient continues to get better!

    Which would you rather have?

  • This sounds too simplistic for me to believe. If it was that easy PD would not be the monster it is. I'm glad you have found what works for you John and you have followers that it has worked for also, but I can't climb onto your ban wagon.

  • Hi TheresaCurley. We are all different. None of us has the same symptoms, but everybody with walking problems has been able to walk properly, with the exception of one person, who could not stand on his own two feet, and two others who just could not get the hang of using their conscious brain.

    With medication it has more to do with your reaction to various medications and what you the patient believe. As none of the Pd medications does anything to slow down the progression of Pd, it matters little which one or ones you choose to take. The difference between MAO-b inhibitors and the other types of Pd medication is that the MAO-b inhibtors help you to get more use out of the dopamine you already have in your brain, rather then putting levodopa into your brain, which converts it into dopamine. These medication have serious side effects, which vary from patient to patient.

    My fast walking is something else. That produces something in the brain called GDNF (Glail Derived Neurotrphic Factor). Traslated into English, this means that the glial cells produce their own REPAIR KIT. Glial cells are the cells that are attacked by Pd. When you produce more GDNF you repair those damaged brain cells and your symptoms get better.

    You may not fancy doing fast walking, but if that is the only way you can get better, what are you waiting for. If youy have a problem walking I can show you how to immediately overcome that problem and you can then slowly start doing the walking for as little as 5 minutes, 3 times a week and slowly build it up over a year to one hour, 3 times a week.

    If you prefer to put all your faith in medication, then that is your choice.

    John

  • Hi John

    Can you please send me details of fast walking to help PD. I suffer from a very heavy head when walking which slows me down my legs feel so heavy as well. Already on Sinemet 18months.

    budsey

  • john

    I differ in my understanding of Parkinsons. As yet no other person has come off PD meds long term following your regime.

  • Hi Hikoi. How do you know? It took me eight years to come off my medication. Others are doing the walking and are able to reduce their medication. As they have ot been doing it for very long they will not be ready t come off just yet, but they are going in the right direction and are all feeling a lot better.

  • As I understand you were only on sinimet a short while so the only medication you were on for 8 years was selegiline? I don't know anyone who has successfully used only selegiline to 'mask' symptoms for that long. That is why I differ in my understanding of PD

  • Hi Hikoi. Selegiline does not mask any symptoms, it gives the patient the use of more dopamine, which would otherwise have been disposed of. Whether you believe I was only on selegiline for eight years or not, that is the truth. The fact that I was only on selegiline and I did fast walking could be the key to my improved health!

  • I believe you when you say you were only on selegiline for 8 yrs, I also believe you when you say you got no benefit from using sinimet. That is why I differ in my understanding of What Parkinsons. Is like. Who else has treated PD long term with only selegiline?

  • Hi Hikoi. According to Dr Doidge, when he examined my medical records at my neurologists office he said that my record showed that I reacted favourably to the sinemet and symmetrel. I did not remember that when I wrote my book.

    I was told by John Telford, editor of the SPRING magazine that he knew of only one person who only took an MAO-b inhibitor.

    I don't think that doctors like prescribing MAO-b inhibitors.

  • My doctor prescribed Alizect without hesitation, as if it were the normal course of action in a PD case. I'm doing really good on the Alizect Sinemet combo I'm taking, I feel better each day and am able to do more.

  • Hi TheresaCurley. As long as you are prepared to accept that none of the medication is doing anything to change the progression of Pd then that is fine. Are you not wanting to actually change the progression of your Pd? Don't you want to start feeling really better, not just temporarily free of one or two of the symptoms?

  • John, I am surprised you are still saying you think doctors don't like prescribing an MAO-b. The many posts on here surely prove that is wrong. It has been first line treatment for many years now. It is so mainstream that there wasn't even a stall for Azilect at the WPC as there was in earlier years.

    SPRING magazine closed about 5 years ago as did the organisation.

  • Hi Hikoi. Ilive in South Africa and most of my experience with people using MAO-b inhibitors is here in SA. At the talks I give I don't ask people what medication they take, because I talk about exercise and ways of overcoming Pd symptoms.

  • How did you find the Congress John, you would have seen many people with walking problems there?

    Did you think exercise was advocated? Did you find any thing discussed about reversing PD?

  • Hi Hiloi.

    I would say that over all the conference was very good. But quite frankly it was same old, same old. Medication, medication, medication.

    Yes, they did mention exercise quite often, but that is like telling soemone to go to London, Whereabouts in London? All exercise is not necessarily good for Pd, and not all exercise is capable of reversing the symptoms of Pd.When will the medical profession take exercise for Pd seriously?

  • Interesting. We all notice different things.

    I thought there was a strong message of exercise = medicine as it said in the program and there where lectures on this topic.

    Also there were exercise sessions, at least 3 one hour sessions daily.

    There was the high profile and involvement of Brian Grant including at the opening session with his exercise message, likewise David Levanthal who started Dance for Parkinsons and the Rock Steady Boxing all heavily involved to name only a few.

    There was also the programme dedicated to exercise called Power Thru Parkinson.

    Three people got inaugural awards for distinguished contribution to the Parkinson Communiy and David Levanthal got one for his work with dance exercise.

    I think they did a magnificent job in showing the importance of exercise.

    All exercise is not necessarily good? I don't know what you base that on but exercise as treatment sessions presented the evidence from biological and clinical studies supporting the role of exercise in he treatment of PD and suggested practical ways to integrate it into daily life.

    I noticed hardly any sessions on medications but many on the science of PD and the challenges of living with PD.

    Overall I think exercise was taken very seriously.

  • Hi Hikoi. Were you at the congress? We were unable to go to half the sessions we wanted to attend. My beef is that, even though I mailed the organisers to give a talk on the benefits of fast walking over the previous 18 months, I was unable to get a response to my request. I have to assume that because I claim to reverse symptoms, and I have been able to stop taking any medication, it does not fit into their agenda. We have to move forward and accept that there are ways to reverse Pd symptoms.

  • I don't know any scientist or neurologist who would accept your claim there john. I'm not sure your presentation style fits a conference like that. You would need to show some objective measures of improvement .

  • Hi Hikoi. You don't know how frustrating this all is. I, in good faith, am telling the world at large that I have been able to get better. The world at large will not accept that, I have to prove it in scientific ways, which I don't have. If the Pd world wants to get better, it should at least start the ball rolling by seeing what I am able to do. Show some good faith in return!

  • I believe you. You clearly have no agenda other than helping pwp. I was suprised when my nice neurologist dismissed excerise as it hadn't been proven in a scientific manner.

    I have told my kids they need to cycle to school next term so I can walk to work. Hopefully 20 mins each way will be enough!

    Onwards....

  • Sounds good to me.

    If People were to listen to me and start doing the walking, how much harm would it do them? It would at least do their general health a lot of good.

    If the harm, my critics fear might come about because the patient did not get better, actually happens, would that be worse than the side effects caused by the medication?

    I think my critics have another agenda, which is far more likely than the fear of the walking failing to make their condition better!

    What a complicated world we live in!

  • I guess my problem is that I'm understand you to say that medication is detrimental and it has helped me so much I can't agree. I totally believe exercise helps, but so does the medication.

  • Hi TheresaCurley. I believe that medication is detrimental, not to Pd but to the patient, Why? Because it makes the patient dependent upon the medication, which does nothing to slow down the progression of Pd. The body also adjusts to the medication and in order to get the same benefit from it, the patient needs to take more medication. The patient then reaches the stage where he/she cannot take enough medication to get any benefit at all. Levodopa medication also gives serious side effects, such as dyskinesia, if the patient takes too much. I often see patients with serious dyskinesia and when I have spoken to them about it, they say they are prepared to put up with the severe shakes in order to be able to move at all.

    A member of my first Pd support group refused to take any Pd medication because he said it was a rip-off. he lived longer than any of the other patients, at that time, who took medication. So he proved that we don't have to take medication in order to survive.

    If you do fast walking you should, from experience, need to take less medication. Eventually, you should be able to come off all Pd medication, as I have, after a certain period of time. It is better to be getting better all the time than getting worse!

  • "..after a certain period of time." How many months would one expect to see reduction of the need for meds? How many months should we expect to be med free? Knowing we are all different, on average what would you say?

  • How long is a piece of string? It took me eight years to come off my meds. As I only took one type of medication for those 8 years, there could only be one time to come off. With people I speak to on a regular basis they come down in small amounts like half a tablet a week until, while keeping a record of the effect of the reduction, they feel a negative effect, and they maintain that reduction for that week and then go back that one half if there is no improvement after that week. If that has happened and they acclimatized to that last half pill reduction then they stay at that level for some time, while doing the walking. Then they try another half and if it works they stay off or go back if it doesn't.

    There was one lady, who was rather overweight and she was on 7 Requip pills, I think. She got right down to one pill a day, but at that point she needed to go back to 2 pills a day. She said she felt so much better as she came down, but at some point she started to feel a little worse but kept on coming down. She is still on a low dose and she lost a large amount of weight. Whether that had anything to do with the reduction in pills or the walking I do not know. I have not been to that group in the past 2 months because of the travelling.

  • Azilect has helped me greatly and I don't plan to stop taking it, but if the walking helps then there is nothing to lose. Might take my mind of me as well!

  • I'm curious what would happen if you were to stop the fast walking. Would the PD come back? Have you ever had a period when you completely stopped? Or perhaps one of your followers? I find this all very interesting.

    I've started walking every day, but that's not new to me....I've done that all my life until I was too sick to do it anymore. Now that I'm on meds I'm able to again and I'm enjoying it, but definitely not willing to give up my meds. Usually I do a 1/2 mile but have been going as far as 1 mile now and then.

  • Hi TheresaCurley. I have often been unable to do the fast walking, due to injuries caused by the walking. The people who ran the Run/Walk for LIFE stress that we should not walk every day. Being the person I am, when I left the program I began walking every day, thinking that the more I walked the better I would get. But I tore foot muscles and ligaments, Calf muscles and Glutes. So I was forced to walk every other day. There is nothing like experience! Every time I had to stop, I became aware that the symptoms came back after varying periods. A five and a half month period of non-exercise took me five months to get back to normal. I can go 6 weeks without any effect on my symptoms.

    There is a big difference between walking regularly and walking fast at regular intervals. What do I mean by fast? If you are walking so fast you are unable to speak, then you are walking too fast. If you are able to speak fairly normally, while walking, then you are not walking fast enough. If you are able to say a couple of words between breaths then you are walking at the ideal speed.

    Good luck with YOUR walking!

  • Yes John but one person with a claim to reverse his PD and who says he has a diagnosis of PD but not idiopathic PD has no resting tremor but has an essential tremor is hardly a convincing candidate to a neurologist or neuroscientist even if they are to a PwP.

  • So Hikoi....what is the difference between 'PD' and 'idiopathic PD'.

  • Idiopathic PD is Parkinson's disease of unknown origin. If you have the diagnosis of PD it implies that it is idiopathic. If your parkinsonism symptoms are from a KNOWN cause, they are then called (lower p - ism) parkinsonism. Forms of parkinsonism include manganese toxicity (heavy metal toxicity), bacterial infection, stroke, hydrocephalis,

    encephalitis, herbacide/pesticide exposure, older anti-psychotic drugs....

    I was exposed to 2 years of low level herbicide and insecticides thus I do not have idiopathic PD like my father did.

  • This is so good to know, thanks. I have idiopathic Parkinson's because I can not point to any cause.

  • I have been examined by 4 different neurologists, and all of them have stated quite clearly that I have Pd. None of them said I have parkinsonism. The only neurologists who have said I have parkinsonism were the ones who, without examining me, proclaimed that I have parkinsonism, in order to stop people believing that I have Pd. We can't have patients getting better!

  • John,

    If you think you have PD and self diagnose, you have a 73% chance of being correct. If you see 1 doctor and the diagnosis is PD, there is an 80% chance that the diagnosis is correct. With the second trip there is a 84% chance of correct diagnosis and this is as high as this number goes, 84%. Regardless of how many neurologists you see it is 84%. So even with 4 or 45 doctors seeing you they may be wrong 16% of the time. As you noted there is not a definitive test for PD so we are stuck with a clinical evaluation of PD,

    PD has certain characteristics which include resting tremor, slowed movement, possible depression, constipation, anxiety and, perhaps most importantly, a lost sense of smell. 80% of PWP lose their sense of smell at some point, and lost of olfactory function is most severe in PD, Alzheimer's disease and ALS/Parkinson's dementia in Guam. Other neurological illnesses like essential tremor and PSP.... patients do not lose their sense of smell hence loss of olfactory function is a major determinant of PD. In one article I read they stated how would you categorize Parkinson's disease if 80% of the people lost their eyesight? So olfactory dysfunction is a major marker to PD. So are mis-folded proteins called alpha synuclein aka,, Lewy bodies. These proteins are responsible for dementia and cellular degradation thus the reason why Parkinson's is a progressive disease. I am sure some doctors, at least superficially, looked at your claim and stated that while exercise is an excellent way to slow the progression of PD, it cannot totally reverse the disease because of Lewy bodies. Lewy bodies spread like viruses from neuron to neuron and none of the neurotropic factors including, Brain derived neurotropic factor and Glial derived neurotropic factor are able to break them up:

    Overexpression of alpha-synuclein down-regulates BDNF expression.

    ncbi.nlm.nih.gov/pubmed/204...

    And BDNF is a major reason why early exercise slows the progression of PD:

    Intensive rehabilitation increases BDNF serum levels in parkinsonian patients: a randomized study.

    “Intensive rehabilitation treatment increases the BDNF levels and improves PD signs in patients in the early stages of the disease. These results are in line with studies on animal models of PD and healthy subjects.”

    ncbi.nlm.nih.gov/pubmed/242...

    Though exercise can also produce GDNF, GDNF is actually down regulated by alpha synuclein:

    Down-regulation of GDNF Signaling in the Alpha-synuclein Model of PD: Implications for the Use of GDNF in Neuroprotective Therapy

    “We have in a previous study shown that GDNF, which is known to be a potent neuroprotective factor in standard neurotoxin models, is unable to protect the midbrain dopamine neurons against α-synuclein-induced cell death.”

    michaeljfox.org/foundation/...

    Exercise also has been shown to improve mitochondrial functioning – MD, and this may be of great benefit to PWP. But is it the chicken or the egg?

    Is it the egg, alpha synuclein leading to mitochondrial dysfunction:

    α-Synuclein-induced mitochondrial dysfunction in isolated preparation and intact cells: implications in the pathogenesis of Parkinson's disease.

    ncbi.nlm.nih.gov/pubmed/253...

    Or is mitochondrial dysfunction the proverbial chicken leading to Lewy bodies:

    Mitochondrial Dysfunction: The Road to Alpha-Synuclein Oligomerization in PD

    researchgate.net/publicatio...

    Exercise and mitochondrial dysfunction:

    Study Finds Protective Effects of Exercise in Parkinson’s Disease

    “The results showed that physical training, regardless of the type, protects neurons of a specific region in the brain affected in PD known as the striatum. Exercise restored the activity levels of enzymes (complex I and Sirtuin 1) important for mitochondrial function and therefore for neuronal survival.”

    parkinsonsnewstoday.com/201...

    To complicate matters worse, there are 2 different forms of alpha synuclein.

    The more toxic form, shaped like spaghetti, are more toxic and destructive to nerve cells as compared to the 'linguine' form which is less toxic and damaging.

    Two forms of Parkinson's disease identified

    “Why can the symptoms of Parkinson’s disease vary so greatly from one patient to another?

    A consortium of researchers is well on the way to providing an explanation. Parkinson’s disease is caused by a protein known as alpha-synuclein, which forms aggregates within neurons, killing them eventually. The researchers have succeeded in characterizing and producing two different types of alpha-synuclein aggregates. Better still, they have shown that one of these two forms is much more toxic than the other and has a greater capacity to invade neurons.“

    “The “spaghetti” form is also considerably more toxic and rapidly kills the infected cells. This form has shown itself to be capable of resisting the cell mechanisms responsible for eliminating it, whereas the “linguine” form is, to a certain extent, controlled by the cell.”

    researchgate.net/publicatio...

    You are fortunate that you responded to exercise over a 8 year period and scientists take little notice because you are the only known case of people reversing some form of PD with exercise. If there were other people who did the same, say a trend was started, then they would take notice.

    Without a trend of many people reversing their condition with walking, you would need to post some sort of scientific hypothesis as to why you reversed the condition.

    Just saying 'I exercised and GDNF regrew my nerve cells' is not scientific and it is a caricature of exercise. As I pointed out, exercise improved PD symptoms through mitochondrial functioning, BDNF and GDNF. Of course alpha synuclein is the limiting factor to your hypothesis. If you had toxic AS concentrations forming destructive lewy bodies, you could exercise all you wanted and would not reverse the disease at all. I am assuming you do not have dementia.

    This is the reason why so much time and effort is being placed on finding substances which dissolve alpha synuclein.

    In summary, there is a 84% chance of accuracy you have a less severe form of PD with 'linguine' alpha synuclein or no alpha synuclein at all. Consequently you were able to improve your condition thru exercise without alpha synclein damaging existing nerve cells or newly grown nerve cells that were generated.

    Or possibly you have a genetic form of PD without AS that has milder substantia nigra depigmentation:

    G2019S LRRK2 mutation causing Parkinson's disease without Lewy bodies

    ncbi.nlm.nih.gov/pmc/articl...

    Sorry for the lengthy response but the issue is not simple and cannot be answered in a simplistic manner.

    Rich

  • Head hurty to much info I will guess the answer is yes no 4

  • WOW what a bundle of information Silvestrov. I read through it once and can't really absorb it all, but I am going back to re-read it a couple of times and take from it what I'm capable of.

  • John, you are telling us what you believe they said which is fine.

    To support that and as your diagnosis is very controversial a written statement from a neurologist would help. That shouldn't be too much to ask of them? It would also clarify what your neurologist means when he says you don't have idiopathic PD.

    As to implying that neurologists don't want patients to get better, that means I guess that they are all conspiring to keep us sick.

  • Hi Hikoi. I will write to the last neurologist, who examined me in 2015, to see if he will respond.

    Surely, the word of Dr Norman Doidge that he examined all my medical records with my GP and my two neurologists, and that he spoken to a number of patients, who had been helped by me, would be enough evidence to put this matter to rest!

    But I will endeavor to get a written letter from the last neurologist, if it helps.

  • Hi Hikoi. This claim that I don't have idiopathic Pd is quite confusing to me, if not to everybody. Idiopathc means 'of no no cause'. As there is still no cause known for Pd, does this mean that the cause of my Pd is known If so, then perhaps soeone will let me know what it is or was.

  • I wonder if the doctor told you you have a Parkinsonism or did he actual say Parkinsons Disease. A subtle difference which could easily be misheard or misinterpreted.

  • Only your doctor know the cause ot name of your condition. I can but speculate on what you tell of an action tremor only and non responsive to medication.

  • Hi Hikoi. I wonder how many doctors know the cause of any of their patient's Pd, unless the patient came to see the doctor after being sprayed by a crop sprayer. They seldom if ever go through a list of known causes of Pd, such as amalgam fillings in teeth and mercury etc. Neurologists don't have the time to do that.

  • They don't know the cause of their patients PD John, except if it is drug induced or due to vascular problems. All others are called idiopathic PD so if your neurologist said you do not have idiopathic PD is he actually telling you you do not have PD.

  • Your neurologist is correct.

  • My husband could not take Azilect and as far as the Senimet taking care of the symptoms, that is a joke. He takes it 5 times a day and it does absolutely nothing for his symptoms and the side effects along with the other meds he takes is sometimes worse then the PK.

  • So sorry your husband has these medication problems.

  • I feel for him, and you - it can be very difficult to get the dose adjusted and depends on what else he takes too.. Has he been diagnosed long?

  • tobebo, I wonder if there is a possibility that he may have been misdiagnosed if he is not responding?

  • I started Azilect 1mg shortly after being diagnosed with pd in Jan 2015. My symptoms were mild, & my doc said I may see some relief of my pain & tremor. I briefly felt a mild mood elevation but nothing more. My symptoms are still at level one but my tremor is worse and bothersome, plus the stress factor has greatly increased. But I continue to take it & low dose of C/L.

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