Parkinsons / Parkinsonism ?

Hello This is my first post here. My hubby was taking Venaflaxine in August then by mid Sept was taken off cold turkey as had slurred speech. Both CAT & MRI brain scans came back clear. Beg of October was put on Lyrica - speech got worse and also walking issues began to kick in which still exist now. No appointment is forthcoming with the Neurologist at the hospital to clarify the situation and it seems that he is being prescribed Sinemet for a condition that hopefully he may not even have. Has anyone else been in this situation please and what harm can this drug do if he shouldn't need it ? Any help much appreciated - thanks :)

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40 Replies

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  • Should not harm him. Many Drs. give Sinemet as a trial to rule PD in or out depending on the patients reaction to it.

  • Thanks for your reply. Been on it for a week now and cannot see a change apart from making him sleep a lot. As of today been put on 3 a day. So obviously if symptoms improve it will lend more to Parkinsons ?

  • Agree the Sinemet should not harm him but very concerned this doctor is just throwing meds at the problem without doing a proper diagnosis. Taking him off Venlafaxine cold turkey is another red flag. Slurred speech is not such an emergency that the MD couldn't have him taper off instead. And how he refuses to see your husband again? I think the message is clear - find a different doc.

  • I Totally Agree. Find ANOTHER Dr. ASAP.

  • Parkinson's: Latest From the Experts

    “…leading medical experts at UC San Francisco's renowned Parkinson's Disease Clinic and Research Center share their insights and expertise…”

    25:55 video time

    “You cannot clearly make the diagnosis by simply giving the patient a trial of medication. Giving a trial of medication too early in the course of the disease has the potential of doing harm.”

    28:16

    “They may have been taking a particular medication that it self induces Parkinsonism and unless that is recognized the disorder will continue and lead to increasing disability.”

  • Hi RoyProp. At exactly 39.08 on this video that scientist said, probably the most important thing on the whole video.

    He said the following: "My understanding of the disease, and understanding that it is actually a problem of neural circuits, that we may be actually able to develop treatments for the disease that may not even be pharmacological, and they may not involve drugs. They may simply involve exercising the brain in some particular way that we don't understand yet, in a way that will reverse the process before it has gone too far. So we don't really understand what that is yet.

    We need to understand more about the circuits. You know we send patients for physical therapy because we do think it helps with their symptoms. But what I am talking about is some type of exercise for the circuits of the brain, which may reverse the process in some physiological way that does not even require drugs."

    Do you know how I can get hold of this scientist? I have been talking about this for 14 years now, and nobody has been listening. I am now 82 and cannot live forever. Before I die, I have got to discuss my history and how it fits exactly into what this scientist is saying.

    When I am doing my walking, my conscious brain is working overtime, controlling my leg and arm movements. That is not natural. Those movements are normally carried out automatically, by the subconscious brain. Not all my movements are faulty, but I have to concentrate only on those that are faulty, the others work just fine. When I lose concentration, my feet scrape the ground and I tend to fall.

    In 1992, I shuffled, I could not talk properly or write properly. I could no longer speak fluently and my speech was slurred and garbled. I ran a large company, but in 1992 I had to give that all up, because I no longer functioned properly.

    Today I speak to large meetings about my Pd and how I have taught myself to walk properly. My movement symptoms have mainly reversed themselves and for the past 14 years I have lived a normal life, free of any Pd medication. I still do the fast walking and in that way I stay fit and healthy.

  • I do not have the scientist's contact details.

  • John, you can reach Dr. Aminoff at the UCSF neurology clinic. He still teaches but I don't think he treats patients anymore, or if so, rarely.

  • Hi Beckey. Thanks for this. I don't know how to get his email address but I will try.

  • This is an old video. When I told my doctor about it (she is a researcher and practitioner in the movement disorders clinic at UCSF) she was furious.

  • Hi Beckey. The story is the same old, same old, but I have never seen the bit I quoted to everybody. Why did your doctor get furious? I am convinced that if a medical cure is not found for any chronic disorder they are not interested in any other form of treatment. I don't wish any chronic illness on anybody but I wonder what these medical people feel about non medical treatments when they do get a chronic illness?

  • Becky, how come she was Furious?

  • Because she says there's not a snowball's chance in hell giving a person without PD sinemet can cause any kind of disability or illness.

  • On the Neurotal/Parkinsons site there is at least one person who having discovered the misdiagnosis of PD could not get off the Sinemet he had been on for many years because of the withdrawal problems.

  • Has he been able to reduce his dose? What an awful circumstance.

  • It was several years ago and I no longer go on that site.

  • Stonroy

    Get your husnand to a doc any doc asap. Even the ER.

    Nobody should go cold turkey off of Velaxflazine.

    Let us know how it goes please.

  • Been off Venflaxine since 19th Sept now and no way going back on it

  • Hi Stonroy. Pd medications are designed to temporarily deal with a few of the symptoms. They do nothing to slow down the Pd. That is a FACT!

    If anybody goes onto Pd medication, the best that will happen is that one or two symptoms will temporarily improve, but will return within a few hours. Slowly the patient will have to increase the amount of medication taken and the time that the symptom or symptoms feel great get shorter and shorter until the time arrives when no additional medication does anything to help and the only thing left for the patient is Deep Brain Stimulation, which still does nothing to slow down the progression of Pd.

    There is one thing that everybody can do, when shown how, and that is to take up Fast Walking. visit my website to find out more = reverseparkinsons.net or write to me at johnpepper@telkomsa.net. I do not charge for what I do. I am a Pd sufferer and have been able to overcome most of my Pd symptoms.

    Good luck!

  • Dear Mr Pepper,

    I was dxd with PD last spring. Shortly thereafter I read your story in a book about neuroplasticity. Fascinating.

    Early symptoms were tremors in my left index finger, fluttering muscles, random leg muscle siezures, anxiousness, occasional tough bouts of constipation, teeth chattering, tactile defensiveness in bed which inhibited sleep, shuffling, small cursive writing, moisture in the corners of my mouth, an occasional PD "shade" if I broke my routine for a couple of days, also an occasional feeling of slight tipsyness, and general feelings of "getting older."

    I probably had PD for some time which had been masked by my daily aerobic ex routine, lots of coffee and a evening Martini...

    Since the dx, I have added to my daily routine 1200 mg of CoQ10, 3mg of Inosine, which is the substance in a current, major Phase 3 experiment (along with Potassium Citrate to guard against gout and stones from elevated urate levels). I've also added 0.5 mg of morning Ativan, weekly Feldenkrais sessions, some acupuncture, and a series of Meyers (B complex etc etc) and Glutathione coctails. To my normal daily treadmill and rowing exs I've added 3 days per week of "free range" outdoor fast walking, assisted by heavy random pulling on long leash by my Golden Retriever, Roxie. And I have an intensive massage session by someone who can read and status my body once per month.

    Bottom line, 6 months after the PD dx I have eliminated all symptoms except slight teeth chattering. Most nights I sleep like a baby if I retire when I am tired, and sometimes when I think of it, take a Melatonin. I'm working on bringing my digestive slow down under control. Found prune juice quite helpful, and am experimenting with some homeopathic compounds. I also take a little more time with my cursive writing, and have found that my printing is not affected. Getting there!

    I mostly feel GREAT!

    Hope some of this is helpful to your readers.

    Bob

  • Meant to say 3G of Inosine per day, the dosage being used by the experimental group in the current Phase3 Trial. See encouraging NIH research summaries on earlier studies by Mass General on Inosine.

    Hope this helps folks.

    Bob

  • SELMeder, how old were you at DX? What is the average DAILY time you give to your exercise program? Thanks!

  • I was 72 when I received a "definitive PD,dx," and was told by this new Neurologist to go away and report back in 6 months.

    To answer your second question, I spend a good hour every day in a fitness center whereever I am, unless on a long plane ride: 45 min on treadmill (4.5 elevation/3.4 speed) and 15 min on Concept2 rowing machine (cranked up to max tension). Helps keep my a1c in bounds and gets me moving vigorously without damage to my joints.

    To this daily in door routine I have added "free range" fastwalking on uneven ground, during which I allow my Golden Retreiver, Roxie, to yank me around at the end of her long leash. Makes me feel really grounded. Exposure to Feldenkrais methods is at the root of this therapy.

    I also avoid rock star parking spaces, preferring to extend my travel from the car to where I shop. I get up from my work frequently, dance as often as allowed with my wife of 50 years, who can still dazzle on the dance floor. I've started brief stints of jogging which I havent tried in several decades. Now feel comfortable doing so. And I have developed a hankering to try shooting baskets. Probably won't be pretty.

    My whole life pattern has changed for the good since the PD dx 9 mos ago.

    I used to be a triple Type A. As a scholar during my first two career decades I sat incessantly while writing 13 books. Prided myself in being abke to stay focused for 10-12 hours. Later when I translated my IP into a consulting career, I logged over 10 million air miles over the next two decades

    LOTS of sitting!

    My life is now so much more in balance. I start each day slowly with my wife. Then I work out for a couple of hours including prep. Next, I work for a couple of hours, trying to focus on accomplishing one major thing pertaining to my career. Some of those days might include a specialized treatment. The evenings often begin with a vodka martini with my wife with Roxie in my lap.

    Most of my work now is vrtual. Often over Skype. I let my IP do the traveling.

    I dont know how long this will last. Thr PD beast is a bay for the time bring, which motivates my new routine when I contemplate playing hookie from it. But the beast is still wihin. It is systemic. My teeth still lightly chatter when I allow my jaws to relax together.

    And I remember the movie, "Charlie," with some trepidation. But I'll certainly take what I've got for now.

    Hope some of this helps.

    Bob

  • Yes, thank you!

  • Hi Bob. You are like a whirlwind! Doing so many different things, your body and brain must be giddy. You say you are more or less symptom free, so where is the problem? I would say carry on as you are and see what happens.

    I am sorry to annoy certain readers of my posts but I cannot stress too strongly the side effects of Pd medication. It should be avoided, if at all possible. As some scientist or doctor said in one video, "Pd medication is a band aid for symptoms". Bearing that in mind and the serious accumulative side effects, they should be avoided at all costs.

    Having said that, if you get relief from one or more of your symptoms, then keep taking the medication, bearing in mind that effect is only temporary and will become shorter and shorter and the quantity of medication needed to maintain that benefit will become more and more until that benefit disappears. Then you have nowhere to go.

    Why allow yourself to get to that point if you can repair the damaged brain cells? In that 59 minute video, that same scientist or doctor also said that certain exercise does something to the brain that repairs the damaged brain cells. That is exactly what fast walking has done for me. I have not needed to take Pd medication for the past 14 years.

    My question is, "Knowing that exercise can and does repair damaged brain cells, then why is nobody in the scientific world interested in hearing what has happened to me, and why I am basically free of Pd symptoms?"

    If anybody knows whom I can talk to in the science world so that they can investigate this further, then please, please, PLEASE let me know. This is driving me crazy! I will not live forever and when I am gone, what I know will disappear forever.

  • Selmeder, how old were you at DX? What is the daily average of time that you give to your exercise routine? Thanks!

  • Hi Enjoysalud. I don't know if your question was addressed to me, but if it was, I was 58 at time of diagnosis. However, I had been suffering symptoms since I was 29 years old. I assume that because I did a lot of gym exercise and running in those days, my symptoms took longer to mature.

    I do my fast walking for one hour, three times a week. I never exercise two days in a row.

    You can look this all up on my website - reverseparkinsons.net. or write to me - johnpepper@telkomsa.net.

  • Thank you, it was meant for Selmeder. I read your book some time ago.

  • Hi enjoysalud. Have you tried the fast walking?

  • Hi John,

    I have ordered your book from amazon luckily, I found a new copy by (Through the Stacks LLC Store) I will go through your interesting experience as soon as I receive it because I want to learn more about your speed walking technique .

  • Hi Javeraaalhd. I am not aware that Amazon was selling my book, other than the eBook version. Certainly no stores sell my book, so I'd be pleased to know what color the cover is?

  • Hi Jaberaaalhd. Gosh! I sell my book on my website for $20 including postage. Amazon does not sell my book new. If it sells my book it must be secondhand. You paid a fortune for it.

  • Thanks .Its ok , i spent too much on doctors and many other things without any real benefits, your book is worth the amount spent due to your unique experience .

    i am interested in recovery stories like yours, and like the Tai Chi couple and any real recovery story from Parkinson's because this what we got on our hands now.

    I reached to the point where my condition is stable without any decline I think I succeeded in halting my Parkinson’s progression, I need to do something ells to push this further and i will try .

  • Yes he has! Presently laid up with pneumonia.

  • Hi Enjoyslud. Please take care with the pneumonia, it is very dangerous with Pd!

    How many months did he do the fast walking? Did he feel any benefit from doing it, especially his physical condition?

  • Thank you for your concern!

  • I did a search about pneumonia and zinc and found many articles about either zinc deficiency or zinc supplementation in pneumonia patients.

    Serum zinc level in patients with pneumonia: a six-month long cross-sectional descriptive study at Liaquat University Hospital Hyderabad, Sindh, Pakistan

    "Conclusion: Serum zinc level was found to be low in patients with pneumonia.

    "

    jpma.org.pk/full_article_te...

    Other articles:

    The Effect of Adjuvant Zinc Therapy on Recovery from Pneumonia in Hospitalized Children: A Double-Blind Randomized Controlled Trial

    "Conclusions. Supplemental administration of zinc can expedite the healing process and results in faster resolution of clinical symptoms in children with pneumonia."

    hindawi.com/journals/scient...

    Serum zinc and pneumonia in nursing home elderly.

    "CONCLUSION:

    Normal serum zinc concentrations in nursing home elderly are associated with a decreased incidence and duration of pneumonia, a decreased number of new antibiotic prescriptions, and a decrease in the days of antibiotic use. Zinc supplementation to maintain normal serum zinc concentrations in the elderly may help reduce the incidence of pneumonia and associated morbidity."

    ncbi.nlm.nih.gov/pubmed/179...

    ____________________________________________________________

    Comparison of Four Commercially Available Zinc Supplements for Performance in a Zinc Tolerance Test

    "....... zinc glycinate showed the best acute uptake of the four complexes tested."

    fasebj.org/cgi/content/meet...

  • Silvestrov, thank you. My son took the micro-nutrient blood test by SpectraCell labs July 27, 2016. His zinc was at 47%, one only needs to be above 37% to not be deficient. The only thing he was low on was ASPARAGINE. You supplied where I could buy it and he has been taking the supplement since then. All his B complex, minerals, etc, are at sufficiency or above (most are above).

    He is doing lots better. He can now walk a few yards without his walker. His MD said NO exercise until after Dec 20th. He was aspirating by me putting him on his stomach, his head hanging over the bed, and me pressing down on his back. Huge gobs of phlegm resulted in my effort. I was doing this about 3 times a day. His MD yesterday gave him a referral to pulmonology so he can be aspirated. Today he appeared fine, so that part might be over.

    He seems to do all the right things. For example, I read how cinnamon is good for PD. My son puts at least a TBS or more on his oatmeal, along with raisins and coconut oil. BTW, his appetite is back. I put him on 100Billion ULTIMATE FLORA probiotic and it's leading to more regularity. In my family good elimination was the key to good health.

    I am exhausted. These are not merry holidays for me. I hired a 5 day 21 year old male helper to come in from about 10:30-4:30pm. He leaves in a few days for family holidays in Mexico. I go home and try and catch up on my own personal affairs, but also to check out referrals on helping my son. Just got in from the bank and the health food store.

    I think I need to increase his N-A-C from 2 500mg to 2 600 mg. Thanks Stevie3 for info on the brands.

    Thank you, again, Silvestrov. I always appreciate your help. Jaberaaalhd's postings remind me of you....citing where he got his info. Very helpful.

  • Before trying meds consider asking for a vit. B12 injection. MM

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