HeroTeo - The Parkinson’s Fighter

Anonymous
Posted: Sat Jul 25, 2009 4:44 am Post subject: Leg Freezing

My brother has freezing on his leg when his medication is wearing off.

There are way to prevent him from falling down until the freezing going off.

1. stop from going foward going backward

2. stay horizon the place where you are to release the freezing

3.Holding both leg and slap side of both knee to release the freezin.

Is it we walking we concentrate our movement to balance?
Is it cycling we paddle up and down with one leg after the other?

Regards

Dr. FernandezJoined: 20 Jan 2007Posts: 90
Posted: Thu Jul 30, 2009 9:48 am Post subject:

Well, the brain is an interesting organ! It is fascinating. Sometimes, we need to “trick it” to get the results we want. PD patients to well when they are cued, or there is a pattern that they need to follow, or there is a line that they need to cross, or there is a rhythm or beat that they need to in tandem with. These are some audio or visual tricks used for freezing. Spinning and cycling works the same way. IF the freezing occurs during wearing off however, they might benefit from increasing PD meds. Yours,_________________Hubert H. Fernandez

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Anonymous
Posted: Thu Jul 23, 2009 7:05 am Post subject: Complementary & Alternative Medicine

Due to sideeffect of the medication there are growing interest for parkinson’s patients in alternative and complementary medicine or therapies who will live with disease for a longer peroid of time. The CAM offers helpful information related to non motor and motor symptoms i.e proper diet, exercise, constipation, fatigue, insomina, massage. They try to minimize their usage of medication they take to minimize the physical or mental sideeffects on them. Kindly brief their potential benefits and risks for the alterative therapies. Sometimes the best treatment plans involve a wide range of interventions with their usage of the medications.
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Dr. FernandezJoined: 20 Jan 2007Posts: 90
Posted: Thu Jul 30, 2009 8:54 am Post subject:

Sorry, I don’t know much about CAM. Mainly based on my ignorance, I am always skeptical about alternative therapies. While they make wonders for individual patient reports, when studies are performed using a rigorous, blinded, placebo-controlled design, the results don’t always hold up…the perfect example is intravenous glutathione. While we hear about miraculous recoveries of glutathione, when Dr. Hauser’s group in Tampa performed a double-blind, placebo-controlled trial on this therapy, there was no sigiificant difference in the performance of patients who received glutathione versus placebo. So, until studies are performed and results are shown, I would always be skeptical, no matter how promising it sounds. Yours,_________________Hubert H. Fernandez

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Anonymous	Posted: Fri Jul 24, 2009 9:43 am    Post subject: complementary and alterantive therapies There are time when they and families feel hopless,times when feel desperate about medical situation. In these movement they tend to complementary and alternative therapies, no matter how unrealistic or far-fetched they appear or how they cost. Therefore, there are growing interest for parkinson’s patients in alternative and complementary medicine or therapies who will live with disease for a longer peroid of time.The CAM offers helpful information related to non motor and motor symptoms i.e proper diet, exercise, constipation, fatigue, insomina, massage, pain managment, Tai chi, rehabilation,speech therapy,acupuncture,spa treatment & etc.As the result they try the above therapy to minimize their usage of medication they take to increase comfort or minimize effect of the physical or mental on them.Why there are some doctors who do not pleased for the above therapies as they are yet proven?Kindly brief their potential benefits and risks for the complementary/ alterative therapiesRegards
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Dr. Fernandez Joined: 20 Jan 2007 Posts: 90	Posted: Thu Jul 30, 2009 9:00 am    Post subject: I just responded to your earlier message. But know I relaize that CAM means complimentary and alterantive therapies.The good news is that good and proper research is underway on Tai Chi and Exercise. So we will know the exact benefits of those very soon. Our preliminary data on exercise is very compelling though, so we advocate this for all our patients.As for the others, none of the current vitamins work, unfortunately. CoQ10 and creatine are still being studied.Our current (good) data are not impressive for glutathione, Vit E, vit. C, and accupuncture.I hope this helps.Yours, _________________ Hubert H. FernandezAnonymous Posted: Thu Jul 30, 2009 8:48 pm Post subject: Exercise benefits Doctor, I wish you guys would study pilates for pd patients. My husband takes pilates twice a week. He takes 60 minute solo lessons and he really gets his butt kicked. It’s not classic pilates but more of power pilates. During all moves, he is encouraged to inhale deeply and give a forceful exhalation upon exertion. Most of the moves require balance from the core. I know it has decreased his falls. Every muscle group is worked and stretched. I know his instructor is especially talented but I truly believe it should be a basic for PD patients. My husband has moderately severe to severe PD and has been doing pilates for 2 years. I hope we never have to rely on PT because insurance only pays for 8-10 sessions then the patient has to decline to receive another PT order. With pilates, we don’t have to experience the decline except for the normal progression of pd. Back to top Dr. OkunJoined: 19 Jan 2007Posts: 251Location: University of Florida Posted: Fri Jul 31, 2009 10:57 am Post subject:Thanks for the wonderful comments. I have a number of patients who also swear by pilates. I think the exercise must be tailored to the person and what they can handle and suspect the research will show many effective strategies._________________Michael S. Okun, M.D Anonymous Posted: Fri Jul 31, 2009 2:54 pm Post subject: alternative and complementary medicine My own experience yields at least one winner and it is evident, for me at least, in two to four days. I know that this is anecdotal but my grant check has not shown up yet. ;-)The combination of alpha lipoic acid (400 mg) and acetyl-l-carnitine (3 g) boosts me across the board, purportedly by improving mitochondrial function. Dr. Bruce Ames has published on this a dozen or so times and the effect is impressive. Back to top Dr. Okun Joined: 19 Jan 2007 Posts: 251 Location: University of Florida Posted: Sat Aug 01, 2009 7:15 pm Post subject: Thanks for the nice comments.I have patients who take these supplements and swear by them. We just don’t know if they are effective in PD, or against symptoms of PD as we don’s have the data. We are therefore not recommending patients expend dollars on them, but at least in my practice I do not object if they would like to try them. _________________ Michael S. Okun, M.D. Posted by My family at 10

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teokimhoe Joined: 03 Mar 2007 Posts: 144 Location: Malaysia

Posted: Sat Jul 25, 2009 8:02 am Post subject: Leg Freezing When you have leg freezing whilst walking instead going forward going backward to prevent a fall.Holding both leg and slap side of both knees to release the freezingStay horizon the place where you are to release the freezing.The reason why you have leg freezing because you are under medication and it is wearing off.It is strange why the parkinson patient does not have leg freezing problem whilst on cycling?Is it we walking we concentrate our movement to balanc? Is it cycling we paddle up and down with one leg after the other? _________________ to help the PD patients aware the diseases and encourage to set up support groups to educate the patients and their immediate families Rogerstar1 Joined: 14 Mar 2007 Posts: 416 Posted: Sat Jul 25, 2009 10:36 am Post subject: It has been my experience that at least in the early years one’s voluntary movements (typing, throwing a ball etc.) are affected most during ‘off’ periods. Autonomic movements like breathing, ducking to avoid or blocking a ball thrown at your face by instinct, moving a leg forward or back to maintain equilibrium and ‘break’ or prevent a fall are involuntary and hindered only after lengthy disease progression. Thus. willing myself to step off a curb or into a closed hallway or room is sometimes a problem if ‘off’. Catching a fall by moving a leg to balance is still mostly an automatic reaction that I simply …do. But, alas…that ability is slipping away, too. Best to you Tee-Man.Rogerstarbernard shaw Joined: 19 Aug 2008 Posts: 321 Location: Austria Late UK Posted: Sun Jul 26, 2009 12:42 pm Post subject: Bern Leg movements. I too have these stupid periods where one leg will suddenly stop right in the middle of a step. I have used a walking stick for the last twenty five years and I am sure that it is the stick that stops me falling flat on my face. My last fall nearly a year ago I not only broke the little finger of my right hand but had to undergo an hours operation to fix the break and put the finger lesion back into place and five stitches to close the wound. Painful to say the least. I wish you much luck with your medication, my Neurologist increased my sinemet retard 200/50 by one extra tablet since then the leg movements are better. Keep smiling best regards from Bern _________________ If your face wants to smile, Let it. If it doesn’t, Make it.

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	Posted: Sun Jul 12, 2009 7:53 am Post subject: Genetics and parkinson’s I notice that I have been suffering from feelings of anxiety and impulsiveness for the pass few years, and this feelings have been particularly strong after I had been diagnosed as having Parkinson’s Disease (PD). I overeact even to the most trivial of things, and I would lose my temper and take it out on my family members. I tend to get very sensitive over every tiny issue that crosses my mind. I get depressed and I have the feeling/urge to express myself over and over again on the issues I have problem with. This results in me repeating the same issues over and over again until my “urge” dies down. Furthermore, when I have this “urge”to express myself, I tend to get very emotional and impulsive, whereby I feel the need to immediately do the things to rectify the situation. I will feel very unsatisfied and unfulfilled if things does not go my way. I noticed that my children, particularly my son and one of my daughters, suffer from anxiety as well, and he/she can be pretty impulsive too. Is my feelings of anxiety/impulsiveness a result of PD? If so, please enlighten me on the causes associated with it. Since my son, who is only 36 years old, exhibit the symptoms of anxiety, can it be passed on genetically? For your information, I remember my mother has the same behaviour too
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Dr. Okun Joined: 19 Jan 2007 Posts: 251 Location: University of Florida	Posted: Thu Jul 16, 2009 9:00 pm Post subject: It is impossible at this time to say but there are many researchers that believe anxiety, impulsiveness and mood disorders may be genetic and run in some families.Patients with PD particularly younger patients (but any patients) may suffer from anxiety, depression or other mood disorders as a primary biological phenomenon related to the PD. _________________ Michael S. Okun, M.D.

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There are time when they and families feel hopless,times when feel desperate about medical situation. In these movement they tend to complementary and alternative therapies, no matter how unrealistic or far-fetched they appear or how they cost. Therefore, there are growing interest for parkinson’s patients in alternative and complementary medicine or therapies who will live with disease for a longer peroid of time.

The CAM offers helpful information related to non motor and motor symptoms i.e proper diet, exercise, constipation, fatigue, insomina, massage, pain managment, Tai  chi, rehabilation,speech therapy,acupuncture,spa treatment & etc.

As the result they try the above therapy to minimize their usage of medication they take to increase comfort or minimize effect of the physical or mental  on them.

Why there are some doctors who do not pleased for the above therapies as they are yet proven?

Kindly brief their potential benefits and risks for the complementary/ alterative therapies

Regards

Tags: General by heroteo
No Comments »

Due to sideeffect of the medication there are growing interest for parkinson’s patients in alternative and complementary medicine or therapies who will live with disease for a longer peroid of time.
The CAM offers helpful information related to non motor and motor symptoms i.e proper diet, exercise, constipation, fatigue, insomina, massage.
They try to minimize their usage of medication they take to minimize the physical or mental sideeffects on them.
Kindly brief their potential benefits and risks for the alterative therapies

Sometimes the best treatment plans involve a wide range of interventions with their usage of the medications

Tags: General by heroteo
3 Comments »

Anonymous	Posted: Tue Jul 07, 2009 9:16 am Post subject: My receipe to stay as normal As Parkinson is a progressive disease the medication of Parkinson are not the treatment but they are only help to relief the symptoms i.e tremor, rigidity,akinesia postural instability (T R A P).It is a chronicles disease, a degenerative neurologic disease. Degenerative disease means declining in quality thus the disease increases in severity over time.It is a designer’s disease some are more serious and some less serious . The similarities among these diseases can make diagnose difficult and frustrating.My early prescription were eight Requip 2 mg and six Sinemet daily. I received a heavy doses as was told I am doing long hours exercises at gym centre. There have been increased interest that exercises, diet,nutrition,supplements and understanding of the disease besides medication are the disease modifying or neuroprotective therapies that they slow the progression of parkinson’s.,studies consistently report that those with PD who exercise regularly tend to do better than those who do not. Healthy diet can help us achieve or maintain normal body weight, increase our energy level, boost our immune system, decrease risk factors for certain conditions or illnesses, and reduce constipation. It can be particularly helpful for people with PD to pay close attention to issues of diet and nutrition as poor nutritional status can result in, and contribute to, many of the common complaints associated with PD. For example, difficulties with swallowing can prevent people with PD from getting adequate nourishment, which can lead to a worsening of motor symptoms and increased weakness resulting in falls. In addition to promoting overall physical and emotional health and well being, exercise tends to minimize some of the primary and secondary symptoms of the disease. Though exercise is not a cure, it can help people with PD maintain muscle tone and function, remain flexible, and improve overall mobililty.At present I optimize my prescriptions to 2 Requip and 3 Sinemet daily.Is it my understanding the symptoms of parkinson’s and the management of the disease slowdown the disease progression?Is it I am putting on masked face that I look as normal ? Is it parkinson’s a designer’s disease that parkinson patients find difficulties doing hourly daily exercises? Is it my hourly heavy exercises daily help me to put on masked face as normal? My physcial exercise trainers surprise that I am doing better than the normal during my physcial training exercises. My doctor, relatives, friends agree too. The above are my recipe for living well the disorder disease. Kindly comment
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Dr. Okun Joined: 19 Jan 2007 Posts: 251 Location: University of Florida	Posted: Sat Jul 11, 2009 1:36 pm Post subject: Thanks for your comments.There are often many motor and nonmotor symptoms in PD and they usually stretch beyond the TRAP symptoms you mention. PD is a designer disease in that it is different in different people and treatment approaches must be tailored.Exercise may improve the symptoms of PD. How much and how often and in which patients is unknown.Exercise is thought to maybe modify disease progression or be neuroprotective but this is also unknown. Some people believe exercise or instrument playing (trumpet or clarinet) improve facial expression but there is little data on this phenomenon. _________________ Michael S. Okun, M.D.

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Secret recipe behind the mask

I often smiled as I watched the video recording of my kick-boxing exercise which I have uploaded to YouTube a few weeks ago. My trainers and videographer told me the same thing – “You do not look like a Parkinson’s patient at all”. Even my doctor shook his head in disbelief and said, “This is shocking. I can’t imagine a 70-year-old Parkinson’s patient doing such a strenuous exercise such as kickboxing. I am sure that you are the only Parkinson’s patient in Malaysia who is doing the kickboxing exercise.”

As early as 1998, I already had both the motor and non-motor symptoms. Since my diagnosis in 2002, I went through a period of depression, anxiety, denial and anger. Subsequently, I bounced back after discovering a secret recipe for fighting Parkinson’s, which consisted of: knowledge (is power), exercise, medications, nutrition / supplements and prayer. In my quest for knowledge, I browsed various Parkinson’s websites, raining them with questions, questions and questions. I even started the first Parkinson’s blog in Malaysia (www.heroteo.com). I tried to learn everything about Parkinson’s in order to overcome all complications - the Chinese heroes won their battles by understanding their enemies first.
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Animal experiments showed that exercises may be neuroprotective. Rats which were forced to exercise had a lesser degree of brain damage after they were exposed to poison. In mice which were made to undergo treadmill exercises, there was increased production of dopamine.

Parkinson’s patients are comparable to the car. The medications are needed to help patients to start walking, while fuel or battery is needed to help start the car engine. Exercises are needed to improve the patients’ physical mobility and endurance, while driving helps to recharge the battery. Thus, exercises help our “engines” warm up before leaving home and keep the “cars” going everyday. Even healthy people such as Bruce Lee, the Chinese kungfu master, know that exercises are beneficial.

As such, since 2005, I decided to “get physical”. I am spending 3-4 hours everyday at the California Fitness gym, doing a wide range of “heavy” exercises such as kick-boxing, weight-training and spinning (indoor cycling). Twice a week, I do yoga exercises at home with the guidance of a trainer.

Since this year, my physical condition has drastically improved. I sleep and eat well (I eat to live a healthy and good life). I enjoy driving around the Kuala Lumpur city with my wife everyday and going overseas for holiday. I managed to reduce the daily dose of Parkinson’s medications recently. Sometimes, I wonder whether I am just a “normal person” behind the mask.

Am I a Parkinson’s patient? – Try taking my “killer” punch and you’d wonder whether I really have Parkinson’s.

I know that it is technically difficult to prove that exercise has neuroprotective effect in Parkinson’s patients. Despite this, I believe that exercise has slowed down my disease progression. I hope that my video recording will bring hope and happiness to all Parkinson’s patients in this world, by reminding them that they can still live a physically active life.

Mr. Hero Teo, Kuala Lumpur, Malaysia
10th July 2009.

Hua said…

Hero,You certainly don’t look like a Parkinson’s patient. Keep up the good work!

I’m Hua, the director of Wellsphere’s HealthBlogger Network, a network of over 2,000 of the best health writers on the web (including doctors, nurses, healthy living professionals, and expert patients).  I think your blog would be a great addition to the Network, and I’d like to invite you to learn more about it and apply to join at Wellsphere.com/health-blogger.  Once approved by our Chief Medical Officer, your posts will be republished on Wellsphere where they will be available to over 5 million monthly visitors who come to the site looking for health information and support. There’s no cost and no extra work for you!  The HealthBlogger page (http://www.wellsphere.com/health-blogger) provides details about participation, but if you have any questions please feel free to email me at hua@wellsphere.com.

Best,
Hua

July 31, 2009 10:33 AM

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Anonymous
Posted: Sun Jul 12, 2009 7:40 am Post subject: stoop posture

Being a person suffering from Parkinson’s Disease (PD), I notice other PD patients, including myself, suffer from a stooped posture, particularly while walking. I would like to share with you my experience in the causation of the posture suffered by most, if not all PD sufferers. I notice that my muscles surrounding my shoulders right down to my arms, are generally very stiff. Because of the stiffness in the said muscles, I have difficulty in swinging my arms when I walk. The swinging of the arms on opposite sides of your limbs, i.e. you swing your right hand when you walk with your left foot and vice versa, during walking gives us the counterbalance required to maintain a correct posture while walking. Due to the lack of arm motion due to the stiffness of the muscles in the shoulder region, the body will naturally be off balance. To compensate for the lack of balance, I find myself exagerating the arm swinging movement, in that I need to push hard with my shoulder to swing the hands forward and backward. This in turn lead to the muscles in the shoulders and upper back to tense up. This result in the body having to stoop forward to maintain the balance of the body during walking. I would be grateful for your input and comments on this.
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Dr. OkunJoined: 19 Jan 2007Posts: 251Location: University of Florida
Posted: Thu Jul 16, 2009 8:57 pm Post subject:

These are all excellent points, however it is not clear the gait is the culprit (or the armswing) underpinning the posture in PD. There are several theories and it may infact vary from patient to patient. Dystonia, muscle rigidity and in rare cases even co-existing muscle disease has been reported. We don’t have a great treatment so we recommend medication optimization, PT, OT and stretching!_________________Michael S. Okun, M.D.

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