Thursday, November 29, 2007

words by reader

Hi Teokimhoe,

I enjoyed stumbling across your blog.

I was my mother’s caregiver, and she suffered with Parkinson’s for close to 15 years, so much of this, I know from a caregiver’s perspective.

What you describe about depression seems right on, and I can’t help but think it’s neurologically based. My mother was a very optimistic, if not a downright self-centered person, so let’s just say she was overall pleased with life.
The Parkinson’s mask (the face’s inability to show expression) was a reflection of what PD does, how relentless and exhausting it is. I also noticed her gains and plateaus, as well as her dips. She was a fighter. Of course, my mother was older, and that has to be factored in since the elderly have their own depression issues to face.
I tried to cheer her up, keep her busy, focus ont he positive, and my sarcasm and banter helped diffuse difficult moments, but there were times when I simply needed to be quiet and hold her hand.
I wrote every day during the last three years of her life–she passed away at 92. I wrote our battles with the disease–and each other (she also developed ementia/Alzheimer’s in the end) and what caregiving did to our lives, our relationship and our perspecives.
I wish you well. ~Carol D. O’Dellauthor of MOTHERING MOTHERavailable on Amazon and in most bookstoreswww.mothering-mother.com

Wednesday, November 28, 2007

Nutrients and Parkinson's

Posted: Sun Apr 08, 2007 4:56 am Post subject: Q: Nutrition and PD

How to balance/compromise between the Nutrition and PD treatment as it can cause a Patient developing weight loss and under-nutrition? How to optimize/manage nutrition with PD patient? What are the sideeffect the PD medication on patients that PD are at increased risk for malnutrition? PD is a complicated disease, that affect each person differently,but there are needs for nutrition to sustain the body and stay healthy. Kindly advise. TEO KIM HOE
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Kathrynne Holden, MS, RDJoined: 22 Jan 2007Posts: 94Location: www.nutritionucanlivewith.com
Posted: Mon Apr 09, 2007 11:51 am Post subject:

Dear Teo, These are very good questions, because many people with PD become malnourished. Here are some of the possible causes – - nausea - loss of the senses of smell and taste - loss of appetite -- sometimes due to medications -- sometimes due to depression - loss of manual dexterity - eating very slowly, unable to finish meals; often because chewing and swallowing becomes tiring - fear of choking - difficulty swallowing To optimize nutrition, it’s first important to determine whether any of the above conditions occur. If so, then the approach must depend upon managing that condition. For instance, if depression is the cause, then the first approach will be to manage the depression. If due to inability to manage eating utensils, then the first approach will be to locate plates, cups, and utensils that are designed for those with limited dexterity; and to provide “finger foods” as often as possible. Thus, it is important to consult a dietitian, for personal help. The dietitian will assess the reason for the poor nutrition and design an eating plan that overcomes the limitations. For extra calories, add nourishing between-meal snacks, of about 100-200 calories. These should be low in protein -- fresh fruit or juice; a fruit smoothie made with soy or rice milk, vegetables, rice cakes or bread with a little mayonnaise or a teaspoon of peanut butter, salads. Generally, it’s a good idea to begin slowly, adding only 200-400 calories a day and increasing gradually, so as not to stress the system._________________Best regards, Kathrynne Holden, MS, RD

Breathing with PD

I understand there are so far few articles touch on subject on Breathing with PD patients.There are many types of breathing in which the rhythm, rate or characterise abnormal. Kindly elaborate the types of breathing with some of the PD patients.Breathing is the alternation of active inhalation of air into the lungs through the mouth or nose with the passive exhalation of the air. As PD patients have stiffness muscles and slowdown movement some PD have reduction in nasal airflow with Breathing. They have cyclical variation in the rate, which becomes slower until breathing stops for several seconds before speeding up to a peak and then slowing again.It occurs whether sensitivity of the respiratory centres in the brain is impaired .Therefore most PD die on pneum0nia disease \

TEO Kim Hoe
April 1, 2007 8:41 AM

words by Dr.Kathrynne Holden

Dear Teo,

It is a sad story, indeed. Some denial initially is understandable, also seeking a second, or even third opinion from other doctors. At some point, though, the most helpful and positive action is to begin self-education with regard to PD; to understand its nature, and how best to manage it and stay healthy and productive. I know of many people who continue to pursue their hobbies -- playing golf, running marathons, quilting, painting -- because they keep a positive attitude and are very proactive with regard to their health. I hope you will always remain a good example for us all, and for your family as well. Best regards, Kathrynne Holden, MS, RD>>> -

words by Dr.Kathrynne Holden

Dear Teo,

You're right, there is very little information or research on the problems caused by breathing difficulties in PD.

I believe that in some cases dystonia (abnormal contraction of the muscles) of chest muscles can lead to abnormal breathing.

But I have seen little to no research on breathing problems or their causes.However, there have been a number of studies of the many benefits of exercise for those with PD, and exercise affects breathing. Tai chi, walking, stretching, and other forms of exercise have all been shown to make great improvements in health; and I am certain that in part this is due to improved breathing.Thank you for bringing this to our attention, it's a very important point.Best regards,Kathrynne Holden, MS, RD--

PD and Medication

Some PD patients do not acknowlege that they are PD after they are diagnosed by Movement Disorder specialists.

They do not take the PD medications as there are some sideffects.

They do not want to learn how to manage the diseases to slowdown from its progression.

As PD symptoms aggravates every 3 to 5 years it is too late for them to be normal

Exercise

Post subject: Exercises and Movement

PD is a muscles movement disorders.

It is a chronic neurological illness i.e. not going away"

PD patients are different from what we define them self as "patient" i.e only during acute, self-limited illness or injury that temporarily impact their lives as an inconvenience or comfort.

The major functions of muscles are to produce movements of the body, to maintain the position of the body against the force of gravity,to produce movements of structures inside the body, and to alter pressures or tensions of structures in the body.

The symptoms of muscles disorders are as follows:

1. Bradykinesia i.e. slowness of movement

2. Resting tremor i.e shaking,either one or both side

3. Rigidity i.e. marked stiffness 4.Decreased arm wing on one or both side 5. Problems with walking and balance i.e. freezing being unable to initiate a step forward 6. Small, cramped handwriting

7. Masked face i.e. reduced facial expression 8. Low voice i.e not clear Therefore PD patients have to choose an exercises that gets their muscles moving i.e stretching, in order to overcome the muscles stiffness, rigidity and slow movement.A physiotherapy, doctor or personnel trainer may be consulted as how to start on an exercise routine. When doing these exercises patients should not experience an pain.

What are the type of exercises suitable for PD patient?

Who do you prefer to start an exercise routine a personnel trainer or physiotherapy? What are the different between both of them?

Who is more helpful for PD slowdown progression?

Teo Kim HoeBack to top

Dr. OkunJoined: 19 Jan 2007Posts: 0Location: University of FloridaPosted: Tue Apr 10, 2007 9:32 am Post subject:

We believe stretching and exercise is important however we do not have any studies to recommend regimens. I would say that aerobic exercise (walking, jogging) with stretching and light weights are best. 1/2-1 hour a day and you should break a sweat and increase your heart rate. Also, eat healthy.

Michael S. Okun, M.D

PNF(proprioceptive neuromuscular facilitation}

Posted: Thu Apr 12, 2007 7:11 pm

Post subject: PNF (proprioceptive neuromuscular facilitation]

There are exercises that the PD patients may do their own to maintain flexibility.

Although it depends on each limitation and capabilities'

Can you recommend what are the simple exercises for the PD patients should not experience any pain and done it slowly and in a controlled manner?

It is to help them to improve their mobility, stability and flexibility and relieve their muscles/limb stiffness, difficulty for swallowing, breathing, communication,walking and sitting posture.

What are about some parts of PNF stretching exercises?

Thanks

Teo Kim Hoe



Post subject:A good stretching and exercise routine is a great idea in PD where exercise is like a drug. It is not known if one is better than another---yet to be studied._

Michael S. Okun, M.D.

Tuesday, November 27, 2007

my family photo

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Exercise and Movement

Mon Apr 09, 2007 10:33 am Post subject: Exercises and Movement

PD is a muscles movement disorders.


It is a chronic neurological illness i.e. not going away" .

PD patients are different from what we define themself as "patient" i.e only during acute, self-limited illness or injury that temporarily impact their lives as an inconvenience or comfort.

The major functions of muscles are to produce movements of the body, to maintain the position of the body against the force of gravity,to produce movements of structures inside the body, and to alter pressures or tensions of structures in the body.

The symptoms of muscles disorders are as follows:

1. Bradykinesia i.e. slowness of movement 2. Resting tremor i.e shaking,either one or both side 3. Rigidity i.e. marked stiffness 4.Decreased arm wing on one or both side 5. Problems with walking and balance i.e. freezing being unable to initiate a step forward 6. Small, cramped handwriting 7. Masked face ie. reduced facial expression 8. Low voice i.e not clear

Therefore PD patients have to choose an exercises that gets their muscles moving i.e stretching, in order to overcome the muscles stiffness, rigidity and slow movement.A physiotherapy, doctor or personnel trainer may be consulted as how to start on an exercise routine. When doing these exercises patients should not experience an pain.

What are the type of exercises suitable for PD patient? Who do you prefer to start an exercise routine a personnel trainer or physiotherapy? What are the different between both of them? Who is more helpful for PD slowdown progression?

Teo Kim Hoe
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Dr. OkunJoined: 19 Jan 2007Posts: 251Location: University of Florida
Posted: Tue Apr 10, 2007 9:32 am Post subject:

We believe stretching and exercise is important however we do not have any studies to recommend regimens. I would say that aerobic exercise (walking, jogging) with stretching and light weights are best. 1/2-1 hour a day and you should break a sweat and increase your heart rate. Also, eat healthy._________________

Michael S. Okun, M.D.

Monday, November 26, 2007

Constipation and Parkinson's

Here is a copy of what we give our patients when they are constipated:

Definition Constipation is an alteration in stool frequency, consistency, and/or passage of stool.

The normal pattern of bowel movements can and will vary by 1 to 3 days.

A stool-voiding pattern of every day or every other day is encouraged.

II. Causes A. Change in diet or activity B. Medical reasons: cancer, pregnancy, hemorrhoids, neurological disorder, muscular disorders, intestinal inflammation

C. Medications: narcotics, sedatives, antacids, antispasmodics, iron supplements III. Treatment Management A. Fluids - Drink at least 6 to 8 – 8 ounce glasses of fluids per day. This is all inclusive (everything you drink like water, tea, coffee, juice, colas, etc.), but water is best, and we encourage you to drink primarily water. Bladder patients should reduce fluid intake after the evening meal. B. Activity - Exercise and increased activity will assist in establishing regular bowel patterns. C. Diet - Include fiber-rich foods: bran, whole-grain breads – oat, rye, fruits, vegetables (leave peel on), whole-grain cereals, oatmeal, pasta, nuts, popcorn, and brown rice. Daily recommended fiber intake: 20 – 30 grams Natural Recipe Miller’s (unprocessed wheat) Bran* 1 cup Applesauce ½ cup Prune Juice ¼ cup Mix these ingredients together and refrigerate. Replace the mixture each week. Take 1 – 2 Tablespoons daily for one week for desired results. If needed, you may increase dose by 1 Tablespoon each week. Stool frequency and gas may increase the first few weeks but will usually adjust after one month. *Miller’s Bran is unprocessed wheat bran. This can be purchased at most large grocery stores (Cub Foods, Kroger, Ingles, etc.) and is sold with either the hot cereals or flours and baking goods. The most commonly found brand name is Hodgson Mill and comes in a brown 14 oz. box. Miller’s Bran can also be purchased in bulk at health food stores. You can also sprinkle bran on food to supplement your fiber intake. D. Bowel Clean Out The bowel clean out should be done before starting on the bowel program that is outlined for you by your physician. This should be done on a day when you will be at home all day to minimize the risk of accidentally soiling your clothes. The bowel clean out is a two-part procedure. In the morning take 2 oz. Milk of Magnesia and follow that with a hot drink. This could be hot coffee, hot tea, or even hot broth. This helps to stimulate the bowel and enhance the effects of the Milk of Magnesia. That evening, after dinner, give yourself a Fleets enema. This helps to make sure the rectum is empty. You should be able to rest through the night without worry or discomfort. This procedure can be repeated the next day if needed. E. Medications 1. Bulk producing: Metamucil, Fibercom, or Citrucel. Mix 1 -2 Tablespoons in juice or water and take by mouth 1 to 2 times daily. - Adds consistency or bulk to the stool and facilitates water retention in stool. - Must take adequate fluids by mouth to avoid causing constipation. 2. Stool Softeners: Colace. Soften stool by facilitating the admixture of fat and water (detergent activity). Do not use with mineral oil. Take 1 tablet by mouth 1 to 2 times daily. 3. Combinations: Pericolace. Mild stool softener and laxative combined. Take 1 by mouth 1 to 2 times daily. 4. Irritant/Stimulant: Products containing Senna. Laxative with direct action on the intestinal mucosa and the nervous plexus of the bowel. 5. Suppositories: Glycerin, Dulcolax. Inserted rectally every other day or when needed. Stimulates rectum and assists with evacuation. I hope this helps!_________________Hubert H. Fernandez

Sunday, November 25, 2007

Thank you for your explanation of the PD as there is no treatment of the disease but there is a way to slowdown progression i.e medication and exercises. The doctor has to monitor, adjust and optimize the effectiveness of medications.

Teo Kim Hoe
Dear Kim

Thank you for making some excellent points. In some people, PD can be very difficult to diagnose, and indeed, many people have been mis-diagnosed in the past.

It is very important to find a good neurologist and physical therapist (and dietitian!) to help maintain good health.

Best regards,

Kathrynne Holden, MS, RD

words by Dr.Kathrynne Holden

We do not honestly know the specific answers to your questions. PD is a progressive neurodegenerative disease. Presumably upregulation of some chemicals early in the course when more cells are preserved would likely have more benefit. I do not honestly think exercise can stave off PD, but there is a notion it can positively influence the course. I would therefore adjust medications and continue daily exercising if you can.

words by Dr.Kathrynne Holden

Dear Teo,

Your faithful exercise regime over twenty years has stood you in good stead – and is still doing so. Keeping the muscles strong, the bones dense, and the balance and posture supple and erect allows for good gait, better and deeper breathing, and more stamina. Very few folks of your age, even those who don’t have PD, are able to do so well, because most of us haven’t practiced such a good and healthful regime all our lives. Advancing age does slow us all, however, sooner or later. In your case, much later than for most people. And, PD itself gradually progresses, and this adds to the slowing and tiredness. You are doing most remarkably well in managing your PD symptoms; however, it nevertheless may be time to discuss medications with your neurologist. This is outside my scope of practice, you must talk with your doctor regarding type, amount, and/or timing of medications. It is very possible that a slight change in the amount of Sinemet might be just what you need. Write back and let us know._________________Best regards, Kathrynne Holden, MS, RD --

Prudent diet associated with reduced risk of PD

Posted: Wed Nov 14, 2007 1:27 pm Post subject: News: Prudent diet associated with reduced risk of PD

Dear Friends, No diet has been proven to prevent PD, nor to slow its progression. The following study shows an association between a Mediterranean-type diet and lowered risk for PD; this is not proof, but it is encouraging, and certainly is a wise choice. Best, Kathrynne ======= Eating More Fruits, Vegetables, Legumes, Whole Grains, Poultry, and Fish May Reduce the Risk of Parkinson's Disease Reference: "Prospective study of dietary pattern and risk of Parkinson disease," Gao X, Chen H, et al, Am J Clin Nutr, 2007; 86(5): 1486-1494. (Address: X Gao, Department of Nutrition, Harvard School of Public Health, 655 Huntington Avenue, Boston, MA 02115, USA. E-mail: xgao@hsph.harvard.edu ). Summary: In a prospective study involving 49,692 men and 81,676 women, results indicate that greater adherence to dietary patterns characterized by a high intake of fruit, vegetables, fish, poultry, legumes, whole grains, and nuts, a low intake of saturated fat, and a moderate intake of alcohol may reduce the risk of Parkinson's Disease (PD). Using principal components analysis, two dietary patterns were identified: 1) prudent dietary pattern, characterized by high intakes of fruit, vegetables, legumes, whole grains, and fish; 2) Western diet, characterized by higher intakes of red and processed meats, sweets and desserts, french fries, and refined grains. After adjusting for potential confounders, subjects in the highest quintile of adherence to the prudent dietary pattern showed a 22% reduced risk of PD, compared to subjects in the lowest quintile. Similarly, using the Alternate Healthy Eating Index (AHEI), subjects in the highest quintile of AHEI score, suggesting the highest diet quality, showed a 30% reduced risk of PD, compared to subjects in the lowest quintile. Furthermore, using the alternate Mediterranean Diet Score (aMED), the highest quintile of aMED score was associated with a 25% reduced risk of PD, compared with the lowest quintile. Thus, the authors of this study conclude, "Dietary patterns with a high intake of fruit, vegetables, legumes, whole grains, nuts, fish, and poultry and a low intake of saturated fat and a moderate intake of alcohol may protect against PD." http://www.vitasearch.com/CP/weeklyupdates/_________________Best regards, Kathrynne Holden, MS, RD

Saturday, November 24, 2007

Why PD patient has problem with speech?

Why PD patient has problem with speech? He has soft voice i.e. not strongenough to be listenedOver 89% of people with PD have difficulties with speech and voice. The symptoms that occur first are changes in voice including soft voice, monotone, and sometimes hoarseness or breathiness. These changes can make it difficult for a person with PD to be heard and understood. There is a speech therapy program that has been very successful in improving communication in people with Parkinson disease called LSVT/LOUD! I have provided some additional information below about the speech treatment, how to find certifed clincians, and what you should expect if you were to receive LSVT/LOUD. The most important thing is to do something about improving voice/speech NOW. Communication is a vital element in self-confidence and is something that you CAN do something about.How to locate LSVT Certified Speech Therapists:1. Go to the LSVT Website at http://www.lsvt.org/. 2. From the opening page, click on the link, "Go to LSVT Website". 3. There are series of links on the left hand side of the webpage - click on the link, "Locate Certified Clinicians."4. Accept the disclaimer by clicking the "I agree" button5. From the map or pull down menu, select your country6. Next select your state7. A list of clinicians in your state will appear with the therapists contact information.If you have any difficulty with the website, email a request for clinicians to info@lsvt.org. Asking doctor for referral and prescription:If you are experiencing any changes in your speech or voice, be sure to tell your doctor. Ask for a referral for LSVT speech therapy. It is best if the physician can write a prescription for, "Speech evaluation and treatment utilizing the LSVT 4 days/week for 4 weeks, 50-60 minute sessions."If you have not noticed changes in your speech, but a spouse, caretaker, or friend has - pay attention to their comments. One aspect of the speech disorder in PD is that the person with PD is often "unaware" of the changes in speech or voice. He or she feels as though they are speaking loudly enough, but others can not hear or understand them. The sooner you get a speech evaluation and start speech therapy - the better!You can provide your doctor with information about LSVT. Information is available (reference list of published data) on the LSVT website at http://www.lsvt.org/.Insurance reimbursement:LSVT has been successfully reimbursed by many insurance providers and Medicare. There are certain provisions: . speech therapy must be included on your policy . if you have Medicare, you will need to receive LSVT at a Medicare provider facility (typically hospitals, outpatient rehabs, etc.). Some private practice speech therapists are unable to bill Medicare for services. . you may need a prescription for speech evaluation/therapy from your primary care physician Pearls for receiving best therapy:1. Make sure your speech therapist is certified in LSVT. The LSVT Training and Certification is a special 2-day training course that speech therapists attend in addition to their training as a speech therapist. There is a list of LSVT Certified speech therapists on the website http://www.lsvt.org/.2. Ask your speech therapists:How many patients have you treated?What are your typical outcomes?How long ago were you certified?3. Beware if a therapist offers a "modified" LSVT program. There is no such thing as modified LSVT. Any changes to the standardized LSVT protocol are NOT supported by research data and efficacy outcomes. IF you receive LSVT, you will get the following (this is the same everywhere in the world - there are not modifications): Components of LSVT therapy. Treatment will consist of 4 days of therapy a week for 4 weeks.. Treatment session will last 50-60 minutes. Treatment will be delivered individually.. The first half of the session will be spent on 3 daily tasks:o Sustain "ah" with increased loudness as long as you can (minimum 15 repetitions)o Sustain "ah" while going high/low in pitch - hold for 5 seconds (minimum 15 repetitions for high and 15 repetitions for low)o Repeat a list of 10 self-selected functional phrases 5 times each session (these phrases NEVER change). The second half of the session will be spent on a speech hierarchy:o Week 1 - words and phraseso Week 2 - sentenceso Week 3 - readingo Week 4 - conversationThe LSVT clinician will encourage you to bring in material for speech practice that is meaningful and interesting to you. This material will change everyday of therapy. The entire second half of the session you will be talking and practicing your LOUD voice. If your speech therapist has done a good job - you will feel tired at the end of the session. . Homework:You will have homework exercises to practice everyday of the entire month of speech therapy. On days you have speech therapy (e.g., Mon-Thurs), you will practice one other time a day for 5-10 minutes. (completing daily tasks and hierarchy exercises)On days you don't have speech therapy (e.g., Fri - Sun), you will practice twice a day for 10-15 minutes (completing daily tasks and hierarchy exercises).. Carryover exercises:Everyday of the entire month of speech therapy (Mon-Sun) you will have a carryover assignment. This is an assignment to use your LOUD voice with another person outside of the therapy room. The clinician will work with you to decide on a very specific task in which you will use your LOUD voice - as loud as you practice in the treatment room - in a real life situation. These exercises help a person with PD realize, that what feels and sounds too loud to them is actually within normal limits. The LSVT clinicians will make you accountable EVERYDAY for doing your Homework and Carryover exercises. The daily homework and carryover exercises are an essential part of the treatment program, and must be completed daily. Improving speech and voice in PD is not easy. It takes a commitment to the LSVT exercises and tasks in therapy. The benefit is priceless - improved communication subscribed to speechclinicians as: tkh1234@streamyx.comTo unsubscribe send a blank email to leave-speechclinicians-85024Q@forum.parkinson.org

words by Dr.Kathrynne Holden

Dear Teo,

I too am very sorry that information, resources, and neurologists specializing in PD are all so scarce. I very much hope that this news will spur more research, and cause more physicians to become aware of PD and the need for accurate diagnosis. Your posts have made me aware of the great need that exists in your area of the world, and doubtless other countries as well.

Best regards,

Kathrynne Holden,

B Vitamins

I think the B vitamins are a very good idea for folks with PD; a number of studies have found PD patients with low levels of several B vitamins.

If you are taking levodopa, however, I would not take more than 25 mg of B6, because it can prevent levodopa absorption.

Some people are sensitive to as little as 10-15 mg of B6.In general, your supplements seem very good, with just a couple of possible exceptions.I would not take too much vitamin A; it has been shown to cause bone thinning if taken in excess. The US recommended amount for adult males is 900 micrograms per day; for adult women 700 micrograms per day. The safe upper limit is considered to be 3000 micrograms per day, for all adults.

Yoga

depends what type of YOga she is doing. It is OK for 45 minities if she > is learning Yoga Meditation.>> She has learned from the experienced yoga teacher to monitor her stiffness > and rigidity muscles. She is not suitable for her to do in the class and > is preferable to be one to one in the class. She will not feel tired as > some yoga postures are not suitable for her. It is OK to learn Yoga two > days in a week. Why don't try Pilate and Rolfing massage? She will find > benefitable.>> Teo Kim Hoe\\
Is it helpful for the PD patient to do blood test i.e Micronutrients andHormone thereapy?

Mircronutrients i.e. Lab. Evaluations on Antioxidant, Vitamins andMinerals.*

Dear Friend

,I think it's very important to establish a baseline for iron, homocysteine, B12, B6, folate, and riboflavin. Regarding hormones, that would be up to an endocrinologist; however, there have been some studies regarding both estrogen and testosterone as they relate to women and men with PD, and here, you might address your question to "Ask the Doctor." Dr. Okun has done research in the area of testosterone. Go to:http://www.parkinson.org/
PARKINSON'S DISEASE AND EXERCISE

Parkinson's disease (PD) affects many aspects of a person's daily life. The condition can make it difficult to initiate movements or maintain balance. Lack of dexterity can make fine movements such as doing up buttons difficult.

Walking may be impaired so that the person no longer wishes to get up and walk for fear of falling. Exercise cannot cure these problems but it is thought to minimise their effects on the individual.

The basis of good health is a positive attitude. One way to be positive in a realistic way is to have good nutrition and physical fitness.

The aims of exerciseThe main aims of exercise are to obtain and maintain as high a level of function as is possible. This can be achieved by:
encouraging motivation and will-power; you must resist the temptation to do nothing;
constant practice of functional activities such as dressing, eating, showering and walking. Make them a part of your daily routine so as to keep up the activity.

Write your exercise time in an appointment book, so it is given equal value with other appointments;
instruction for the family so that they can help when needed. This should, however, be only in activities that you cannot perform alone. Although relatives and carers may think they are helping, too much help can mean loss of independence;
exercising using full rhythmic movement, which will utilise the joints as well as the muscles.

Exercise should become a part of your normal daily routine. If you can manage it, 15 minutes a day is the minimum amount of time that should be spent on formal exercise, sport or hobbies. You should rest at any time if you become tired, as over-exertion will only lead to increased tremor and rigidity and excessive fatigue.
The benefits of exercise

Exercise can benefit all people, including those with PD. It assists by:
increasing the range of movement and helping prevent deformities of the joints;
stretching muscles;
strengthening muscle groups, improving posture, balance and movement patterns;
improving the initiation, rhythm and co-ordination of movement and hence safety when mobile;
helping maintain fitness of heart and lungs by improving circulation and rate and depth of respiration;
actually making people feel better more alert and fitter, leading to more awareness of care of the body. To avoid fatigue, the best time to exercise is in the morning when your body is rested and ready for action. Look for ways to make your exercise time fun, such as joining an exercise group or involving family members. Exercising to music is another excellent way to maintain enjoyment and motivation.
Australian Parkinson's Associations have an exercise video for loan or purchase, produced specifically for people with PD.
General exercisesThese are useful to maintain general fitness.
Walking (stretch calf and hamstring muscles first) improves fitness and feelings of well-being.
Fear of a new terrain may cause problems.
Increase the step size; a larger step may help to straighten up.
If slowness is a problem, count to help keep the rhythm.
Swing arms where possible.
Shoes should have good arch supports and low heels.
Walk on a flat surface with no obstacles.
Exercise in water (aquarobics, hydrotherapy).
Cycling, bowls, gym, golf and dancing are good for aerobic exercise.Before any aerobic programme is commenced, check for heart, blood pressure or other medical limitations.
Specific exercisesThese are included as a guide to the kinds of exercises that are available. Consult a physiotherapist to help develop your own exercise regime or if you have any problems. Exercises should be stopped if you feel pain.
Go slowly, gradually increasing direction, intensity and frequency.
Face
Make faces in the bathroom mirror, such as surprise, frown, smile, bad smell, 'don't know' expressions.
Head and shoulders
To loosen the tightness in your neck, pull yourself upright and raise your hands over your head.
Turn your head to the left and look over your left shoulder, then turn your head to the front. Turn and look over your right shoulder, then back to the front.
Look up to the ceiling. Tilt your head back so that your chin is pointing towards the ceiling. Now look straight ahead. Tilt your head forward so that your chin is on your chest. Bring your head up to the front position again. (Avoid this exercise if it makes you feel dizzy.)
While looking to the front and keeping your shoulders still, tilt your left ear to your left shoulder. Lift your head up again. Then tilt your right ear to your right shoulder, and bring your head back again.
Arms and trunk
Sit with hands clasped, then lift your arms as far as possible. Slowly lower your arms back to your lap.
Sit holding the left side of the chair with your left hand. Raise your right arm and stretch it behind you and then back to your side. Repeat on the other side.
While seated, raise your arms in front of you to above your head, then lower them to your sides again.
Place your hands behind your head and push your elbows as far back as possible (taking care not to pull head forward). Hold for 2 seconds and relax.
With hands on hips, lean forward minimally, slowly return to upright position and then lean backward. Use this to help maintain a good posture.
Place your hands on your hips and reach to the right as far as possible. Return to an upright position then lean over to the left.
With hands on hips, tip your pelvis forwards (i.e. arching the lower back a little) and back, then side to side.
With hands on hips, rotate to the right, return to the front and then rotate to the left.
Hands and wrists
Bend your elbows until your hands hit your shoulders, then straighten them out in front of you. Relax.
With arms at side and elbows at right angles, alternately turn your palms up and down as far as possible. Keeping the same position, alternately bend your wrists up and down as far as possible.
Holding your hands flat on your lap, make a fist with your left hand, then relax it. Repeat with your right hand.
Legs
While sitting, tilt your pelvis to one side. Leaving your weight on that side, move the other pelvis up and forwards. Continue 'walking' your thighs forwards then back in the chair.
While sitting, straighten your leg and move your foot in a large circle; repeat. Lower your leg and repeat with your other foot.
Again while seated and keeping your knees bent, swing your foot into the middle and out to the side.
Point your foot down while curling your toes, then bring your foot upwards, your toes toward you.
March, lifting your knees as high as possible.A properly directed exercise programme is essential for people with PD. It will enhance balance, co-ordination, motivation and the effects of medication.
Don't overdo things. If you become dizzy, faint, short of breath or have chest pain, stop and call your doctor.
Dear Teo,>

I did not realize there were so few Parkinson specialists in your country; > that must make it even more difficult to get an accurate diagnosis of PD. > Good for you for taking such an active part in your own health care -- you > have studied and researched PD and learned the best ways to fight it and > stay healthy, and minimize the symptoms. That will certainly stand you in > good stead!>> Best regards,> Kathrynne Holden, MS, RD
Dear Friend,

You make excellent points - it can be very difficult to diagnose PD, especially in the earliest stages, and some people do need to consult more than one physician.

Also, exercise, as you point out, is of the utmost importance in maintaining good physical condition and helping with constipation.It sounds as though you have exceptionally fine doctors and therapists, and I'm sure many of us would be very interested in more information on your experiences, if you care to share this with us.

Best regards,

Kathrynne Holden, MS, RD

Friday, November 23, 2007

Relief for those with Parkinson's disease
New Straits Times via NewsEdge Corporation :

MORE than 30 Malaysians suffering from Parkinson's disease are now living a better quality of life due to a surgical procedure called deep brain stimulation.
Parkinson's disease is a disorder of the nervous system that causes muscles to become weak and the arms and legs to shake. The deep brain stimulation procedure, available in Malaysia since 2004, provides a relatively safe treatment option with a high degree of success.
Patients who have undergone the procedure have reported a 60 to 90 per cent improvement in their movements and they also need to take a lower dosage of medicine.
But this procedure does not come cheap - the minimum cost is RM80,000 and there is also long-term maintenance.
"Risk is minimal but one must take consider the benefits, especially that of a significantly better quality of life," said Dr Chew Nee Kong, a neurologist at Pantai Cheras Medical Centre.
Not every patient is a suitable candidate and those seeking this treatment should be properly evaluated beforehand, cautions Dr Chew.
"I would advise patients to seek relief through the available drugs first. Resort to surgery after 10 years or so when the drugs are offering little or no extended benefit." This situation occurs when the disease has progressed to a point that it begins to pose severe physical disabilities and drastically reduces activities of daily living, including walking or performing basic chores.
Studies have shown that the patients begin to exhibit attenuation or tolerance to drugs after prolonged periods of medication (about five years), which results in further impairment in their quality of life. "While the procedure has significantly improved dyskinesia and the quality of life, it is however not a cure." "The benefits of the surgery are generally sustained for up to seven years after surgery. It does not cure the disease or stop the progressive loss of brain cells."
<>

Believe and Trust

Believe and Trust?

Comments from a forum member; with thanks,

Kathrynne Holden

PD is a chronic and progressive disease.The patients have to learn to trust and believe on physical trainers and doctors that they can help them to slowdown the disease from its progression.

The patients have to learn on how to overcome the side effect of the PD Medication.

Regularly medication and physical exercises with the trainer i.e muscles stretching to relief movement stiffness and rigidity are important.

PD patients have different symptoms and they vary from one people to other.It makes doctors have difficulty to prescribe the medicines.

It is a movement and coordination disorders.As the result they have constipation , poor vision , stiffness face, stoop body postures, soft voice, breathing and swallowing.

The patients would not die on PD disease but die on liver or kidney infection or pneumonia , a fatal complication disease.

Yoga is good for early parkinson's patient

Yoga is good for early parkinson's patient.

The yoga teacher should be well trained on how to help the PD patients.It is too dangerous for the PD patients to do certain body postures that are not suitable for them

.It is a muscle stretching and mediation exercises that help to relax and relief them from muscles stiffness and rigidity.It also helps you to balance your physical stability and mobility.It helps you to breathing and relaxing your anxiety, stress and depression from work.It is a part of respiration.As some of PD have breathing in which the rhythm, rate or character is abnormal. It affects your voice, swallowing and appetites of the food.Besides Yoga, Pilate is also good for PD patients.

words by Dr.Kathrynne Holden

Kathrynne,

I was about to "register" for your new Forum, when I decided to go back =andread the only other Reader Input that you posted today. It was the oneabout another Reader's dilemma regarding her husband's balance. The =VERYWISE answer was from David P, of course. =20I also have noticed that stopping and slowly trying to figure out how tobalance my body has given me much better confidence in how to navigatemyself during these past few days, wherein the weather has been =slightlyhorrendous with snow storms, ice build--ups, and what have you. Talk =aboutstressful pushing of my body's capabilities! This is after thirteen =yearsof suffering with PD! Please note, that I had three plus wonderful, postsurgical years in the Spheramine Protocol Clinical Trial (Being Patient =No.1 in the Stage 2 Trial.) The benefits are either wearing off or I amoverloading my system with stress. So, I have begun backsliding a bit =andam now having the intermittent freezing again. Also a bit of imbalanceagain.=20I find that David P.'s suggestions are very wise. Also I believe that =Teo'speriodic suggestions have great wisdom in them! His are ="observational,"his having PD himself. Like me, he only offers his experiences of whatseems to work for him.=20David P. has taken me on as a friend /patient of sorts. He is one of =themost non-aligned thinkers I have had the luck to run in to. Like Teo, =PatW., and a few others whom I have had the good fortune to meet thru yourDigest, my life has been greatly benefited! That is why I end my =missivesto you with "God Bless." I am not a religious fanatic, but I do know =how tosee the hand of Godliness in everybody's vectoring around you, dearKathrynne.So, thanks for the "Forum." I am, like a wobbly Don Quixote, riding off =tosee how to utilize your new base for informational thoughts that may, noWILL, help other sufferers climb back up out of this hell hole we arewallowing in. It is not an ILLNESS. It is a condition that could bereversible. Like the Pritikin Promise gave hope and remedy to those whosuffered severe angina, there is a solution to our condition. I am morefirmly convinced than ever that the root cause of our c condition isPeripheral Arterial Disease, like with leg cramps. But what it does to =us,with our particular DNA weakness/vulnerability is that the resulting =oxygendepravation starves our neuron cells. Therefore, no dopamine. All stem =celladvances will only provide a temporary fix. It is blending the infusion =ofthe stem cells, PLUS a reworking of daily regimen that will keep our =motorsin good condition. (Note, even if Glenn's amazing IV drip of umbilical =cordfluids gives him amazing relief of symptoms, it will ultimately play =out,without a supplemental repair of the toxins that originally triggered =hisPD. The Pritikin Promise only worked/works for the followers whoworked/work the program religiously.As a society, we have a lot of reorganizing to do re: our daily livinghabits vs. choosing new habits that are more beneficially supportive of =ourwell being. It is certainly a wonderful time to be alive!=20God Bless, Kathrynne, and Teo, et al... See you on the Forum!

words by Dr.Kathrynne Holden

Dear Teo,

These are very good points. Many times, I have noted that folks with a pro-active attitude who seek knowledge and understanding of PD and use good judgment with regard to diet, exercise, and medication regime are far healthier, and happier.Best regards,Kathrynne Holden, MS, RD--

Wednesday, November 21, 2007

My experience with Parkinson's

I wish to relate my encounter with PD disease symptoms for the past of 10 years.

I understand we have so far 4 movement disorder specialists in Singapore i..e 2 in Tan Tuck Seng Hospital, 1 in General Hospital and other goes Private practice. We have only one in Malaysia.

Therefore all the specialists are fully booked and have to make appointment with them for two to three weeks.

All the neurologist s are not specialised in movement disorders and my PD yet to be detected. I was told that I am growing older and my movement is slowdown.

It was until last year I went to Bumrungrad hospital Bangkok for my physical checkup and was told I have PD disease. I am in stage 2. I even went for MIR test no sign yet of PD disease. The doctor prescribed me PD medicine.

I learn on how to control my PD and overcome the side effect of PD medication by surfing websites.

As exercises are important for PD patients I join gym centre and taking part stretching classes i.e yoga, pilate,cardio training, spinning, body combat and pump.

I spend 2 to 3 hours daily in the gym. I was told that I have exercise cell by my personnel trainers and not difficulty for me to continue the stretching exercises for hours.It is important for the PD patients to have PT training as it helps you to do stretching to relieve your stiffness and rigidity muscles.

Besides I do rolfing i.e.structural integration therapy one a week. I do reformer pilate too one a week.

I am at last overcoming and controlling my PD and be normal again after one year workout and medication. Thank Lord.

My doctor told me I am an exceptional patient to be normal.and was pleased with me. I continue my PD medicine and routine checkup as PD is a chronic and progressive disease. I hope my article is helpful for PD patients and encouragement for them to follow.

Teo Kim Hoo

Why PD patient has problem with speech?

Why PD patient has problem with speech?

He has soft voice i.e. not strong enough to be listened Over 89% of people with PD have difficulties with speech and voice.

The symptoms that occur first are changes in voice including soft voice, monotone, and sometimes hoarseness or breathiness. These changes can make it difficult for a person with PD to be heard and understood.

There is a speech therapy program that has been very successful in improving communication in people with Parkinson disease called LSVT/LOUD!

I have provided some additional information below about the speech treatment, how to find certifed clincians, and what you should expect if you were to receive LSVT/LOUD.

The most important thing is to do something about improving voice/speech NOW. Communication is a vital element in self-confidence and is something that you CAN do something about.How to locate LSVT Certified Speech Therapists:1. Go to the LSVT Website at http://www.lsvt.org/. 2. From the opening page, click on the link, "Go to LSVT Website". 3. There are series of links on the left hand side of the webpage - click on the link, "Locate Certified Clinicians."4. Accept the disclaimer by clicking the "I agree" button5. From the map or pull down menu, select your country6. Next select your state7. A list of clinicians in your state will appear with the therapists contact information.If you have any difficulty with the website, email a request for clinicians to info@lsvt.org. Asking doctor for referral and prescription:If you are experiencing any changes in your speech or voice, be sure to tell your doctor. Ask for a referral for LSVT speech therapy. It is best if the physician can write a prescription for, "Speech evaluation and treatment utilizing the LSVT 4 days/week for 4 weeks, 50-60 minute sessions."If you have not noticed changes in your speech, but a spouse, caretaker, or friend has - pay attention to their comments. One aspect of the speech disorder in PD is that the person with PD is often "unaware" of the changes in speech or voice. He or she feels as though they are speaking loudly enough, but others can not hear or understand them. The sooner you get a speech evaluation and start speech therapy - the better!You can provide your doctor with information about LSVT. Information is available (reference list of published data) on the LSVT website at http://www.lsvt.org/.Insurance reimbursement:LSVT has been successfully reimbursed by many insurance providers and Medicare. There are certain provisions: . speech therapy must be included on your policy . if you have Medicare, you will need to receive LSVT at a Medicare provider facility (typically hospitals, outpatient rehabs, etc..
Some private practice speech therapists are unable to bill Medicare for services. . you may need a prescription for speech evaluation/therapy from your primary care physician Pearls for receiving best therapy:1. Make sure your speech therapist is certified in LSVT. The LSVT Training and Certification is a special 2-day training course that speech therapists attend in addition to their training as a speech therapist. There is a list of LSVT Certified speech therapists on the website http://www.lsvt.org/.2. Ask your speech therapists:How many patients have you treated?What are your typical outcomes?How long ago were you certified?3. Beware if a therapist offers a "modified" LSVT program. There is no such thing as modified LSVT. Any changes to the standardized LSVT protocol are NOT supported by research data and efficacy outcomes. IF you receive LSVT, you will get the following (this is the same everywhere in the world - there are not modifications): Components of LSVT therapy. Treatment will consist of 4 days of therapy a week for 4 weeks.. Treatment session will last 50-60 minutes. Treatment will be delivered individually.. The first half of the session will be spent on 3 daily tasks:o Sustain "ah" with increased loudness as long as you can (minimum 15 repetitions)o Sustain "ah" while going high/low in pitch - hold for 5 seconds (minimum 15 repetitions for high and 15 repetitions for low)o Repeat a list of 10 self-selected functional phrases 5 times each session (these phrases NEVER change). The second half of the session will be spent on a speech hierarchy:o Week 1 - words and phraseso Week 2 - sentenceso Week 3 - readingo Week 4 - conversationThe LSVT clinician will encourage you to bring in material for speech practice that is meaningful and interesting to you. This material will change everyday of therapy. The entire second half of the session you will be talking and practicing your LOUD voice. If your speech therapist has done a good job - you will feel tired at the end of the session. . Homework:You will have homework exercises to practice everyday of the entire month of speech therapy. On days you have speech therapy (e.g., Mon-Thurs), you will practice one other time a day for 5-10 minutes. (completing daily tasks and hierarchy exercises)On days you don't have speech therapy (e.g., Fri - Sun), you will practice twice a day for 10-15 minutes (completing daily tasks and hierarchy exercises).. Carryover exercises:Everyday of the entire month of speech therapy (Mon-Sun) you will have a carryover assignment. This is an assignment to use your LOUD voice with another person outside of the therapy room. The clinician will work with you to decide on a very specific task in which you will use your LOUD voice - as loud as you practice in the treatment room - in a real life situation. These exercises help a person with PD realize, that what feels and sounds too loud to them is actually within normal limits. The LSVT clinicians will make you accountable EVERYDAY for doing your Homework and Carryover exercises. The daily homework and carryover exercises are an essential part of the treatment program, and must be completed daily. Improving speech and voice in PD is not easy. It takes a commitment to the LSVT exercises and tasks in therapy. The benefit is priceless - improved communication.

Structural Integration Massage

As a PD patient it is my pleasure and obligation to help the PD patients on how to stretching their movement disorders.

In this connection I wish to recommend that Structural Integration massage is good for the early PD patients'

It will upright your body posture and broaden your shoulder and jaw. You would feel light balance body, free of pain, stiffness and chronic stress.

It relieves your unexpression face with beautiful smile. It is a 10 session courses.

Surf your website http://www.rolfing/ to find out.

Teo Kim Hoe

Tuesday, November 20, 2007

Wrongly diagnosed?

Although large investment are invested 0n Parkinson's there are still shortage of PD neurologists .

There are 5 PD neurologists in Singapore and one in Malaysia.

As the result PD patients were diagnosed by doctors as process of age ageing and are wrongly diagnosed caused the patients aggravate the diseases.

I feel sorry for it.

TEOKIMHOE

Dear Teo,

I am very sorry that information, resources, and neurologists specializing in PD are all so scarce.

I very much hope that this news will spur more research, and cause more physicians to become aware of PD and the need for accurate diagnosis.

Your posts have made me aware of the great need that exists in your area of the world, and doubtless other countries as well.

Best regards,

Kathrynne Holden, MS, RD

Micronutrients and Hormone therapy

Is it helpful for the PD patient to do blood test on Micronutrients and Hormone thereapy?

Mircronutrients include Lab. Evaluations on Antioxidant, Vitamins and Minerals.

TEOKIMHOE

Dear Friend,

I think it's very important to establish a baseline for iron, homocysteine, B12, B6, folate, and riboflavin.

Regarding hormones, that would be up to an endocrinologist; however, there have been some studies regarding both estrogen and testosterone as they relate to women and men with PD, and here, you might address your question to "Ask the Doctor." Dr. Okun has done research in the area of testosterone. Go to:http://www.parkinson.org/click on:- Discussion Forumsclick on:-Ask The Doctor

Best regards,

Kathrynne Holden, MS, RD--


Kim hoe teo

The only one with preliminary positive evidence of the above that I endorse for my patients is Co-Q10.

The others are not solidly proven.

Michael S. Okun, M.D.

A sad story

I wish to relate my family who have three PD sufferers.

Both of my brothers are self denial and angered for their Parkinson's.

They start bargaining with doctors by switching to other field of specialists.

Thus it aggravates their Parkinson's progression.

They at last accept that they are PD sufferers and seek for medications.

It is a sad story

Teo Kim Hoe

Dear Teo

It is a sad story, indeed. Some denial initially is understandable, also seeking a second, or even third opinion from other doctors.

At some point, though, the most helpful and positive action is to begin self-education with regard to PD; to understand its nature, and how best to manage it and stay healthy and productive.

I know of many people who continue to pursue their hobbies -- playing golf, running marathons, quilting, painting -- because they keep a positive attitude and are very proactive with regard to their health.

I hope you will always remain a good example for us all, and for your family as well

Best regards,

Kathrynne Holden, MS, RD

Hypersalivation and Parkinson's

Tue Oct 30, 2007 2:59 am Post subject: Hypersalivation and Parkinson's

I have excessive saliva and drooling from my mouth and it turns thick as a glue locked deep down my throat. I feel uncomfortable and itching in my throat and I feel need to cough and clear my throat all the times. It is not the phlegm in my chest as my x test shown clear. I have gone Pulumonary Functiion Test and the result shown no obstructive airway defict, normal lung volume and normal DLco: inspired volume was less than 90% of best vital capacity and no significant response to bronchiolitis. Kindly elaborate TEOKIMHOE
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lmahlerJoined: 02 Apr 2007Posts: 1
Posted: Mon Nov 05, 2007 9:18 am Post subject: Thick Saliva

Dear TEOKIMHOE, This complaint of excess saliva is common in Parkinson's disease (PD). There has long been a debate in the literature about whether this is the result of overproduction of saliva or decreased frequency and efficiency of swallowing. It looks like the data are pointing to the latter. People with PD have changes in all phases of swallowing that results in a weaker swallow and the bradykinesia associated with PD means they don't initiate a swallow as frequently. In addition, when someone has difficulty swallowing they tend to drink fewer liquids. Sometimes thick mucuous is partially attributed to decreased fluid intake. It sounds like you have already spoken to your physician if you have had a pulmonary function test. It is good to know that your lung function is within normal limits. Now you can turn your attention to strengthening your swallow, consciously swallowing more frequently, and possibly increasing your fluid intake if that is low. A speech-language pathologist can help you with these things so talk to your doctor about getting a referral for a swallow evaluation and appropriate treatment strategies. Good luck to you. Leslie Mahler, PhD, CCC-SLP_________________Leslie Mahler, PhD, CCC-SLP Assistant Professor University of Rhode Island

Saliva, swallowing, and parkinson's

Sat Nov 10, 2007 6:20 am Post subject: Saliva, swallowing and Parkinson's

There are 75-90% people with Parkinson's have speech and saliva drooling disorders . I am one of the sufferers. Drooling causes us inconvenience in public Kindly brief us as follow: Why parkinson's have soft voice and speech? Is it related with the rigidity of movement? Why don't the saliva swallowing automatically instead drooling from the mouth? What is the cause of dry mouth and how to coping with it? Is swallowing problems lead us with pneumonia or other unrelated disease? At present I am taking 1/2 dose Benzhexol 2mg three times a day for my saliva treatment. Best regards TEOKIMHOE
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lmahlerJoined: 02 Apr 2007Posts: 1
Posted: Thu Nov 15, 2007 6:23 pm Post subject: Soft speech in PD

Great question about why people with PD frequently have soft speech. There are several reasons why. The most common perceptual speech characteristics include reduced loudness, monopitch, hoarseness, a breathy voice quality and/or imprecise articulation. These changes are due to changes in muscle function including rigidity, weakness, and difficulty initiating movement. Sensory changes associated with PD contribute to the softer voice also. Most people with PD think they are speaking loud enough when they are, in fact, speaking softly. People with PD have less neural innervation of vocal fold muscles (Baker et al., and Luschei et al.,) that increases breathiness. In addition, there is often small mouth opening and imprecise articulation that can make it more difficult to be understood. As you have experienced first hand, these voice and speech symptoms can have a significantly negative impact on quality of life. The presence of speech and voice disorders can effect communication at work, with family or with friends. Seeking an evaluation with a speech-language pathologist experienced with PD as early as possible is important so you can begin an effective treatment program. I would recommend that you seek an evaluation with a speech therapist who is certified in the LSVT. The LSVT is a treatment that was developed specifically for individuals with Parkinson’s disease, and it has efficacy data showing that it can help people become more understandable. You can find out more about LSVT and find a certified therapist in your area by going to the website at http://www.lsvt.org./ Good luck to you._________________Leslie Mahler, PhD, CCC-SLP Assistant Professor University of Rhode Island

PD a progressive muscles disorders

PD is a progressive and chronic disease.

Unfortunately we have so far do not have any way to check on from it comming to our body.

Human grow older and the chances to have PD are high as the movement go slow as well as bad body posture .

It is difficulty to check on people at the age above 60 years old to have PD. Therefore they mostly die on aspiration pneumonia. Besides we do not have enough Movement disorder specialists. It takes 2 to 3 weeks to make appointment with them especially in the remote countries . We have so far 4 PD specialists in Singapore and one in Malaysia. Best regards


Teo Kim Hoe

Dear Teo,

I did not realize there were so few Parkinson specialists in your country; that must make it even more difficult to get an accurate diagnosis of PD. Good for you for taking such an active part in your own health care -- you > have studied and researched PD and learned the best ways to fight it and > stay healthy, and minimize the symptoms. That will certainly stand you in > good stead!>> Best regards,

Kathrynne Holden, MS, RD

To well managed the PD diseases

Doctors of Movement Disease are trained on how to teach patients to control the Parkinson Diseases by medication but not trained on how to teach patients to well managed the PD diseases.

Therefore we have so few articles on how to teach PD patients to well managed the PD diseases.

Doctors of Movement Disease have the problems on how to teach PD patients to well managed the PD as their symptoms vary from one by others. It is very complicated and difficulty to diagnose unless they take times. They have to coordinate with other specialists to work hand to hand. It involves times and monies. Besides that they are limited by their own specialised field
To well manage the Pd's vary from one by other as they have different symptom.

Therefore it is hard to fix a standard programme for them.I hope there will have more articles on how to teach the patients on how to well managed the PD.

Teo Kim Hoe

A comment: NPF offers a series of educational booklets, free to the public. These may be ordered by phone or email, or downloaded at the website:http://www.parkinson.org/.Best regards,

Kathrynne Holden, MS, RD--

Juice fruit

Dear Kathrynne.

Is it true that when you juice fruits and vegetables,youhave to drink the juice right away or it loses its nutrients?
Thank You..

Terry

Dear Terry,Well, yes and no. It won't immediately lose ALL nutrients, but exposure to air and light will certainly start the process of degradation in fragile vitamins -- like vitamin C, for example. Storage for a day won't cause a total loss, but the sooner you drink it, the better.Best regards,Kathrynne Holden, MS

Five bahaviours

Most PD Patients have five behaviours after been diagnosed that they are PD patients i.e. self denial 2. Anger (Inflicted pain) 3. Bargain 4. Grief5. Acceptance.Doctors find difficulty to deal with them. They refuse to take medicine and delay times for treatment. As the result they have more sickness besides PD. The slow and stiffness of muscles movement affecting our whole body systems i.e. vision, speech, digestion, urine, breathing.They use to self denial and anger at people who are not PD and why they're not fair treated? They start bargaining without consultation with doctors and feel sad why they are not fair treated? They have to accept at last when they see no hope to be slowdown the disease.

Teo Kim Hoe

Dear Teo,These are very good points. Many times, I have noted that folks with a pro-active attitude who seek knowledge and understanding of PD and use good judgment with regard to diet, exercise, and medication regime are far healthier, and happier.Best regards,Kathrynne Holden, MS, RD--For a Parkinson Tip of the Day visit:http://www.nutritionucanlivewith.com/

Mediction and exercise



Author
Message
Anonymous
Posted: Fri Mar 23, 2007 6:24 pm Post subject: medications and exercises

I was diagnosed as PD in the year of Sept 2005 and taking Sinemet 25/100 one tablet at morning, afternoon and evening and one Jumet 5 mg at morning and afternoon only. I did very well in my gym classes at gym centre 2 -3 hours per day from Mon to Friday as I did not feel tired and exhausted. I took part body pump, combat, cardio, spinning, Yoga and Pilate when there were available in the gym. After 2 years in the gym exercises i.e 2005 to 2006 I started tired and exhausted at the beginning of the year 2007 after my first hour of gym exercise. Is it my PD movement disorders help me to continue the exercises for 2 to 3 hours that I do not feel tired and exhausted? Is it I am able to overcome/improvement of my movement disorders during the gym that I feel tired and exhausted i.e muscles are more flexibility, mobility and strength after 2 years of medication? Is it my medication wearing off and requires more doses or alternative? Is it my exercise cell help me to be able to spend 2 - 3 hours in the gym without feeling tired and exhausted during my first two years PD's life? Teo Kim Hoe
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Dr. OkunJoined: 19 Jan 2007Posts: 0Location: University of Florida
Posted: Sat Mar 24, 2007 6:23 pm Post subject:

Exercise is currently under investigation for putative neuroprotective effects in PD. We have always felt exercise is like a dug and stretching is very important. Exercise leads to changes in the chemicals in the PD brain that may be important symptomatically. Why have you had a decline? It is unclear, but I would suggest having your medications optimized. It may be a combination of problems including medications and PD progression. Exercise may have helped you from the very start of your disease and I would keep it up._________________Michael S. Okun, M.D.
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Anonymous
Posted: Mon Mar 26, 2007 7:59 pm Post subject: medication and exercises

I don't understand in your email why exercises had a decline i.e changes in the chemicals in the PD brain that may be important symptomatically? Would you kindly elaborate? Is that my exercise for a long times shorten the Sinemet i.e. effectiveness/ wearing off as exercise helps me from the very start of my disease? Any remedial to slowdown the PD besides exercises and medicines as exercise is still investigation of the effectiveness for putative neuroprotective effects in PD? Teo Kim Hoe
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Anonymous
Posted: Tue Mar 27, 2007 2:28 am Post subject: medication and exercises 4

After I have consulted with my doctor I increased one dose extra of Sinemet 25/100 before my bed time i.e. 4 doses of Sinemet per day: one in the morning, one in the afternoon, one in the evening and one before bed times i.e 4 hours in between. I feel much better and look more fresh i.e no hackles,no mask face, looking tired and exhausted after the exercises. I walk firmly and confidence. I agree it is the time for me to increase the intake of Sinemet. I still do not understand why the exercise leads to changes in the chemicals in the PD brain is so fast i.e 1 1/2 years only? Exercise and medication may have helped me for the very start of my disease but why it is wearing off 1 1/2 years and the Sinemet be increased? Why it had a decline? Is it I spend 2-3 hours on exercises daily and dried up the chemical in the PD brain? Would you tell me what are the possibilities lead to above changes? Would you tell me what are the combination of problems i.e PD progression and medication? Is it exercise? Teo Kim Hoe
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Dr. OkunJoined: 19 Jan 2007Posts: 0Location: University of Florida
Posted: Tue Mar 27, 2007 6:38 am Post subject:

We do not honestly know the specific answers to your questions. PD is a progressive neuro degenerative disease. Presumably up regulation of some chemicals early in the course when more cells are preserved would likely have more benefit. I do not honestly think exercise can stave off PD, but there is a notion it can positively influence the course. I would therefore adjust medications and continue daily exercising if you can._________________Michael S. Okun, M.D.
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Anonymous
Posted: Tue Mar 27, 2007 8:47 am Post subject: medications and exercises

Thank you for your explanation of the PD as there is no treatment of the disease but there is a way to slowdown progression i.e medication and exercises. The doctor has to monitor, adjust and optimize the effectiveness of medications. Teo Kim Hoe
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Anonymous
Posted: Tue Mar 27, 2007 7:45 pm Post subject:

PD is a progressive neurodegenerative disease. It is also a chronic disease, possibility an aging disease. There are possibilities to slowdown the progression i.e exercises and medications. Medications have to be monitored and optimized for its effectiveness to slowdown the progression from time to time by doctor. Stretching is important and helpful for your body i.e flexibility, mobility and strength. Teo Kim Hoe
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Mediction and exercise

Author
Message
Anonymous
Posted: Fri Mar 23, 2007 6:24 pm Post subject: medications and exercises

I was diagnosed as PD in the year of Sept 2005 and taking Sinemet 25/100 one tablet at morning, afternoon and evening and one Jumet 5 mg at morning and afternoon only. I did very well in my gym classes at gym centre 2 -3 hours per day from Mon to Friday as I did not feel tired and exhausted. I took part body pump, combat, cardio, spinning, Yoga and Pilate when there were available in the gym. After 2 years in the gym exercises i.e 2005 to 2006 I started tired and exhausted at the beginning of the year 2007 after my first hour of gym exercise. Is it my PD movement disorders help me to continue the exercises for 2 to 3 hours that I do not feel tired and exhausted? Is it I am able to overcome/improvement of my movement disorders during the gym that I feel tired and exhausted i.e muscles are more flexibility, mobility and strength after 2 years of medication? Is it my medication wearing off and requires more doses or alternative? Is it my exercise cell help me to be able to spend 2 - 3 hours in the gym without feeling tired and exhausted during my first two years PD's life? Teo Kim Hoe
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Dr. OkunJoined: 19 Jan 2007Posts: 0Location: University of Florida
Posted: Sat Mar 24, 2007 6:23 pm Post subject:

Exercise is currently under investigation for putative neuroprotective effects in PD. We have always felt exercise is like a dug and stretching is very important. Exercise leads to changes in the chemicals in the PD brain that may be important symptomatically. Why have you had a decline? It is unclear, but I would suggest having your medications optimized. It may be a combination of problems including medications and PD progression. Exercise may have helped you from the very start of your disease and I would keep it up._________________Michael S. Okun, M.D.
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Anonymous
Posted: Mon Mar 26, 2007 7:59 pm Post subject: medication and exercises

I don't understand in your email why exercises had a decline i.e changes in the chemicals in the PD brain that may be important symptomatically? Would you kindly elaborate? Is that my exercise for a long times shorten the Sinemet i.e. effectiveness/ wearing off as exercise helps me from the very start of my disease? Any remedial to slowdown the PD besides exercises and medicines as exercise is still investigation of the effectiveness for putative neuroprotective effects in PD? Teo Kim Hoe
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Anonymous
Posted: Tue Mar 27, 2007 2:28 am Post subject: medication and exercises 4

After I have consulted with my doctor I increased one dose extra of Sinemet 25/100 before my bed time i.e. 4 doses of Sinemet per day: one in the morning, one in the afternoon, one in the evening and one before bed times i.e 4 hours in between. I feel much better and look more fresh i.e no hackles,no mask face, looking tired and exhausted after the exercises. I walk firmly and confidence. I agree it is the time for me to increase the intake of Sinemet. I still do not understand why the exercise leads to changes in the chemicals in the PD brain is so fast i.e 1 1/2 years only? Exercise and medication may have helped me for the very start of my disease but why it is wearing off 1 1/2 years and the Sinemet be increased? Why it had a decline? Is it I spend 2-3 hours on exercises daily and dried up the chemical in the PD brain? Would you tell me what are the possibilities lead to above changes? Would you tell me what are the combination of problems i.e PD progression and medication? Is it exercise? Teo Kim Hoe
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Dr. OkunJoined: 19 Jan 2007Posts: 0Location: University of Florida
Posted: Tue Mar 27, 2007 6:38 am Post subject:

We do not honestly know the specific answers to your questions. PD is a progressive neurodegenerative disease. Presumably upregulation of some chemicals early in the course when more cells are preserved would likely have more benefit. I do not honestly think exercise can stave off PD, but there is a notion it can positively influence the course. I would therefore adjust medications and continue daily exercising if you can._________________Michael S. Okun, M.D.
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Anonymous
Posted: Tue Mar 27, 2007 8:47 am Post subject: medications and exercises

Thank you for your explanation of the PD as there is no treatment of the disease but there is a way to slowdown progression i.e medication and exercises. The doctor has to monitor, adjust and optimize the effectiveness of medications. Teo Kim Hoe
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Anonymous
Posted: Tue Mar 27, 2007 7:45 pm Post subject:

PD is a progressive neurodegenerative disease. It is also a chronic disease, possibility an aging disease. There are possibilities to slowdown the progression i.e exercises and medications. Medications have to be monitored and optimized for its effectiveness to slowdown the progression from time to time by doctor. Stretching is important and helpful for your body i.e flexibility, mobility and strength. Teo Kim Hoe
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'

Monday, November 19, 2007

How to differentiate the stages of PD?

Posted: Thu Apr 05, 2007 2:05 am Post subject: How to differentiate the stages of PD?

As PD patient has different syndromes and varies one after by other is it hard for the Movement Disorders Specialists to differentiate the stages of PD? Is it subjective? In this connection how to differentiate the stages of PD? Is it difficulty for them to optimize the combination of Medicine and PD? Some specialists favour of the high dose of PD and some are not as they start first with the low doses as PD medication has wearing off ? Is it helpful for PD patient starts of low doses or high doses to slow down the PD progression? My doctor favours with low doses for the new patient? Kindly elaborate?

TEO KIM HOE
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Dr. RodriguezJoined: 22 Jan 2007Posts: 0Location: Gainesville, Fl
Posted: Thu Apr 05, 2007 3:43 pm Post subject:

For any medical condition, the goal of the physician is to treat with the lowest effective dose. As of today, no medication have been proven to slow down the progression of the disease, so there is no need to prescribe very high dosages (however, some MD's may have their own opinions based on selected information they may have reviewed, not necessarily evidence based). The stages of PD used are the H & Y, not defined by the time the patient has been diagnoses, but by symptoms. For example, somebody may have just been diagnosed, may have very mild disease (tremors, slowness) but have balance problem. Automatically, this is a Stage 3. The way I defined it for myself is as follows. Anyone doing well on a 3-4 times a day regimen without wearing off, is early. If wearing off or mild dyskinesias, is moderate. When we as physicians pull our hair and have to reinvente the regimens, there are many motor fluctuations and they are unpredictable, that is advanced. Again, this is my definition and how I address therapy for my patients, is not a validated scale._________________Ramon L Rodriguez

Hormone therapy with PD

Wellness Centre at Bumrungrad Hospital International NO. 210 Sukhumvit 1 =(Soi Ruennrudee) Wattan,Bangkok 10110 Thailand Website: www.e-vitallife.com Email: info@e-vitallife.com

You can surf the website.Please kindly comment on Hormone and Mircronutrients therapy. Is it =helpful for PD patients?Best regards

Teo Kim Hoe

Dear Teo,It is difficult for me to give a good opinion, because I have never visited Bumrungrad facilities; but it appears to me to be a very sound and comprehensive program. I like the fact that individuals are seen by an entire health care team -- physician, pharmacist, laboratory specialists, nutritionist, exercise physiologist. I think this is particularly important for those with PD.

Regarding your hormone and nutrient therapy, if you have had the thorough testing described on the website, and been prescribed these by a Bumrungrad physician, then it seems to me that you are in very good hands.

You might ask the doctor about the amounts of vitamin A, and find out whether iron is included, just to be on the safe side.
Best regards,
Kathrynne Holden, MS, RD--For a Parkinson Tip of the Day visit:http://www.nutritionucanlivewith.com/