Is exercise harmful?Can exercise worsen PD progression?

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Anonymous
Posted: Wed Dec 26, 2007 5:13 am Post subject: Is Exercise harmful? Can Exercise worsen PD Progression?

I am a patient suffering from Stage II Parkinson's Disease. I am 68 years old. Lately I have been feeling fatigue, particularly in the regions of my eye and head. Generally I feel tired and sleepy throughout the day. I would like to know whether my exercise regime is bthe cause of my fatigue, and if so, whether my exercise is excessive or optimum. Furthermore, I would like to know, whether the level of exercise I am doing is harmful and worsens my PD progression. I generally workout in the gym for six days in a week, and most of them up to an aggregate of three hours each day. My exercise schedule consists of an hour of Hatha Yoga, two hours of Personal Training with my personal trainer, which includes cardio activities on the treadmill, cross trainer, bicycle, and kick boxing. Sometimes I may substitute the personal training sessions with aerobic classes of "BodyCombat" , a kick boxing class, which includes moves from taichi, muay thai and side and front kicks, japs and jumps, and spinning classes, a cycling class. Sometimes I may even do a group exercise toning class, Bodypump, which involves the carrying of weights targetted at each part of the body. Each of these classes are for a duration of one hour each. All in, I generally workout up to three hours each day, sometimes more, for six times a week. Sunday is my rest day. All in I put in about 18 hours a week on workouts. Given the above information, is my exercise regime excessive? Is it harmful to my physical and mental well being? Most importantly, does it worsen my PD progression directly or indirectly. I am currently taking Requick (6 tabs (2 mg) per day) and Sinemet (3 tabs (25/100) per day). I am also taking "anti-oxidant" supplements, consisting of multi-vitamins and minerals, prescribed by the medical practitioner at Bumrungard Hospital at Bangkok. Does the above presciption in any way, cause my feeling of fatigue? I would be grateful if you could enlighten me on the issues raised herein. Yours sincerely Teo Kim Hoo
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Dr. FernandezJoined: 20 Jan 2007Posts: 90
Posted: Thu Dec 27, 2007 10:30 am Post subject:

Each person has a different tolerance level, different fitness level, and different levels of cardiovascular fitness. So what is excessive for you may not be excessive for another person. In general, I advocate at least 1 hour per day of exercise. You far exceed that. But maybe you are more fit than the average person? If you find yourself tired all the time, it couls be a sign that your exercise is excessive. Try cutting back to 2 hours per day and see if you feel better with that. In general, I advocate aerobic exercises over strength training. Aerobic exercises are better for your heart and better for your PD. In general, "the heavier" the exercise the better. But there is an important caveat to this: heavier is better as long as it is safe and your body (especially your heart) can tolerate it. Exercise is great for PD! Yours,_________________Hubert H. Fernandez
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Wow,that is an impressive workout, You may want to discuss this with your doctor if this has only recently occurred,maybe your medication needs adjustment ,does your doctor know about all of your non prescription medications? All the reading I have done clearly comes down on the side of exercise having enormous benefit to Parkinsons expecially in terms of seeming to delay progression and lessen symptoms,it also benefits mental health. It is possible you may be overtraining,consider decreasing your intensity for a week and taking more rest,such as simply lying down with a book for 15-20 minutes.Good luckbrowncat8


Is Exercise harmful? Can Exercise worsen PD Progression?

Mr Teo's fatigue is mainly caused by excessive physical exertion. It is good to remain physically active when you have PD, but I think Mr. Teo is overdoing it. Dr Chew Nee Kong



Joined: 19 Jan 2007Posts: 251Location: University of Florida
Posted: Sat Dec 29, 2007 10:51 am Post subject:

Thanks for the follow-up. It is hard to know where the line is with too much exercise and that is why regular discussions with your doctor can be helpful to define the best levels!_________________Michael S. Okun, M.D.

In general moderate exercise is beneficial. The results come in the long run. Immediately after exercising you may feel worse. I know a man from the NPF forum who has had PD for 32 years and still runs marathons(26miles).
Jack


Posted: Fri Jan 04, 2008 7:25 pm Post subject: tai chi vs. yoga

i am a 54 y/o female weight 113lbs i want to try TAI CHI . DO you think it would be better than just aerobic exercise? I do brisk 3-5 miles walking 6 days a week, and will continue. wOULD the Tai chi help my balance? Do you feel that exercise helps to retard the progression of PD? one last query......if u could only spend 1 hour a day to exercise .....what routine would you chose? MANY THANKS FOR YOUR TIME! REGARDS, BAMBI
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Dr. FernandezJoined: 20 Jan 2007Posts: 90
Posted: Sat Jan 05, 2008 11:30 am Post subject:

There are several studies on Tai Chi right now looking at whether it can improve PD and balance in PD...I am hopeful. I think it does help. Techinically or scientifically, the different forms of exercise have not been compared head to head so it is difficult to say which type of exercise is superior. Anyone claiming superiority would just be blowing off hot air, and basing in on theory rather than actual findings. And you know that we have such a low batting average in testing drugs that we think should slow or stop the disease but when actually tested show disappointing results. What I can tell you is that most likely exercise dose help PD, and perhaps it even slows disease progression. As to what type of exercise is the best, the one that you can stick with, that you enjoy, that you can do on a daily basis (preferably for 1 hour each day throughout the year), that is safe, that does not put you at undue risk for falls, that your heart and body can tolerate, is the best exercise. We have reason to believe that the more aerobic, and the one that promotes symmetry and extension (more than flexion), the better. Yours,_________________Hubert H. Fernandez

Posted: Fri Jan 04, 2008 5:09 pm Post subject: Is exercise harmful?Can exercise worsen PD progression?

I refer to the above articles. It is my dry mouth, a common symptoms of Parkinson's patient that I feel tiredness from exercises. My saliva that seems thick or stringy in my mouth. I have cracked lips at the corners of the mouth. I some time find difficulty to talk because of my rough, dry mouth or tongue. I have a bad breath. TEOKIMHOE

Posted: Sun Jan 06, 2008 9:10 am Post subject:

The dry mouth could also be medications (anticholinergics) and occassionally people have another disorder (Sjogren's, or another) so you may want to discuss options with your local doctor. Good luck._________________Michael S. Okun, M.D.

Sex and Parkinson's

I have a PD patient and taking PD medication for two years. I was told by his wife he is changing his lifestyle by sleeping naked on bed and has sex every night. He starts doing beauty care i.e facial and body massage, manicure and pedicure two times a week and putting on new clothes to be young at heart. He is fun on looking beautiful girls He is taking sinemet 25/100 one in every four hours. Is it side effect of the medicine? Is it aging process?

talk about sex…because having any chronic condition is bound to affect a relationship on both a physical and emotional level. Both partners in a couple whose lives have been affected by Parkinson’s disease need to understand the disease and its progression in order to cope with any difficulties which may arise in their sex life.

Many of the symptoms associated with Parkinson’s disease are thought to be caused by lowered levels of dopamine in the brain - a chemical that transmits messages from the brain’s “relay center” to its nerve cells, enabling physical movement. It is possible that the dopamine decrease may also cause a lessened drive or interest in sex

http://www.webmd.com/parkinsons-disease/parkinsons-sexual-problems

Nutrients, Parkinson's and I

However I still believe when you exercise more you need more nutrients to protect yourself from oxidative stress whether you are athletics or not.Because of increasing energy production in the cell (from some medicine, exercise or stress, etc ) will increase free radicals production as well, this is the natural biological process in the body.But regular exercising will increase endogenous antioxidant enzyme that enhance antioxidant mechanism in the overall. The aging process, antioxidant level and oxidative stress are dynamic process which we have to monitor every 6 months or every year at least i.e blood test on your nutrient level.I understand most PD patients have deficiencies or decreasing of antioxidants, frolic acid and Vitamin B 12 or 6 and these deficiencies occur in old adult too. To improve your nutrient level in natural and safe way mean you have more fruits, vegetables and fish ( source of Co enzyme Q 10.)Kindly advise.

I would like to know if you all request blood tests and urine tests when you go to the doctor or does he tell you it's time? My family doctor seemed to question my need for frequent blood work and I was really thinking more in the every three month field for blood and every 6 weeks for urine. I really think if I didn't mention it he wouldn't bring it up,,,,,,,POKIE
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My neuro has never done a blood test, or any other diagnostics, other than visually observing my symptoms, and what I tell him. (I tell him I can't take a blood test until I've had time to study for it). I see him quarterly, which is a good timeframe. My neuro medicates me as little as possible to achieve results. For me, "less is more", and I am actually better now than a year ago, many of my symptoms having either lessened or disappeared completely, especially the memory , motivation, and cognitive issues, in large part due to the info about nutrients and supplements I found through this forum. Everyone who sees me now says I am "my old self" again, the 'GO-TO" person for just about anything my friends or family or co-workers need. Of course my way is not for everyone, we all have different health issues to deal with, along with well-meaning family and friends who often don't understand, and say the wrong things. I am one of those who is a pro-active "self-healer" in both body and mind, only seeing docs for real emergencies, which is usually once every two years, not for every little pain that comes along, and ignoring the doubters and naysayers with their negative or pessimistic comments . Everyone told me it's "too hard" to lose weight. I found a doc who specializes in weight loss, and so far by following his program of appetite supression meds, diet, and exercise, I have lost 28 pounds (as weighed at the clinic) in one month, my waist going from 42 inches to 38 inches. I have 23 pounds to go to get back to my pre-pd weight. I HAVE TO GO NOW, WILL BE INSTALLING NEW LIGHT FIXTURES, SANDING AND REFINISHING AN OLD CHINA CABINET, AND RUNNING A NEW TV CABLE LINE AT MY IN-LAWS HOUSE. GOOD LUCK, AND DON'T LET THE NAYSAYERS DRAG YOU ticky


I am so proud of you but be careful. In 96 I was on the diet drug of the time. I can't recall the name but my best friend is a RN and I had lost almost 50 lbs ask me to quit taking it. Something about it scared her. I stopped and 14 days later had a grand mal seizure. She swears the diet meds played a part, I don't think so.......Just be careful, if you start getting flu like symtoms don't just right it of to the flu get to a doctor even if it's not in your once every two year thing..........love ya ...

Agility

Living with parkinson's for the past of two years and is on medication.

I have physicial difficulties as follows:

1.Able to move quickly or easily and neat in movement; nimble

2.Quickly to grip/seizing something firmly both from fingers/ hand to take

3.Easily to lost my grip on the slope

4.Agile mind to think quickly or acute

Is it an aging process or advancing stages of PD?

You bring up many thoughts, upon dx you either accept what your Neurologists says or go for another opinion. Then you do research and read what ever reliable sources you can. By trying to understand the disease is the only way one can accept it. Do we tell others? I feel only if it makes you feel more comfortable in doing so, they may see symptoms you have that you don't even realize are seen by others. But above all tell your family & loved ones it is only fair, let them deal with it how ever they choose. You will find most people do not know that much about the disease and are most often surprised how the disease affects so
many parts of our body. Deeann

Teo, my friend, these things could be PD, or could be the fact that you are 68. Probably some combination of the two. I empathize with you. I have had to give up mountain hiking and long distance bicycling due to age and PD. However, I think it is good to stay as active as we can.

i agree with jacki to can no longer do my runs that i loved. there are days i feel like i am a 100 yr old lady just hobbling around. i do try to do whatever i can to keep active even if its at a snails pace now.
Lee

Early parkinson's patient

fully aware that the early stage of PD patient does not accept that he has symptoms of PD even have been diagnosed by doctors.. He treats it as an aging process as the result the patient end up with Parkinson's progression. Besides Parkinson's has symptoms with other related diseases and some doctors wrongly diagnosed as an age aging process. I am one of the sufferer's. It takes me four years to be treated as Parkinson's patient. I am fortunate that my PD is slow progression.as I do daily exercises far ahead for changes of my body.movement. The late Parkinson's treatment aggravates the sickness further and could not to be normal and enjoy good quality life. Therefore a good start to tackling health issues is to understand the diseases themselves. As an early PD patient I experience emotional disorders - anxiety,depression, apathy, uncertainties and stress. : I have fear as follows:- When do I tell others, and what do I say? Whether to tell " is a question posed by many people in the early stage of PD disease. 1. Is it jeopardize my job? Don't let other people feel sorry for me and for my wife and children? 2. Keep it yourself as secret and privacy and once it reveals you feel sorry as you cannot take it back. 3. I feel relieve as I tell out and I could get some support. 4. It is hard to keep it secret as PD is a not ' going on "disease and the tension of hiding it. 5. It helps more people to aware the diseases and encourage more set up support group and seminars i.e fund raising for the poor patients and learn to manage and overcome the disease and feel you are not alone. TEO KIM HOE

You bring up many thoughts, upon dx you either accept what your Neurologistssays or go for another opinion. Then you do research and read what ever reliable sources you can. By trying to understand the disease is the only way one can accept it. Do we tell others? I feel only if it makes you feel more comfortable in doing so, they may see symptoms you have that you don't even realize are seen by others. But above all tell your family & loved ones it is only fair, let them deal with it how ever they choose. You will find most people do not know that much about the disease and are most often surprised how the disease affects so many parts of our body. Deean

Shoes and Balance? Discussion Forum

What does MBT mean?? Sorry for being so dense, teokimhoe. I stopped wearing jogging shoes just as soon as I was diagnosed. I changed to walking shoes, as suggested in some of the early research I did on the net about living with Parkinson's.I have been battling lately to find a Sunday shoe that did not make my balance worse. I haven't worn even a small heel for years, long before I was diagnosed, but even dressy flats were giving me more problems than I wanted. I didn't want to wear the athletic walking shoes to church with dressy pants suits, but for the longest couldn't find an alternative. Then I found some Skechers sneakers that fit perfectly and I like the looks. They are lace up, with suede and leather sections, and don't really look like athletic shoes. But they have helped my balance considerably on Sundays, and for that I am grateful.
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So far I do not see any article for the above subject in your Discussion Corner Forum.What are the shoes are suitable for Parikinson's patients?As for the shoes I suggest putting on "MBT" it helps you walk upright and swing your arm whilst go jogging.The benefits are as follows: 1. Improve posture and Giat. 2. Activates neglected muscles 3.Tones and shape the body. 4. Can help with back,hip, leg and foot problems. 5.Reduce stress and knees and hip joint I am sure there are shoes besides MBT suitable for Parkinson's patient. However it is individual

masked face with parkinson's disease

People with masked faces is a signal for neurological conditions and emotions disorder People with masked faces is expressionless appearance of individuals with disorder . There are ways to diminish masked faces as follows:1 MST training (muscle strength training) for people with masked faces to improve respiratory strength and mobility of muscle around the mouth.2. Blowing air into a balloon help to relax your stiffness and rigidity of muscle around your mouth.3. Gargle yourself with water in your throat and blow air through it without swallowing it ,by twisting your head left and right, up and down to increases your facial muscle strength to relieve and improve people with problems of respiratory and swallowing


Thanks so much, I shall be trying those excercises, that is the one thing I miss the most is my smile. Please don't laugh the reason is; one is always greeted by the smile on the person face as you meet them so you have a tendency to smile back. Many a friendly chat has been the results a friendly smile. A number of years before I was dx my children would say SMILE mom when taking my picture I would say I am trying to. Never realized there was no smile, I loved walking down the street smiling because life was great never totally realized they saw my smile and now I miss it. Deeann

Teo, phlegm and cough, and other respiratory troubles are side effects of Levodopa therapy.

It is increasingly recognised that the non-motor effects of PD including depression and cognitive dysfunction can have a greater impact on patients' quality of life than the movement symptoms. The difficulty is that we are only at the stage of being able to recognise these symptoms and are just starting to integrate treatment options in to how we manage people. The difficulty is that the common PD drugs have only been tested on their efficacy for motor symptoms; there haven't been well-controlled trials of different antidepressants in PD although my group at King's College London is working on a large project to help understand the progress of PD-depression better.The other difficulty is convincing the professionals (and their funders and bosses) that PD has changed from a straightforward "more dopa or less dopa" situation to a much more complicated picture with management of multiple over-lapping symptoms; insomnia, diarhoea, constipation, anxiety, depression, hallucinations, fatigue, apathy, cognitive problems, memory difficulties... We'll do what we can from our side, maybe this calls for a research study???Paul
Mark

Wednesday, December 19, 2007

Teo, it is good to read your fine posts again. I miss your dialogs with "ask the doctor" at NPF.I agree that PD is a disease of the body and the mind, but not the soul. The soul as I understand it is our essence and it is untouched by the things of this world. I lean towards the Hindu belief in Atman, being that our soul is really God in us. How can that be effected by PD. However, I understand what you mean our feelings are effected by all means.Jack
Posted by Hero Teo at 6:24 AM

Thanks so much, I shall be trying those excercises, that is the one thing I miss the most is my smile. Please don't laugh the reason is; one is always greeted by the smile on the person face as you meet them so you have a tendency to smile back. Many a friendly chat has been the results a friendly smile. A number of years before I was dx my children would say SMILE mom when taking my picture I would say I am trying to. Never realized there was no smile, I loved walking down the street smiling because life was great never totally realized they saw my smile and now I miss it. Deeann

Neck and shoulder stiffness: Parkinson's

suffer with my neck and shoulders; however, lately I find it has been a while since it has bothered me....but the rest of my body has been in what I term a "flair up" When my neck and shoulders are bad I have a homemade sewn cloth bag filled with flax seed a neighbor gave me that I put in the microwave and heat up and lay across my shoulders..in other words heat seems to help calm the muscles when they spasm....it even seems to help my legs/calves when they flair up, which seems to be often lately.I get a stiff neck especially when I am at the computer. An Ibuprofen and a hot bath work wonders.Jack

I suffer with my neck and shoulders; however, lately I find it has been a while since it has bothered me....but the rest of my body has been in what I term a "flair up" When my neck and shoulders are bad I have a homemade sewn cloth bag filled with flax seed a neighbor gave me that I put in the microwave and heat up and lay across my shoulders..in other words heat seems to help calm the muscles when they spasm....it even seems to help my legs/calves when they flair up, which seems to be often lately

Massage

Massage is the practice of applying structured pressure, tension, motion or vibration manually or with mechanical aids to the soft tissues of the body, including muscles, connective tissue, tendons, ligaments, joints and lymphatic vessels, to achieve a beneficial response. Read more...

I have had depression and anxiety literally my whole life. I have made several suicide attempts, some as young as eight years old. Two very serious attempts in 1995 and 1997. I was hospitalized each time. My psychiatrist and my MD both tell me that trying to treat PD and depression simultaneously is very difficult. I am taking Paxil and Ativan which both help, and surprisingly help the PD a little.So why am I telling you this? Because I found a way that helps, at least for me. You may or may not want to try it. First, I am determined to think of others needs and do not focus on myself. Second, I have found peace after searching my whole life, a faith. I do not get hung up in dogma and subscribe to a laundry list of beliefs, but I have faith and it works. Pray for others. Exercise, and relax and rest when you are weary. TRUST YOURSELF.All of this works for me, and the secret is that it is my way. You can find your way if you look for it.Peace, joy, hope, and health to you Mama.Jack
1 Mark

Teo, it is good to read your fine posts again. I miss your dialogs with "ask the doctor" at NPF.I agree that PD is a disease of the body and the mind, but not the soul. The soul as I understand it is our essence and it is untouched by the things of this world. I lean towards the Hindu belief in Atman, being that our soul is really God in us. How can that be effected by PD. However, I understand what you mean our feelings are effected by all means.Jack

Here in the West the yoga we know is Hatha Yoga. It is a physical limbering technique employing various positions and poses.Yoga in Sanskrit means yoked or joined. It is practiced in Eastern religions as a means of attaining connection/joining with God or the Absolute. According to the Bhagavad Gita there are four types of spiritual yoga"Jnana Yoga = connecting by knowledge. Reading, learning, and thinking about God.Karma Yoga = connecting by action. Doing for others with no expectation of gain.Bhakti Yoga = connecting by worship. Thinking about, and praising God.Rajah Yoga = Royal connection = meditation.These are all practiced by Hindus and some Buddhists.Jack

Since I have had PD heartburn has been by my side. I take Maximum Pepcid and watch certain foods. The way I understand it is that our stomach muscles slow down in processing the foods we eat. I just know that Chocolate, tomatoe and sometimes even bread can set it off. I choose not to take a Rx for it, but there are medications the dr can give to your brother to put out the flame....I hate it sometimes....Really though you should have him check with the dr. best of luck!!

Oh how I hate this symptom....I wish sometimes I could take a PIN and pop my tummy!!!!!!!!!!!LOL

Teo, we seem to be traveling together from NPF. Yes, I bloat a lot, especially at night. My stomach looks like a balloon. But in the morning I am back to my "washboard belly" self(ROFL). Well maybe not washboard, but I do lose a few inches. I agree with Butterfly, I would like to stick a pin in it, but I would probably fly around like a balloon does when there is a hole in it.Jack

Teo, it is good to read your fine posts again. I miss your dialogs with "ask the doctor" at NPF.I agree that PD is a disease of the body and the mind, but not the soul. The soul as I understand it is our essence and it is untouched by the things of this world. I lean towards the Hindu belief in Atman, being that our soul is really God in us. How can that be effected by PD. However, I understand what you mean our feelings are effected by all means.Jack

Hello teokimhoe, Thank you for your comment. I sent you a note yesterday,, and I think something went terribly wrong with it. As I sent it, my computer must have pasted onto my message a post from someone in another forum - I saw a glimpse of my message as it was wafted away, and it was the post I had copied that I glimpsed, not my greeting to you. The copied post is horrible. I had copied it to show my husband how horrible it was, and I certainly did not mean to send it to you in my comment. I just wanted to thank you for sending me a message. Please know, that I did not write what came after my thanks to you. I am so sorry to have sent it to you by mistake, it is a very unpleasant, bragging post, and you must have been so puzzled to read it, and you must have wondered why on earth I would go on and on about my own goodness and send it to you. If you did not get the wrongly sent post, and wonder what on earth I'm talking about, I shall be very happy.I reported my problem with my message to the forum, but they could not stop or erase the message. So, once again, if you did get a long message from me about generosity etc. I am truly sorry. It was a mistake. And again I WOULD NEVER WRITE SUCH AN AWFUL, SELFISH POST. Please let me know if you got it, if you read it with as much disgust as I did, and please let me know that, if you got it, you will forgive me for the confusion.All the best,drossel

Knowlege is a power to battle with pd

Hello I am interested in your articles also your country you live in. I have a Daughter-inlaw who is Asian she comes from China lived in Shanghi. I like your post on exercises for the face as I too have that mask like face.I used to smile a lot now I don't, or if I do no one sees it. I should wear a shirt that says I AM SMILING. How did you learn so much having been diagnosed for only a year. I did not know a thing about Parkinson's till I was diagnosed then I went to the local Medical Library and read as much as I could. Sorry to say I was really sick at first so do not retain what I read as well as I should. Please feel free to contact me. Click the letter across from my post in Patients. Deeann

Medications for Parkinson's

medication for Parkinson’s
Posted on December 18th, 2007 by heroteo
You seem very intelligent, and very experienced with PD. Please help me with these questions. Please tell me what you think of the vitamins, minerals, herbs that I am listing??? Do these ones help to slow or stop parkinson’s disease???
Co-Enzyme Q-10-(1,200-mg per day)Vitamin E-(400-IU-per day)Vitamin C-(1,500-mg per day)Folic Acid-(400 mcg per day)Ginkgo Bilboa-(120-mg per day)Zinc-(15 mg per day)Flaxseed Oil-(Omega 3 Fatty Acids)-(1,200 mg per day)Lecithin-(1,200 mg per day)Selenium-(75 mg per day)Calcium-(1,500 mg per day)Magnesium-(750 mg per day)PhosphorousPotassiumAspirin-(81 mg per day)
((Powerful Multiple Vitamin With Vitamin B Complex,Lycopene-(10 mg per day),lutein-(950 mcg per day),Quercetin-(12.5 mg per day)))
Pomegranate Extract-(40 mg per day)Pycnogenol_(50 mg per day)Reveratrol-(40 mg per day) Tumeric-(450 mg per day)Echinacea-(1,140 mg per day)Acetyl-L-Carnitine-(500 mg per day)Alpha Lipoic Acid-(200 mg per day)Huperzine-A-(50-mcg per day)Phosphatidylyerine-(100 mg per day)Cinnamon Powder and Bark-(250 mg per day)Grape Seed Extract-(100 mg per day)Bluberry-(350 mg per day)N-Acetyl-L-Cysteine-(600 mg per day)L-Arginine-(500 mg per day)
Please give me your experienced opinion on these?????? Thanks!Kirk

masked face with parkinson's disease

Hello I am interested in your articles also your country you live in. I have a Daughter-inlaw who is Asian she comes from China lived in Shanghi. I like your post on exercises for the face as I too have that mask like face.I used to smile a lot now I don't, or if I do no one sees it. I should wear a shirt that says I AM SMILING. How did you learn so much having been diagnosed for only a year. I did not know a thing about Parkinson's till I was diagnosed then I went to the local Medical Library and read as much as I could. Sorry to say I was really sick at first so do not retain what I read as well as I should. Please feel free to contact me. Click the letter across from my post in Patients. Deeann

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
Oct 6, 7:42 AM — [ Edit Delete Unapprove Approve Spam ] — # 0

The symptoms of Parkinson's patients

Anxiety includes feelings of panic, fear, or uneasiness that patients may experience for a variety of reasons. Symptoms may include obsessive thoughts, nightmares, problems sleeping, cold or sweaty hands, shortness of breath, palpitations, and nausea

Muscle spasticity is characterized by tight, stiff muscles and is a common symptom of several neurological disease, causing cramping, stiffness, and muscle discomfort

A feeling of slowness of "bradykinesia" is one of the cardinal symptoms of Parkinson's disease. People may have to concentrate very hard to carry out physical movements, or they may react more slowly to things going on in their environment. Some people also have trouble initiating movement

Fatigue is a feeling of exhaustion or loss of strength typically resulting from muscle weakness or spasticity. Patients experience tiredness, dwindling strength, and lack of energy.

Daytime Sleepiness, or "somnolence" makes people feel compelled to nap repeatedly during the day, often at inappropriate times such as at work, during a meal, or in conversation. These daytime naps usually provide no relief from symptoms

Insomnia refers to a variety of difficulties in obtaining a full, restful night's sleep. Patients suffering from insomnia may have difficulty falling asleep or staying asleep, may wake up frequently during the night, or wake up earlier in the morning than desired

Memory problems in Parkinson's disease usually consist of slowness in learning new things or a feeling that memories are recalled more slowly. In particular, spatial memory can be affected, causing problems copying diagrams or remembering direction

Depression is a change in mood that causes people to feel sad or hopeless for an extended period of time. Depression can be a progressive condition - patients who do not seek treatment for their depression are likely to become even more depressed over time.

Excess saliva in neurological diseases is caused not because of an excess of saliva but because an individual no longer swallows the saliva as effectively. This can lead to drooling, coughing, and/or aspiration (entry of saliva into the breathing passages, which can cause infection). .

Individuals may experience constipation as a result of immobility, leg weakness, changes in diet (less fiber), or a decrease in drinking fluids. Constipation is defined not only by how frequently you move your bowels, but also by whether the stools are hard, dry or difficult to pass

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Sleep disorders

Sleep disorders are the disorders in sleep pattern. Sleep is a complex neurological state. Its primary function is rest and restoring the body's energy levels. Repeated interruption of sleep by breathing abnormalities such as cessation of breathing (apnea) or heavy snoring, leads to fragmented sleep and abnormal oxygen and carbon dioxide levels in the blood, all these things lead to sleep disorders.
Sleep consists of a rhythmic combination of changes in physiological, biochemical, neurophysiological and psychological processes. When the circadian rhythm is disturbed or the individual processes are abnormal during sleep, a variety of sleep disorders may result.
Two types of sleep occur with distinct physiological patterns, rapid eye movement sleep (REM), and non-rapid-eye-movement sleep (NREM) or deep sleep. In normal sleep, REM occurs about 90 minutes after a person falls asleep.
The REM and NREM recur in cycles of about 90 minutes each, with four non-REM stages (light to deep slumber) at the beginning and REM towards the end. The amount of sleep needed by each person is usually constant although there is a wide variation among some individuals.
Some sleep disturbances are simply temporary inconveniences while others are potentially more serious. Sleep apnea is the most common sleep disorder. Other serious sleep disorders are narcolepsy and clinical insomnia.
"Jet lag syndrome," caused by rapid shifts in the biological sleep-wake cycle, is also an example of a temporary sleep disorder. So do the sleep disorders experienced by shift workers.
Prone People for Sleep Disorders :
Some of the people most likely to have or to develop a sleep problems include:
People who are overweight, or have some physical abnormality in the nose, throat, or other parts of the upper airway.
People who habitually drink too much alcohol.
People with depression and other psychotic disorders.
Elderly men and women.
Adults who fall asleep at inappropriate times and places (e.g., during conversation, lecturing, driving) and who exhibit nighttime snoring
Night-shift workers.
Postmenopausal women.
Blind individuals who tend to develop impaired perception of light and darkness and have disturbed circadian rhythms, the cycles of biologic activities that occur at the same time during each 24 hours.
Tips to overcome Sleep Disorders and have a nice sleep:
You can overcome the sleep disorders and have a good sleep using these tips:
Regular exercise is known to be good for helping people sleep properly
Avoid caffeine, found in tea, coffee, colas and chocolate
As alcohol acts like a diuretic, avoid for good nights’ sleep
Some medications cause sleep disorder; notice the drug, which affects your sleep and avoid it.
Eliminating stress and depression

<--Sleep Disorders Introduction
Sleep Disorders-->

Dear Mr Teo,

I read through your last email: Nutrients & Parkinsons.
I agreed with the contents and have to comment that Keng Ann is really malnorished

Physical and mental exercises

Physical exercise and learning (mental exercise) slow PD progression.

For myself I spend three hours daily on exercises at the gym . I take part yoga, body pump, combat and spinning classes daily. I have two trainers for myself and learn how to stretching, balance and flexibilities, I do Box and kick exercises too.Besides medication exercises relieve me from movement slowness. I have to fight and manage my Parkinson's. My doctor told me I do not like parkinson's patient as I am now normal. He was surprised for my progress

The key to fight the Parkinson's disease are as follow: Understand the symptoms of PD as knowledge is a power. Physical exercises to stretching the slowness of movement and relieve the stiffness of your muscle

Medication is to help you to slowdown the diseases. Prayer is to comfort your mental uncertainiesion to normal.

Slowness

A feeling of slowness of "bradykinesia" is one of the cardinal symptoms of Parkinson's disease. People may have to concentrate very hard to carry out physical movements, or they may react more slowly to things going on in their environment

Parkinson's patient find difficulties to coordinate his body work together well.

There are exercises that the patient has to coordinate together with his body..

The slowness of movement contribute the incoordination to carry out physical exercise.

Some people also have trouble initiating movement.

Therefore they have to concentrate very hard to carry out their movement exercises. Thus it slowdown the movement when you carry out your exercises.

Hi Teo, I remember you from PDF. Yes, I agree, movement exercises are very helpful.

Jack

Parkinson's patient with deficient sodium

What are the symptoms for parkinson's patient with deficient sodium?

What are the signs of sodium deficiency for parkinson's patient?

What are the function of sodium in our body?

What are the causes of deficiency?

Teokimhoe, I suggest you go to the PDF forums and "ask the dietician", or "ask the doctor"

.Sodium is an electrolyte that is important for cell health, all cells. Cell walls act as a membrane for osmosis that maintains the proper comcentration of sodium and potassium within the cells. I am familiar with the problem of too much sodium, it raises blood pressure. And too little potassium may result i
n a lazy heart. But I don't know about sodium depletion, except it is not good for your cells. I think it would be a stretch to try and connect that to the particular cells in the substantia nigra. These metabolites effect all cells, thay are not particular.One major cause of sodium deficiency is excess sweating.That probably does not answer you, so go to NPF.

Introduction to Parkinson's Disease

Introduction to Parkinson's Disease (PD)

Dr Chew Nee Kong
Consultant Neurologist
Pantai Cheras Medical Centre
Kuala Lumpur.
8th October 2007.
Email: nkchew33@hotmail.com

What is PD?

PD is a progressive, nervous disorder characterized by a deficiency of dopamine, a biochemical substance in the brain that is important for coordination of body movement. PD is named after Dr James Parkinson, a British general physician who wrote the first comprehensive report on this illness in 1817.

What is the cause of PD?

PD is a mysterious illness - to date the cause of PD is generally unknown. There is also no cure yet. As such the symptoms of PD deteriorate with time despite medications. Despite this, the available treatment (medications and brain surgery) are effective in improving the quality of life of PD patients.

What are the symptoms of PD?

The commonest symptoms are tremor (uncontrollable trembling of hands), slowness of movement and body stiffness. These symptoms result in difficulty in getting out of a chair, starting to walk, writing and turning over in bed.

However, it is important to note that the symptoms of PD start very slowly and can be so subtle that sometimes patients themselves do not realize they have the disease until at least several years after its onset.

Occasionally, the observant spouses and immediate family members are the first ones who notice the early symptoms. Quite often, it is the slowness of movement rather than tremor that brings a patient to see a doctor. This is because tremor by itself is usually not as disabling as slowness of movement especially in carrying out basic daily activities such as bathing, walking and eating.

Who are at risk for getting PD?

PD does not spare any race or ethnic group - it is seen in any country in this world. PD can affect any age group but it is most common in elderly people. It is known to affect even children and teenagers (hereditary parkinsonism) but this is very rare.

Age is an important risk factor for PD, with the incidence rising with age. Thus, PD is generally an illness of elderly people. However, a small percentage of PD patients are relatively young. A study which was carried out at University Malaya Medical Centre, Kuala Lumpur (1998) on 153 PD patients showed that the onset of symptoms was at age 20-45 in 20.9% of patients (one patient had onset of symptoms at age 24).

How is PD diagnosed?

This is carried out based on typical history and bed-side examination. A good response to medications further support the diagnosis of PD. Brain scans and blood tests are generally not necessary.

What are the treatment options for PD?

During the early to moderate stage of PD (first 10-15 years), most patients are on medications alone. However, as the physical disability of PD patients become more severe with time, after 10-15 years of illness, many PD patients have difficulty carrying out daily activities despite taking maximal medications.

At the advanced stage of PD (after 10-15 years), brain surgery is effective in relieving the main symptoms of PD such as slowness of movement and tremor. Currently, surgical treatment is available in Malaysia.

Supportive treatment involves counseling, dietary advice, physiotherapy (exercise) and rehabilitation (social and occupational therapy while specific treatment employs drugs and brain surgery.

Conclusions

Even though there is no cure for PD, it is important to recognize the existence of PD because the rapid improvement in the treatment has resulted in much better quality of life. PD patients should not be made to suffer as they used to be. Generally, PD patients do not require wheelchair anymore. There are so many new and effective medications for PD.

With the increase in the proportion of elderly people in the society, there will be more and more PD patients in the near future. PD will become a major health burden in the near future.
Parkinson's Disease Discussion Corner

All of you are welcomed to join Mr Teo Kim Hoe, a Parkinson's patient, in discussing any issue or problems regarding Parkinson's Disease.

Share your experiences and knowledge so that all Parkinsons patients will have a better life.

Join Mr Teo in his blog spot - http://www.movementdisorder.blogspot.com

How do you do if you are an early PD patient?

teokimhoeJoined: 03 Mar 2007Posts: 28Location: Malaysia
Posted: Thu Apr 12, 2007 3:11 am Post subject: How do you do if you are an early PD patient?

Posted: Sun Apr 08, 2007 10:21 am Post subject: Q: What is the behaviours of early PD Patient? -------------------------------------------------------------------------------- The behaviours of early PD patient as follows: When do I tell others, and what do I say? Whether to tell " is a question posed by many people in the early stage of PD disease. 1. Is it jeopardize my job? Don't let other people feel sorry for me and for my children? 2. Keep it yourself as secret and privacy and once it reveals you feel sorry as you cannot take it back. 3. I feel relieve as I tell out and I could get some support. 4. It is hard to keep it secret as PD is a' going on disease ' and the tension of hiding it. 5. It helps more people to aware the diseases and encourage more support group i.e fund raising for the fund and learn to manage the disease and feel you are not alone. TEO KIM HOE
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wolfJoined: 08 Apr 2007Posts: 50
Posted: Thu Apr 12, 2007 7:54 am Post subject:

Hello, I noticed you come from Malyasia, To answer your questions I would need to know the customs and culture of your society. Only you can judge whether to open up or not. Here in America it is good to tell people of our PD, but not to overwhelm them or cry our troubles. There is always a balance between what is appropriate to tell and what to keep to yourself, and this is depending on the culture. Peace Jack

Exercises and movement

Posted: Thu Oct 18, 2007 4:20 pm Post subject: Exercise and Movement

Exercises and Movement I wish to share my experience while I am doing my exercise at Fitness Centre. As Parkinson's patient I found my breathing is too slow to catch up my body movement therefore I feel tired easily than the normal person. Exercise is good for Parkinson's patient however PD patients needs help to practise a skill: relaxation exercise to loosen the muscles and movement. TEOKIMHOE_________________to help the PD patients aware the diseases and encourage to set up support groups to educate the patients and their immediate families

Parkinson's Specific exercise plan restoring lives

Posted: Sat Dec 08, 2007 10:52 am Post subject: News: Parkinson's-Specific Exercise Plan Restoring Lives

Dear Friends, the following may be of interest. Best, Kathrynne ======================================================== Parkinson's-Specific Exercise Plan Restoring Lives http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/12-06-2007/0004717951&EDATE= COLUMBUS, Ohio, Dec. 6 /PRNewswire/ -- Since the spring release of his new book and instructional DVD, Delay the Disease - Exercise and Parkinson's Disease, David Zid delights in the positive response from participants whose lives are enhanced thanks to following his daily fitness program. Participants worldwide are thrilled that their Parkinson's symptoms have been minimized. "It might be overly dramatic to say exercise saved my life, but it certainly saved the quality of my life," boasts program participant Kathy Cooper. Zid, an ACE, APG certified trainer, designed the Parkinson's-specific program to exercise all parts of the body, focusing on balance, flexibility, strength and coordination. Nearly two years after being diagnosed, Kathy Cooper began the Delay the Disease exercise program. "I've noticed improvements in the way I walk and maintain my balance," explains Cooper. "I now take bigger steps and no longer seem to shuffle or limp. I smile 'normally' and my relaxed facial expression has improved." Participants are enthusiastic about the practical nature of the routine. Emphasis is placed on activities of daily living that frequently become a challenge to those with Parkinson's, such as rising from a chair, moving about in crowds, and getting in and out of the car. "The program has really helped me stand up from a seated position by using the 'nose over toes' technique," reports program participant Jerry Timmons. According to Zid, the most rewarding stories are the individuals who associate an improved mindset with the Delay the Disease fitness program. Though Cooper attributes multiple physical improvements since beginning the routine, "The biggest change is my mental outlook," she gloats. "My demeanor has improved so much that my overall reaction to this affliction has become almost dismissive. My small voice has been replaced with a stronger one and overall, I feel as good, or better, than my pre-afflicted self." Parkinson's professionals and those affected by the disease are grateful for the simplicity, organization and comprehensiveness of the exercise manual and DVD. The program empowers the patient to participate in their healing and cope with the difficult Parkinson's diagnosis. Marjorie Johnston, a clinical exercise specialist in Naples, Florida, has been conducting Parkinson's fitness classes for over ten years and is responsible for reviewing exercise programs for recommendation to her Parkinson's association. "The Delay the Disease program is the first program that I feel I can enthusiastically recommend to my organization and participants. The exercise inventory is excellent." The National Parkinson's Foundation Center of Excellence at Indiana University recently used a portion of their funding for a bulk purchase of books and DVDs to distribute to their patients to encourage daily exercise. Author David Zid leads a weekly class based on this fitness routine where Parkinson's participants discover fun, fitness and camaraderie. A portion of Delay the Disease proceeds is used to support Parkinson's research and development. The book and DVD are available for purchase at http://www.amazon.com/ or http://www.delaythedisease.com./_________________Best regards, Kathrynne Holden, MS, RD --

Constipation

Posted: Sat Dec 08, 2007 4:02 pm Post subject:

Constipation is generally intrinsic to PD rather than a side effect of medications. Of all PD meds, perhaps only anticholinergic drugs (such as artane) or maybe amantadine can worsen constipation. The others don't really cause it. We now realize that PD is a systemic illness that affects other parts of the body and not just the brain--the eyes, bladder, bowels, muscles, etc. There are dopamine containing cells in the bowels as well. I am attaching the constipation formula that we give our patients in case you are interested.... I. 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! Yours,_________________Hubert H. Fernandez

S'poreans live longer but suffer 8 years of poor health Health ministry study shows main causes of sickness are diseases that can be prevented early on. -->
Salma Khalik
Wed, Dec 05, 2007The Straits

(Dec 5) IF YOU needed another reason to lead a healthy lifestyle, here it is: A study shows that Singaporeans may be living longer now, but they are also sick for more years than people in some other countries.
The main culprits are heart disease and stroke, cancer, diabetes and even mental illness.
Now, the average Singapore woman should live to 81.8, but she will spend eight of those years ill or disabled. Men too will spend eight of their 78 years in poor health.
So while Singapore does well on life expectancy charts, a different picture emerges when good health is tracked.
The Ministry of Health study confirmed that a lot of suffering and premature deaths come from diseases that could be prevented - such as heart attacks, stroke and diabetes. Some cancers too could be caught early.
The prevalence of such diseases also suggests that more should be done to tell people what they can do to save themselves from becoming ill, said Dr Lam Pin Min, a member of the Government Parliamentary Committee for Health.
He called for more public education on how these ailments can be prevented, and screening to catch problems like diabetes and cancer early.
He added: 'With early detection of diseases, prompt medical treatment can hopefully minimise illness and medical complications.'
But health authorities can only do so much, argued unionist and Health GPC head Madam Halimah Yacob. People must take ownership of their health if they want to keep such illnesses at bay.
Her advice: 'Go for regular screening, eat more vegetables, less salt and do more exercise. That could cut the number of years you suffer from ill health.'
Dr Derrick Heng, deputy director of the Ministry of Health's non-communicable diseases branch said the study will guide the authorities on how to spend health resources.
But though it 'shines the torch' on diseases that cause the most suffering, the ministry will have to see which actually benefit from preventive measures.
The study will be repeated every three years, to track if the main causes of disability change, or are reduced, as the ministry puts in more effort to tackle them.
A surprising finding was how mental disorders count as much as diabetes and stroke for the wasted years. Mental health is getting a boost as the ministry has committed $80 million over the next five years to improving it.
Zooming in on problem areas could help Singapore catch up with countries that fare best - such as Japan, the top country in the world for long, healthy lives.
Japanese women live an average of 77.7 years in good health, compared to only 71.3 years for women here. Japanese men have 72.3 years of good health, compared to 68.8 years for Singapore men.
The ministry has already made the treatment and prevention of chronic disease a priority. People can now use money previously reserved for hospitalisation to treat diabetes, high cholesterol, high blood pressure and stroke.
The intention is to treat those conditions early before complications set in.
Unfortunately the programme has not been popular, said Madam Halimah. She suggested expanding the use of Medisave money to include an annual health check.
Men should also take a leaf from their wives.
Women all over the world live longer and healthier lives. The World Health Organisation (WHO) attributes it to their smoking less, exercising more and being more health conscious than men. As for Japan, its explanation is the low rate of cardiovascular diseases comes from their high-in-fish diets.
Madam Halimah said: 'We should also start eating more fish and less meat.'
salma@sph.com.sg

My dad has PD, I can't handle his decline

Posted: Mon Nov 26, 2007 10:25 pm Post subject: My dad has PD, I can't handle his decline.

I'm too prideful to seek formal counseling, I think. Maybe. I don't know. Amongst my friends, the people my age, I have older parents. I am only 21, but my parents are both in their 60s. That's not THAT old, but it means hings like Parkinsons affect me sooner. That, coupled with the fact that he was early onset, this is all happening way before it could for anyone else whom I would normally go to for support. As far back as I can remember, "Parkinsons Disease" was just something that my dad had. It happened so slowly, I didn't see it's effects. It's been around my whole life. I... I don't know how I am supposed to deal with this. Since I was 17, I've been a member of some teen support forums, and they can't help me. They are too "young" so to speak. All I get is that, "I don't know how that must feel, but you have my sympathies." I'm falling apart. I can't watch him fall. I can't watch at all.
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ahimsajackJoined: 25 Apr 2007Posts: 472Location: New York state
Posted: Tue Nov 27, 2007 11:21 am Post subject:

Khadgar, I empathize with you. PD is certainly a disease that robs us of our dignity if we let it. You will probably feel better if you focus on how your parents feel and how they are handling this. Yes, they and you are young, but your situation is not unusual. Try to put your heart and mind on them, and provide whatever love and support you are capable of. I find that I feel the worst when I worry about me, and I feel the best when I put my mind on others. It works!! Jack_________________We are what we think, with our thoughts we make our world.
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John ShJoined: 05 Mar 2007Posts: 101Location: Arroyo Grande, California
Posted: Tue Nov 27, 2007 6:40 pm Post subject: Khadgar

My opinion. Talk to your dad if you can, and also, start seeing someone, let go of the pride thing, you might as well join the rest of the human race, I am 67 and I see a therapist that is probably 45, it's comforting. It's a woman by the way. My heart goes out to you, but I know you need more then that. John
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zmunnJoined: 02 Mar 2007Posts: 60
Posted: Tue Nov 27, 2007 9:21 pm Post subject:

Khadgar, Well, I'm 54 and my PWP mom is 77 and it's not at all easy for me either, so it's not just your age. It just IS hard to see a loved one decline. One of my brothers copes by staying away, the other by calling regularly to tell my mom silly but entertaining stories about his cat. I have coped by moving my mom to a nursing home in my own town so I can see her daily and oversee her care. You'll find a way, but you'll be more helpful to your dad if you can get yourself in better shape. For most of us that means counseling from someone outside your family and friendship group. I hope you will consider that. There's no real benefit to your dad or yourself in your falling apart. My best to you, Zae
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MamaGullJoined: 16 Mar 2007Posts: 21Location: Washington state
Posted: Wed Nov 28, 2007 3:17 am Post subject: Re: My dad has PD, I can't handle his decline.

Have you looked around for Parkinson's support groups - not necessarily a group for folks your age, but for family members of PWP's. Depending on where you live, there are quite probably some excellent resources to lean on. My PWP and I learned that support groups of your peers - others who have walked in the shoes that you are just now learning to wear - was a life-saver. Our son was diagnosed with a serious mental illness when he was 19, and this sort of thing can easily tear a marriage apart. We found a group of people who had family members with equally debilitating mental diseases, and through those people we learned how to cope. We were given survival techniques, and lots of encouragement. There are all sorts of lists on the PD websites, and my recommendation is to hunt up a support group. Attend a meeting or two - if you don't feel 'right' with one, try another. As you've found out, PD isn't something that you can deal with alone - and the more help you can get from caring, understanding folks, the better you'll be able to manage AND to help your Mom. Best wishes - Sharon 56 CG to 65 PWP
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KhadgarJoined: 26 Nov 2007Posts: 2
Posted: Wed Nov 28, 2007 12:09 pm Post subject: Re: My dad has PD, I can't handle his decline.

MamaGull wrote:
Attend a meeting or two - if you don't feel 'right' with one, try another.I had attended a support group for caregivers that was local to my area, and everyone there was like, 20 years older than me. It was a downer. But, like zmunn said, maybe it's not my age. It feels like it is most of the time. Well, not the sole cause, but a catalyst. I don't know. My family dynamic is not that of open discussion. My dad is really stubborn, and it's taking forever to work him down from being so. I mean, I know that's normal. He doesn't want to give up his independence, I got that. It just seems that whenever I try to bring something like this up, this aura of doom fills the room and I am compelled to shut up. Difficult conversations -- are difficult. The more I think about it, the more I think it is not really pride. The thoughts are: If I go to a support group or a therapist, that is telling my dad, "You are causing enough stress in my life that I am going crazy and need professional help." He blames himself for everything, I'm almost positive he'd find a way to feel bad about that. Argh! I don't know. ...Thanks everyone.
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MamaGullJoined: 16 Mar 2007Posts: 21Location: Washington state
Posted: Fri Nov 30, 2007 3:35 am Post subject: Re: My dad has PD, I can't handle his decline.

Reading your last post, I thought I'd take a different approach. How about I float a few ideas past you? (point of reference, I'm 56, husband is 65 and was diagnosed 3 years ago; our son is 29) Do you feel the need to seek counselling, or to attend support meetings to help YOU, or to help you communicate better with your father? Do you and he communicate well about things other than PD - your school, activities, things he likes? I'm no help about communicating with dads that can't open up, mine is the same way, and after too many years I've quit trying. But I have learned a few things from him.... I haven't met very many guys that don't have a stubborn streak somewhere, some are just a whole lot more obvious about it. The more stubborn, the harder it is for these guys to open up (or so I've found), and there is too frequently a pointed avoidance of seeking medical attention, no matter how serious the situation. Sometimes stereotyping happens because we've seen the same behavior repeated by the same group of people over time - nothing judgemental, just making the observation. That said; it is VERY difficult for any man to be told that 'the life you expected to live ends today; you now have a degenerative neurological disease that will, over an undetermined period of time, rob you of your dreams'. Any research into PD makes that even worse - learning that at some time in the future things you take for granted may turn into daily struggles - swallowing is the one my husband finally admits that he fears. We know of the most common - walking is the big one, talking is a problem as well. There are many more. Talking about PD is twice as hard as anything else; if you talk about it, that implies that you have accepted it (and all of the implications as well) in your own mind. There seems to be way too little gray territory - too many people live in black or white. "I've got PD, I'm going to end up in a wheelchair with a feeding tube and a catheter, unable to communicate because my voice will be gone, for all intents and purposes a vegetable." You and I know there is at most a grain of truth in some of this, but the picture will be far less bleak than the imagination... It has taken me a while to sort out the approach to discussing PD with my husband - I don't ask him pointed questions about it. He knows that I'm involved with an online support group for PD caregivers, and I found that if I just talk about some of the things that others are running into, he starts to open up to me. The other time that he opens up is when we are driving - fewer distractions and nobody else can overhear our conversation. Let me know what you think, okay?
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Parkinson's is not the end

Posted: Sun Nov 18, 2007 11:20 pm Post subject: Read This. Parkinson's is Not The End

A Good Evening to you all. For those that do not know me, I have Progressive Supranuclear Palsy. It is under the "Parkinsons Plus" umbrella. It progresses much quicker than Parkinsons and is normally terminal. It is what killed the Actor Dudley Moore. I probably have 6 months before I cannot type anymore. I am legally blind now and have all but lost my voice. I have retrocollis dystonia and fall backwards. I have eye, shoulder and neck surgery coming up. I am 49 years old. Here is my message, then a true life story of one night with this disease. My message is don't give up on one another. See one another all the way through. Have hope and know brighter days are here if you want them to be. Choose brighter days and live your life well. Don't let Parkinsons define you. Now the Story: Last night, I awoke, thinking I heard sounds coming from our living room. I heard a voice calling out "Mom". I tried to move but could not. Then tried to reach to alert Tammy, but my arms would not move. I could not speak. The sounds were still there, footsteps, shuffling around type noises. I remember yelling, though knowing that no sound was coming from me. Finally, I was able to move my legs over the side of the bed and fall to the floor. I could not stand, so crawled from the bedroom to the living room. I sat up against the wall and took a good look around. Nobody was there. I felt someone run fingers through my hair. Thinking it was Tammy, I tried to look up, but my eyes would not open (eyelid apraxia) right away. When finally my eyes opened, there was no one there. Something told me to check my blood-sugar. I crawled to the cabinet, pulled myself up and retrieved my tester. I have been diabetic for about 4 years. Never overweight, always ate smartly, it came from nowhere. The meter indicated "49", almost coma stage for me. I checked it again, and the result was the same. I felt I could walk and started toward the refrigerator. I was wrong and fell backwards hitting the floor hard. I was dazed but still conscious. I heard someone scream behind me, but something told me it was not real. I was thinking "this is it". I crawled to the refrigerator without bieng able to see. I could not reach the orange juice, but felt a can and opened it...it was Coke. I drank it and was able to feel a bannana and ate it. Within 20 minutes, I felt much better. Diabetes and PSP almost killed me. I cannot tell you how good it feels to still be here.
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wheelersceJoined: 02 Mar 2007Posts: 222Location: MI
Posted: Mon Nov 19, 2007 7:41 am Post subject:

Richard, We're glad you're still here, too! Your heart-rending story puts things in perspective and I am speechless before the faith-filled attitude that squeezes through your posts! You're on my prayer list. Sue W.
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RichardJoined: 18 Aug 2007Posts: 31
Posted: Mon Nov 19, 2007 8:03 am Post subject:

Thank you Sue. I am rich, in the sense I have deep love from family and laughter is an everyday occurrence around here! Of course, above all, is the peace I have from God. No regrets. I pray the same for you this morning and wish you all the best in this upcoming Holiday Season.
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walkingbyfaithJoined: 06 Mar 2007Posts: 14
Posted: Mon Nov 19, 2007 10:13 am Post subject:

Richard, What an inspiring post. Your attitude is what I want for myself and my PWP. God Bless!_________________Walking By Faith
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RichardJoined: 18 Aug 2007Posts: 31
Posted: Mon Nov 19, 2007 10:41 am Post subject:

Thank you Walking By Faith! Your Post Title says it all. Thank you for the Blessing, know that it is returned. Here is wishing the best for you and family during this upcoming Holiday Season.
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kmcclungJoined: 05 Mar 2007Posts: 41Location: Michigan
Posted: Mon Nov 19, 2007 11:46 am Post subject:

Richard, The truth is much more interesting than fiction. Thank you for sharing a very personal and profound part of your life with us. Ken
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RichardJoined: 18 Aug 2007Posts: 31
Posted: Mon Nov 19, 2007 12:46 pm Post subject:

You are welcome Ken. I would like to hear some of the stories all of you have with your trials in Parkinsons. It gives me hope to see others overcome, knowing what they have been through.
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Rogerstar1Joined: 14 Mar 2007Posts: 136
Posted: Mon Nov 19, 2007 1:59 pm Post subject:

Good afternooon, Rich. I'll share one with you (in two parts) but for myself, prefer not belaboring it in a play by play for the simply curious, morbid onlookers. Having lived the sequence hours ago and knowing I'll be doing so again shortly and forever isn't my cup of tea. "On" time is too valuable for that but not too valuable to answer your request. So many of us have these same little 'moves' like you mention. We're obliged to invent & master them to accomplish things we never gave a thought to in our earlier lives and/or stages. When I awaken after a three hour sleep segment I'm essentially paralyzed and on my good side facing like a little partial wall of knotty pine. This is the exact position I fell asleep in the 180 minutes +/- earlier. My eyesballs move but lack sufficient moisture so feel like sandy or scratchy as I consult my clock radio which is 'on' and nearby, tuned to rebroadcast the previous days NPR or CNN programming. I've drooled a good amount so the pillow case is soaked around my mouth. My left arm hurts and can't be moved, used, braced with....nothing at all without shooting pain. In other words it can not be flexed or muscle used. I have an apparent need to urinate but not urgent....enough to know I can't just lie there. Turing over and flopping with the help of gravity just as you describe requires me to either turn over in the bed rolling myself face down in the pillow or the other direction...face up towards the ceiling. Rolling face down is the harder and riskier because at mid operation with me face down into the pillow which has a waterproof liner under pillowcase I can become completely stuck which is sufficating and can last several minutes. Recall I have neck problems when unmediacted. So I usually go the other way: face to ceiling. To do this I swing one leg out over the edge of the bed behind me and stretch it way far out, elevated. This would be my left leg. This produces a cantilevering effect which after half a dozen tries enables me to wrench and slide/scoot my torso around and eventally drop down so that both knees are now resting on the floor, my torso, chest on mattress is across the bed. I suspect you know excatly what I'm talking about here. Time elapsed since opeinng my eyes? eight or ten minutes if I've worked diligently. With but one arm and hand that will move by muscle exertion, peeling a banana is out of the question. Indeed gravity unassisted motion being impossible or nearly so, tasks requiring fingers are not really possible at this point. I guess I could take a pill at this point...I keep several stashed at key places around my bed and living spaces for emergencies. I don't start dosing immediately. To be continued in a second installment. best wishes from Roger
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pokermidJoined: 18 Jul 2007Posts: 134
Posted: Mon Nov 19, 2007 5:30 pm Post subject:

Richard and Roger I am lost for words. when i feel at a low ebb, I shall read these postings again to give me a reality shake. What Inspiration!!!!!!!!!!!!!!!!! I doff my hat to such fantastic resolve. poker
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RichardJoined: 18 Aug 2007Posts: 31
Posted: Mon Nov 19, 2007 5:47 pm Post subject:

Roger, we both are in a bad way...physically. Your mind is still very sharp, even if you feel you have lost some. You write as well or better than any person of author that I am familiar with. You should write a book on this disease with your perspective. No joking here, you have what it takes! Has your home been modified to help? What assistance do you have? Hopefully, you are not one of those independent stubborn types who won't accept help. With your symptoms and struggle, it will not be long before you have to change some things. What do the Docs say about your curling? I ate the bannana with peel (left a lingering aftertaste):) Richard
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granniDJoined: 21 Oct 2007Posts: 38Location: Calgary Alberta Canada
Posted: Mon Nov 19, 2007 6:02 pm Post subject:

Richard, MY God man you are brave and so in touch with the "real things" in life. I can't tell u how much I connect with your words and feel ashamed of myself for whining and being a sissy. Thanks from the bottom of my heart. I wish your strength and courage and all the love of everyone that knows you will continue to carry you on through the rest of your journey. GranniD
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cowboyJoined: 03 Oct 2007Posts: 121
Posted: Mon Nov 19, 2007 6:14 pm Post subject:

Thank you GranniD. I appreciate your encouragement and kindness. I read your posts and have not heard a single whine yet!! You have discussed symptoms of Parkinsons everytime. How are you doing this fair Monday?
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pokermidJoined: 18 Jul 2007Posts: 134
Posted: Mon Nov 19, 2007 6:25 pm Post subject:

eh????? cowboy...............why are you answering for richard? confused pokermid
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leonardJoined: 04 Mar 2007Posts: 150
Posted: Mon Nov 19, 2007 10:27 pm Post subject:

Richard...I had a friend who had PSP. It truly is a devastating illness and I have a feeling of whagt you're dealing with...the WAY you're dealing with it is a model we can draw on to deal with what we have. You live your life with great purpose. I am grateful for you sharing that with us. Leonard
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Rogerstar1Joined: 14 Mar 2007Posts: 136
Posted: Tue Nov 20, 2007 12:43 am Post subject:

To conclude. It has always been easier for me to rise to a standing position once I've made it to my knees. Off the side of the mattress I can stand up, make use of the urinal with some difficulty and from there decide if I'll be up for a while or try for another sleep segment. I take very few Ambien sleeping tablets so this decision usually turns on if I took one 3 hours earlier and it is providing drowsiness or if there is something I want to do or need to do in which case I start the active part of my day. If the latter I'll start the very slow shuffle to the staircase by basically falling and catching myself by right arm at key points. I have the perfect house for this. A forward step is about 1 to 3 inches. Descending the staircase is ok but I creep into the living room. I never fall but your cautionary advice is well taken. My first morning pill has its most dramatic impact if I avoid food until it takes hold. Generic 25/100 Carbidopa-Levo tabs last about three hours each until 1:00 pm. Then shorter and shorter intervals and an Amantadine at around 3:00 PM to smooth out a little of what otherwise becomes quite bad flailing about. A second Amantadine seems to help nowadays. Azilect is discontinued. From 4 to 8 or 9 pm is MISERY writ llarge. I kinda nibble pills on an as needed basis or descend into alot of pain...and really do in any case. Neck twisting and head to one side, breathing difficulty due to tightness originating in solar plexus area. By later evening I settle down quite a lot. But during that horrible stretch things are not good here. During this period The News Hour With Jim Lehrer comes on PBS. At 6:00 PM on one station and at 7:00 PM on another. Same show. I used to watch it once and get 100%.. Now I watch both shows and get a total of about 75% because my mind wanders so much. Fortunately it wanders to the most pleasant thoughts. Or at least satisfying ones. Never any hallucinations or panic attacks. No forgetfulness. But my ability to maintain concentration during this period is quite simply gone. Mental health is otherwise sound I like to think :-). Not sure what you mean by curling. Only curling I have is sometimes when sinemet kicks in and my toes curl. I think most people have this when wearing off. Neurologist has not told me that my PD has become PD-plus. She says she is checking that when she evaluates ability to move eyes/gaze up and down. So that about sums it up here. I'm happy to have shared a glimpse of things I deal with and hope it can serve some positive purpose for you Richard, and anyone else who passes this way. Roger
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ages and stages: Alzheimer's and Parkinson's

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Kathrynne Holden, MS, RDJoined: 22 Jan 2007Posts: 94Location: www.nutritionucanlivewith.com
Posted: Sat Oct 27, 2007 5:42 pm Post subject: News: Ages & Stages: Alzheimer's & Parkinson's

Dear Friends, the following may be of interest. Best, Kathrynne ======================================================== Ages & Stages: Alzheimer's & Parkinson's http://www.wistv.com/Global/story.asp?S=7267260&nav=menu36_3 from the National Women's Health Report, "Women & Neurologic Conditions" Here's something you never would have a heard a neurologist say about Alzheimer's 10 years ago: "This is a really exciting time." Or about Parkinson's disease: "We're doing really well." Yet that's just what Carol Lippa, MD, of Drexel University's College of Medicine in Philadelphia, and Jayaraman Rao, MD, of the Oschner Clinic Foundation in New Orleans, had to say about their respective specialties. Let's start with Alzheimer's disease. More women than men are diagnosed with Alzheimer's, a disparity that's long been attributed to the fact that women live longer than men. But above and beyond age, says Dr. Lippa, it appears that women are slightly more susceptible to the disease. "It's likely related to estrogen in some way," she says-either low levels of estrogen as women get older or the sudden drop in estrogen that occurs during menopause. Does that mean that supplemental estrogen is the answer? Probably not. The Women's Health Initiative (WHI) study found that estrogen, alone or with progestin, increased the rate of dementia, including Alzheimer's disease, in women 65 and older. It also didn't protect against mild cognitive decline. Those findings have led some experts to suggest maybe it isn't estrogen that's to blame for the gender disparity in Alzheimer's, but luteinizing hormone, which regulates estrogen in the body. Postmenopausal women and older men have much higher levels of this hormone, and people with Alzheimer's have levels twice as high as those without the disease. Plus areas of the brain most likely to be destroyed in Alzheimer's disease have large numbers of receptors for luteinizing hormone. This is important because it provides another clue to the underlying causes of the disease, which we need to develop treatments. The reason Dr. Lippa is so excited about Alzheimer's today is that she sees exciting new treatments coming in the next few years. For instance, several trials of vaccines are ongoing that stimulate the immune system to view beta amyloid plaques-the hallmark of the disease-as foreign bodies and attack them. However, no definitive results have been shown so far. We're also learning more about preventing Alzheimer's. For instance, there appear to be clear links between high blood sugar and the disease. So some studies are investigating whether existing diabetes drugs might help improve the way the brain uses glucose, reducing the risk of the disease. Plus, observational studies suggest that anything that reduces the risk of heart disease also reduces the risk of Alzheimer's, including following a healthy diet, reducing cholesterol and blood pressure levels, losing weight and getting more physical activity. "A heart-healthy diet is a brain-healthy diet," Dr. Lippa said. Parkinson's disease has also reached a watershed in terms of our understanding and treatment of the disease, says Dr. Rao. Parkinson's disease is the second most common neurological degenerative disease after Alzheimer's, affecting about 1 million Americans. The disease results from the loss of dopamine-producing brain cells in selected brain areas. The primary symptoms of Parkinson's are loss of motor control, resulting in tremors, muscle stiffness, slow gait and the inability to control certain muscular movements. Like Alzheimer's, Parkinson's is a disease of aging, with the number of people affected expected to double over the next 20 years. Unlike Alzheimer's, however, it is more prevalent in men than women. Today, in addition to a plethora of medications to treat the underlying lack of dopamine and Parkinson's symptoms (including rigidity, restless legs and insomnia, etc.), there are several nondrug approaches. The most exciting one is deep-brain stimulation, in which electrodes are implanted in the area of the brain responsible for the movement disorders. The electrodes are connected to a device about the size of a half dollar called a pulse generator that is programmed to electrically stimulate the brain. These electrical signals block the abnormal nerve signals that cause tremor and other Parkinson's symptoms. However, most treatments only address the symptoms of the disease, says Dr. Rao. What he's excited about are new treatments focused on arresting its progression. "If you slow the progression even marginally, the quality of life we can give these patients for a longer time is really improved." References Shumaker SA, Legault C, Rapp SR, et al. Estrogen plus progestin and the incidence of dementia and mild cognitive impairment in postmenopausal women: the Women's Health InitiativeMemory Study: a randomized controlled trial. JAMA. May 28, 2003;289(20):2651-62. Webber KM, Casadesus G, Atwood CS, Bowen RL, Perry G, Smith MA. Gonadotropins: a cohesive gender-based etiology of Alzheimer disease. Mol Cell Endocrinol. Jan 2, 2007;260-262: 271-5. Epub Oct 18, 2006. Nutt JG, Wooten GF. Clinical practice. Diagnosis and initial management of Parkinson's disease. N Engl J Med. Sep 8, 2005;353(10):1021-7. http://www.wistv.com/Global/story.asp?S=7267260&nav=menu36_3_________________Best regards, Kathrynne Holden, MS, RD -- For a Parkinson Tip of the Day visit: http://www.nutritionucanlivewith.com/
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