HeroTeo - The Parkinson’s Fighter

Tue Apr 24, 2007 11:47 pm Post subject: Wrong diagnosis of Parkinson disease

My mother was treated for Parkinsons based on the symptoms.

She was taking medicines for 6 years. Last couple of months we stopped the medicines as Doctor felt that she is not a parkinson patient.

We can able to see slight improvement.Can anyone tell me what is the effect of taking medicines without Parkinson?

Will it create real parkinson? Please help me.
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Dr. OkunJoined: 19 Jan 2007Posts: 251Location: University of Florida
Posted: Wed Apr 25, 2007 6:33 am Post subject:

In general we believe that there are no ill effects from taking medicines for Parkinson if you do not have it, however this topic has not been thoroughly researched. We are always concerned that taking high doses of medicine early in Parkinson may prime the system later for complications, although this doesn’t happen much anymore in practice. The theoretical concern would be exposure to PD drugs and then later developing PD—would the system be primed in some negative way. We don’t know. In short I believe you will be ok and should not worry too much about this. Be sure you have seen a movement diosrders neurologist as I have seen several cases where they discontinue medications and 5 years down the road a specialist diagnoses PD…the trick was how the meds were administered._________________Michael S. Okun, M.D.
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Advice for caregivers

Parkinson’s disease does not affect just one person - family and friends all have to ‘live’ with Parkinson’s too.

A caregiver is someone - partner, spouse, friend or adult child - who lives with, regularly helps or looks after a person with Parkinson’s disease, but not as a paid job.

Just because you are a partner or relative of some body with Parkinson’s does not always mean that you will necessarily be their caregiver.

Being a caregiver can be physically and emotionally challenging so you should notfeel guilty if you are unable to take on this role. As an alternative, it may be worth considering using voluntary or paid help.

You may want to find out more about making your home a more comfortable environment for the patient.

How can I support my relative or friend with Parkinson’s disease?

Ideally, try and take an active rather than a passive role in Parkinson’s. Work with the person you are caring for to learn all about the condition - its causes, symptoms and treatments. The more you understand, the easier it will be to work through day-to-day problems.

In your role as caregiver you are a central part of the health care team ensuring that the person with Parkinson’s can receive the best treatment possible.

To find out more about Parkinson’s you may find it useful to investigate other areas of this website.

Other good information sources include Parkinson’s disease society magazines, books, news articles, websites and local patient organizations.

Try to find the most knowledgeable and experienced physicians and health professionals in your community - people with a real interest in Parkinson’s disease.

It is important that the person with Parkinson’s disease visits their doctor regularly for check ups.

Whenever possible, go with them so that you can discuss any symptoms, observations or concerns that you may have with their doctor Physicians, nurses, occupational therapists, physiotherapists, dietitians, speech and language therapists and social workers are just a few of the people who can help you with the many aspects of providing care for someone with Parkinson’s.

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Managing Parkinson’s disease

Parkinson’s is a common neurological disorder that is thought to affect more than four million people world-wide.
Parkinson’s is a slowly progressive disorder that is life altering, but is not life threatening. Recent advances in medications and surgery mean that doctors and patients now have better control over the condition than ever before.
Not everyone will experience exactly the same Parkinson’s disease symptoms at the same time. The disease can affect everyone very differently and in some cases it

My educational journey
may be many years before there is any disability or significant limitation of daily activities.Your doctor will recommend a particular treatment depending on your specific symptoms. Not everyone will receive the same medications, and in the very early stages of the disease you may not need any medication at all.

How is a diagnosis of Parkinson’s disease made?

Parkinson’s disease is most frequently assessed on the basis of your current symptoms; these assessments cannot tell how the condition will evolve over time or how you will respond to treatment.Classic diagnosis is made on the basis of whether symptoms are improved by adding levodopa.In addition to a clinical assessment, your doctor or specialist may use one of two disability rating scales. The first scale is quite a simple scale: the Hoehn & Yahr, named after the two doctors who devised it in 1967.The Hoehn & Yahr scale allocates stages from 0 to 5 to indicate the relative level of disability you are experiencing

.The Hoehn & Yahr stages0: No visible symptoms of Parkinson’s disease 1: Parkinson’s disease symptoms just on one side of the body 2: Parkinson’s disease symptoms on both sides of the body and no difficulty walking 3: Parkinson’s disease symptoms on both sides of the body and minimal difficulty walking 4: Parkinson’s disease symptoms on both sides of the body and moderate difficulty walking 5: Parkinson’s disease symptoms on both sides of the body and unable to walkImportantly, the Hoehn & Yahr scale was devised to support the introduction of most current Parkinson’s disease treatments.

It was intended to include the entire range of Parkinson’s states. Parkinson’s does not necessarily progress to the more advanced stages (stages 4 and 5).A more detailed scale - the Unified Parkinson Disease Rating Scale (UPDRS) - has been widely used by specialists, particularly in research studies of new treatments. The UPDRS includes a wide range of assessments, using 42 questions divided into four main subsections:

I. Meditation (ability to process thoughts), behaviour and mood II. Activities of daily living (during both ‘on’ and ‘off ‘ periods) III. Motor examination IV. Complications of therapy (that have occurred in the last week)

In addition to assessing mobility, doctors can also use quality of life scales to gain a better understanding of how troublesome your Parkinson’s disease symptoms are and how you are feeling. The PDQ-39, so called because it is made up of 39 questions, is a quality of life questionnaire that has been developed specifically for Parkinson’s disease.
Together, these disability and quality of life scales can be used to help gauge Parkinson’s disease, its impact on daily life and its response to treatment.
Another important technique is functional imaging. Functional imaging provides structural images of the brain using techniques such as computed tomography (CT) or magnetic resonance imaging (MRI) scans. It is possible to look at images of the brain chemistry by administering tiny doses of radioactive substances that concentrate in specific parts of the brain.
These techniques are callewhom the diagnosis is uncertain.
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Treatment wearing-off

Levodopa remains the cornerstone of any long-term Parkinson’s disease treatment plan. However, its ability to control the symptoms of Parkinson’s can become reduced over the years. You may begin to experience what is known as ‘wearing-off’ where your symptoms begin to re-emerge before it is time to take your next scheduled dose.When experiencing ‘wearing-off’ you may notice changes in your movement and mobility, thoughts and feelings, sensations and your overall sense of well-being.For example, you may find that your Parkinson’s symptoms begin to re-emerge or become noticeably worse before it is time to take your next scheduled dose of medication. This re-emergence of symptoms is called ‘wearing-off’.If you are concerned that you might be experiencing “wearing off”, an quick and easy way to find out is by using the wearing-off question card. If you answer one or more of the 19 symptom-related questions with “I experience symptom” and “symptom improves after my next medication dose”, it might be helpful to discuss “wearing-off” with your doctor at your next visit.
What is meant by treatment wearing-off?

Wearing-off refers to the re-emergence or worsening of a Parkinson’s disease symptom, commonly occurring two or more hours after a dose of levodopa medication. These symptoms usually improve or resolve once the next dose of levodopa medication takes effect.
Because Parkinson’s disease is a movement disorder, attention has focused on problems with movement - known as motor symptoms - as these are the cardinal symptoms of Parkinson’s disease and can be easily identified.
Motor symptoms include tremor, rigidity or muscle stiffness and slowness of movement or ‘bradykinesia’.
The tools used by clinicians to identify wearing-off during a clinical assessment mainly focus on the return of these motor symptoms. However, you may experience other symptoms when your medication ‘wears-off’ that aren’t related to movement, and are consequently less obvious. These symptoms of Parkinson’s have been classified as non-motor symptoms.
However, you may experience other symptoms when your medication ‘wears-off’ that aren’t related to movement, and are consequently less obvious. These symptoms of Parkinson’s disease have been classified as non-motor symptoms. Non-motor symptoms can include changes in thoughts and feelings, sensations and sense of well-being and changes in autonomic nervous system functions (e.g. sweating). Although non-motor symptoms may not be as obvious as motor symptoms, they are no less important. On the contrary, non-motor symptoms can actually be more bothersome and disabling than motor symptoms.
Wearing-off can include both motor and non-motor symptoms. Your doctor may not recognize non-motor symptoms of wearing-off as easily as motor symptoms, because they can be quite subjective. Also you may interpret these non-motor symptoms as being part of the normal course of the disease and may not recognize the link to medication doses. You can help your doctor to identify non-motor symptoms by providing a description of how and, importantly, when these symptoms occur, to help your doctor identify these symptoms, as they can be improved if recognized and treated.

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wolfJoined: 08 Apr 2007Posts: 50
Posted: Sun Apr 22, 2007 5:04 pm Post subject: My PD progression

I am 63 years old as of last February. I was Dx’ed in2003 with PD.

I am enclosing a list of symptoms and there time of starting.

I would appreciate any and all comments. I take only Bindery to ameliorate the tremors.

Symptom Started Anxiety and depression 1977 resting tremor on right side 1980 “freezing” of left foot 1980

weakening of arms 1995 micrograph’s 1995 walking “tip toe” 1995

constipation 1998 slight bradykinesia 1998 arms do not swing walking 1998 resting tremor both sides

2000 poor balance

2001 retropulsion 2001 frequent falls 2002 difficulty standing up from sitting

2003 loss of range of neck turning 2003 “pill rolling” in sleep

2004 reduced range in arms 2004 Two hour naps every day 2004

difficulty putting on shirts 2005 shouting or grunting in sleep 2005 shuffling gate inside 2005 memory and cognitive deteriorating 2005 moderate bradykinesia

2006 stiffness all over body 2007

Thank you, and please comment. Jack
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Anonymous
Posted: Tue Apr 03, 2007 2:51 pm Post subject: Q: bowels

I have had troubles with my bowels for a least 4 yrs, my trouble is , Idont get the urge to go like use too. before if I had to go, I would feel it coming on then i would go to the bathroom sit down on the tolit and go. now I dont get that urge i just feel bloated. this all started in 2000 after I retired. 1 year later I come down with parkinsons.when I sit down on the stool now I dont have any pushing power even when is soft. I drink a cup of chinese green tea witch has senna in it to get that urge to go. Its like my muscles of the recutum are effected like the pd that effects my legs no strength.or If I use a small rubber bulb to squirt some water in to my rectum , to prime it so to speak, i’ll pass a stool. Thats not normal.I drink 8 glassees of water a day, 1 glass of prune juice in the morn.and that helpes to keep my stools soft but doesn’t help with the other problem. no blood in stool no cramps or pain Do you have any advise? I exercise every day ‘70 years old ii worked out all my life Thank you Mr johnson
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Kathrynne Holden, MS, RDJoined: 22 Jan 2007Posts: 94Location: www.nutritionucanlivewith.com
Posted: Wed Apr 04, 2007 4:41 pm Post subject:

Dear Mr. Johnson, No, this is not a normal condition, you’re right. But it’s also not uncommon among folks with PD. PD can affect the muscles that control peristalsis (movement) of the gastrointestinal tract, including the colon. The muscles slow down, and the stool then moves abnormally slowly. It can also slow or stop the muscles of the anus, so that the urge or ability to expel the stool is lost. You’re doing all the right things – drinking plenty of fluids to keep the stool soft, prunes/prune juice to provide laxative effect, and exercise to keep the GI tract as strong as possible – and I strongly urge you to continue all this, even though it doesn’t seem to be working. All these things truly ARE helping, even though the ability to expel stool is weakened. The water not only keeps the stool soft, it keeps your entire body hydrated, and dehydration is a very common, and debilitating, occurrence, in PD. The exercise not only helps stimulate the colon, it keeps you supple and your bones and muscles strong. If it takes a water enema to “prime” things, that’s OK – I know it’s not the first choice or the easiest, but it is helping you to move the stool. Next, talk to your neurologist; there is a laxative specially designed for those whose constipation is caused by slowed peristalsis – Miralax. It’s not ideal to take a laxative, but sometimes it’s necessary, and Miralax may be a better choice for you than senna. It is available by prescription, and your neurologist should be very familiar with it. Good luck to you, and keep on doing all those excellent things, you are a great example to us all!_________________Best regards, Kathrynne Holden, MS, RD — For a Parkinson Tip of the Day visit: http://www.nutritionucanlivewith.com/
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News: Learning to live with Parkinson’s disease


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Kathrynne Holden, MS, RDJoined: 22 Jan 2007Posts: 94Location: www.nutritionucanlivewith.com
Posted: Tue Apr 03, 2007 7:13 am Post subject: News: Learning to live with Parkinson’s disease

Learning to live with Parkinson’s disease By Tom Nichols http://www.gainesvilletimes.com/news/stories/20070402/opinion/165134.shtml Two years ago, I was diagnosed as having Parkinson’s disease, the second most prevalent neurological disease in the United States, coming after Alzheimer’s Disease. About a million Americans have Parkinson’s. I meet more and more people who have a relative or friend with this disease. Here are my reflections on the disease. First of all, Parkinson’s is not fatal. People do die of other diseases that may have been made worse by Parkinson’s, but people do not die of Parkinson’s itself. Here is how it develops: Some brain cells near the middle of the brain in an area called the substantia nigra begin to malfunction and then die. These cells produce a chemical called dopamine, which is a chemical traffic cop that coordinates various parts of the brain that control muscle movement As these cells die faster than they are replaced, the effects on muscle movement intensify. Perhaps the most visible aspect of Parkinson’s is for some limb of the body to shake. In my case, it is the fourth finger of my right hand that is almost always trembling, sometimes very little, sometimes more, especially when I am tired or worried. The other major result of Parkinson’s is that the muscle freezes and refuses to move at all, or very slowly. The very first symptom I noticed was my fingers froze straight flat when I was playing my saxophone at a rehearsal of the Believer’s Band at First United Methodist Church. Several of my fingers refused to push the keys down to make the note I was trying to play. I had to take the other hand and force the fingers to curve so I could continue to play. I knew this was a problem but my general physician did not recognize the disease. I was misdiagnosed for about four months. A neurologist found I had Parkinson’s. Now I am a patient of Dr. Stewart Factor of the Emory University Parkinson Clinic in Atlanta. Dr. Factor is a specialist doing research on Parkinson’s. He invited me to be part of two studies being conducted by the Michael J. Fox Foundation. Both studies are trying to discover any possible causes for this disease. I am honored to have participated. There is no cure for Parkinson’s. It is a progressive disease. If it strikes a young person that individual has a longer time for the disease to progress. Only 15 percent of all Parkinson’s disease patients are under age 50. I was lucky to be 77 when I found out I had the disease. This is my advice to someone who may have symptoms of shaking or freezing muscles: Find a specialist physician who can prescribe an extensive medical program to keep the symptoms under some type of control. If you become overmedicated, you can easily go into a major shaking fit, and you don’t want that. If undermedicated, a Parkinson’s patient will have more exaggerated symptoms. Some medications work well with one person and not another. So each patient has to find the right balance of medications, the right strength of them, and the right times to take them. I take my meds three times each day, and carry them with me at all times. Besides finding a specialist, I recommend that a person new to the disease might wish to explore a support group. I belong to two such groups, one for cancer and the other for Parkinson’s. Since my cancer is very slow growing and I am under no medication or treatment for it, I don’t have much to contribute to the cancer support group at First Presbyterian. But I do enjoy meeting with them when possible. I am an active member of the Lake County Shakers, a Parkinson’s Disease support group of close to 40 members at St. Paul’s Methodist. About half of the members of this group have the disease, and the other half are their caregivers, usually a spouse. The group meets first and third Thursday mornings at 11 a.m. in a classroom at St. Paul’s. We exchange information about our individual medications, and have guest speakers describe topics related to living with Parkinson’s. And finally, we take fun trips, like our recent trip to the Cherry Blossom Festival in Macon. If interested in attending a session, you are welcome. Call Marie and Bob Bridges at (770) 532-8849 or Louell and Ray Roper at (770) 967-4276 for more information. Parkinson’s is not fatal, but it does affect quality of life for those living with it. One can easily get depressed as the disease progresses, but in a support group you find love and understanding from those whose lives have been changed but not destroyed by the disease. I can tell my disease is progressing, but I have not been forced to change my life much. Living with Parkinson’s is not easy, but it is far better than the alternative of not living. Tom Nichols is a retired college professor who lives in Gainesville; e-mail, wtomnichols@charter.net. http://www.gainesvilletimes.com/news/stories/20070402/opinion/165134.shtml_________________Best regards, Kathrynne Holden, MS, RD — For a Parkinson Tip of the Day visit: http://www.nutritionucanlivewith.com/
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NPF Home Help
Length of Use for Sinemet


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Anonymous
Posted: Mon Apr 23, 2007 10:21 pm Post subject: Length of Use for Sinemet

Dear Doctors: Is it truly a fact that Sinemet will only work for a PWP for a certain number of years? If so, does that mean the length of time would be different for each patient, or does it have a certain number of years it will work for everyone. If this is true, once the Sinemet no longer works for a patient, what is the scenario for the quality of life (or movement abilities) to be expected? Or does that also vary? Thanks for your help.
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Dr. RodriguezJoined: 22 Jan 2007Posts: 92Location: Gainesville, Fl
Posted: Tue Apr 24, 2007 11:43 am Post subject:

The Sinemet will continue working, but the reponse may be associated with undesirable side effects or the response is not always consistent, causing disability. We try to delay using Sinemet as much as possible, but this does not mean you will live have a poor quality of life because of trying to avoid the medication. Your doctor will tell you when it is time to use it._________________Ramon L Rodriguez, MD
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What is the role of PD Caregiver?

If possible, try to agree on the role you will play with the person you care for.

The person with Parkinson’s disease will make the decisions, but you need to be there to offer physical and emotional support when it is needed. Be prepared for possible changes in Parkinson’s disease in the future—your role will probably change as the Parkinson’s disease progresses the role you will play with the person you care for.

The person with Parkinson’s disease will make the decisions, but you need to be there to offer physical and emotional support when it is needed. Be prepared for possible changes in Parkinson’s disease in the future—your role will probably change as the Parkinson’s disease progresses.

Value your partnerships

Take charge of Parkinson’s disease

Learn about the medications for Parkinson’s disease

Set realistic goals

Encourage exercise

Express your emotions

Adapt the home environment

Long distance caregiving

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What about the lifestyle for Parkinson’s disease?

Continuing to perform as many daily activities as possible and following a program of regular exercise can help people with Parkinson’s disease maintain mobility.

Exercise helps maintain range of motion in stiff muscles, improve circulation, and stimulate appetite.

An exercise program designed by a physical therapist has the best chance of meeting the specific needs of the person with Parkinson’s disease.

A physical therapist may also suggest strategies for balance
compensation and techniques to stimulate movement during slowdowns or freezes.

Physical and occupational therapy can help them maintain or regain muscle tone, maintain range of motion, and learn adaptive strategies. Mechanical aids, such as wheeled walkers, can help them maintain independence.

Good nutrition is important to maintenance of general health.

A person with Parkinson’s disease may lose some interest in food, especially if depressed, and may have nausea from the disease or from medications, especially those known as dopamine agonists (which are discussed further in the Drugs section).

Slow movements may make it difficult to eat quickly, and delayed gastric emptying may lead to a feeling of fullness without having eaten much.

Increasing fiber in the diet can improve constipation, soft foods can reduce the amount of needed chewing, and a prokinetic drug such as cisapride (Propulsid) can increase the movement of food through the digestive system.

A high-fiber diet can help counteract constipation, which may be worsened by the use of levodopa.

People with Parkinson’s disease may need to limit the amount of protein in their diets. The main drug used to treat Parkinson’s disease, L-dopa, is an amino acid, and is absorbed by the digestive system by the same transporters that pick up other amino acids broken down from proteins in the diet.

Limiting protein, under the direction of the physician or a nutritionist, can improve the absorption of L-dopa.

Certain foods, such as prune juice and other juices, and stool softeners, such as senna concentrate, can help keep bowel movements regular.

Difficulty swallowing can result in malnutrition, so doctors must ensure that the diet is nutritious.

Learning to sniff more deeply may improve the ability to smell, enhancing the appetite.

Simple changes around the home can make the home safer for people with Parkinson’s disease.

For example, removing throw rugs can prevent tripping, and installing railings in bathrooms, hallways, and other locations reduces the risk of falling.

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