Late Stages of Parkinson’s Disease

by Matt NilsenUnknown Category

Parkinson’s disease progresses into its late stages after an average of seven years. Advanced Parkinson’s disease is not pleasant to think about because of the limitations associated with it. However, a strategy for the later stages of Parkinson’s disease can help you have less “off” time and less discomfort. We hope this article helps you shift some of the discomfort time to satisfactory “on” time. We also want your caretakers to be able to handle their responsibilities, as well as get enough rest and relaxation.

When Am I in the Advanced Stage of Parkinson’s Disease?
Late stage or advanced Parkinson’s disease includes these noticeable signs:

• Complete reliance on others for food, bathing, dressing, and other basic activities.
• Difficulty speaking or communicating
• Severely compromised hand-eye coordination
• Severe memory loss
• Only being able to swallow soft food
• Falling daily
• Freezing frequently
• Walking only with assistance
• Experiencing unexplained pain

Strategies for late-stage Parkinson’s disease
You will rely on your neurologist more than ever during this stage of Parkinson’s disease. The expertise of a movement disorders specialist will be valuable for matching your needs with the treatments most likely to reduce your symptoms. Medications wearing off, deep depression and frustration, freezing, tremors, disorientation, dementia, and dystonia are all problems that can crop up in this stage. To address these issues your physician will likely adjust your medications. This is a time when you must be willing to test different medications at different doses and in different combinations.

COMT inhibitors are often effective in late-stage Parkinson’s disease, and the new dopamine agonist patch, Neupro, has also shown some encouraging results in recent clinical trials. Apokyn (injectable apomorphine) can be effective at arresting severe Parkinson’s symptoms, especially if you find your medications suddenly wearing off in a public place like a grocery store or restaurant.

Managing Life
This is a challenging time in life. You have to rely more on other people than you can on yourself. You may get discouraged that your family time, yard work, hobbies, work, travels, and other activities diminish. Your caretaker and your physician can help you come up with strategies that help you. We also encourage you to create a relationship with a social worker experienced with Parkinson’s disease.

A social worker can help you bridge some of the emotional gaps and address many of the practical issues of living. Your social worker will be able to suggest apparatuses for your home to help you and your caretaker. They can coach your caretaker in the challenges of being responsible for a person with Parkinson’s disease. You may be surprised to find that your social worker can address many of the financial challenges of living with Parkinson’s disease, too.

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Tags: Discussion, General, Symptoms by heroteo
3 Comments »

Glad to inform that my dizzness is going off completely by taking SERC 16, betahistine dihydrochloride 16 mg one dose three times daily.

I am still taking my Parkinson’s medication and Vitamin Supplements and Hormone Therapies.

There are nothing wrong for taking the Vit. Supplements and hormones therapies together with Parkinson’s medicine with the consultation with the doctors.

The dizznness was caused by Parkinson’s medicine.

Regards

TEOKIMHOE

Dr. FernandezJoined: 20 Jan 2007Posts: 90
Posted: Sun Jul 27, 2008 6:58 am Post subject:

Tim, I’m glad you are feeling better. But actually, we don’t know if there is nothing wrong taking vitamins and hormones in PD. The only way this is proven is through diligent clinical trials. And so far, all properly conducted clinical trials on vitamins (such as vit E, etc) have not shown to be efficacious in PD. There is promise however with creatine and with co-Q10. Yours,_________________Hubert H. Fernandez

Posted by Hero Teo at 11:17

Tags: Discussion, General, Medication, Symptoms by heroteo
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Posted: Wed Jul 16, 2008 1:58 pm Post subject: coffee and PD

Here is an article from a local paper relating to coffee and PD. http://healthzone.ca/health/article/460119 * 4 cups (32 ounces) of java a day can cut your diabetes risk by a third, possibly by improving insulin’s effects. * 3 cups (24 ounces) a day drops protects your brain, dropping your risk of Parkinson’s disease by 40 per cent and Alzheimer’s disease by 20 per cent. * 2 cups (16 ounces) a day keeps your liver healthy, as it filters out pollutants, makes protein, warehouses extra carbs and vitamins, and helps produce bile needed to digest fat. Comments? Jim
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Kathrynne Holden, MS, RDJoined: 22 Jan 2007Posts: 94Location: www.nutritionucanlivewith.com
Posted: Thu Jul 17, 2008 7:33 am Post subject:

Dear Jim, Generalizations are useful, but not law by any means. Coffee is fine, and indeed there are studies associating it with lowered risk for PD and other diseases; however, there are many thousands of lifelong coffee drinkers with PD. One could make as good a case for drinking tea, or for caffeine alone (see below). If you will search “Dietitian” archives, you will find many studies on turmeric/curcumin, as well as tea, neither of which will prevent PD, but both of which I believe are preferable to coffee. 1) Study Examines Effects of Tea Intake on Parkinson’s Disease Development Tan LC, Koh W-P, Yuan J-M, et al. Differential effects of black versus green tea on risk of Parkinson’s disease in the Singapore Chinese Health Study. Am J Epidemiol. March 1, 2008;167(5):553-560. Studies have shown that caffeine in coffee may improve motor deficits in patients with Parkinson’s disease by blocking adenosine A2 receptors. Small case-studies have shown that tea may reduce the risk of late-onset Parkinson’s disease. It is not known what ingredient in tea mediates this effect. The high prevalence of black and green tea consumption among the Chinese population makes this population ideal for evaluating the effect of tea on Parkinson’s disease. This report is based on data from the Singapore Chinese Health Study, which is a population based cohort established between April 1993 and December 1998. The cohort includes 63,257 ethnic Chinese aged 45-75 years who reside in government-built housing estates. The participants completed a food frequency questionnaire that listed 165 food items or groups of commonly consumed Chinese foods. The authors developed a food-nutrient database that provided the nutrient levels of 96 components per 100 grams of cooked food and beverages. The mean daily intake of caffeine and other nutrients for each subject was computed. Cigarette smoking was also assessed. Subjects reported new cases of Parkinson’s disease. Cigarette smoking was strongly associated with a reduced risk of developing Parkinson’s disease. Never smokers had a higher risk, former smokers had an intermediate risk, and current smokers had a low risk. Among ever smokers, beginning smoking at an earlier age and smoking a higher number of cigarettes per day were associated with a lower risk. Approximately 50% of the subjects drank tea at least once a week, with approximately one-third drinking only green tea, one-third drinking only black tea, and one-third drinking both types of tea. However, in this cohort coffee was the main source of caffeine exposure, with 70% of the population drinking coffee on a daily basis. Total caffeine intake exhibited a significant (P = 0.002), dose-dependent inverse association with Parkinson’s disease risk—the greater the caffeine intake, the lower the risk of Parkinson’s disease. The caffeine content in coffee was responsible for its effect. In contrast, black tea consumption was associated with a reduced risk, irrespective of the total caffeine intake or cigarette smoking. There was no association between green tea consumption and Parkinson’s disease risk. Subjects with high intake of both caffeine and black tea had the lowest risk of developing Parkinson’s disease. None of the other macro- and micronutrients in any of the consumed foods or beverages had a strong dietary influence on development of Parkinson’s disease. The authors conclude that ingredients in black tea, other than caffeine, reduce the risk of Parkinson’s disease. The authors speculate that the protective effect of black tea may be mediated by an estrogen-related pathway. Parkinson’s disease rates are lower among women (women have higher levels of circulating estrogens then men) and in the cohort circulating estrogens were highest among regular black tea drinkers and lowest in regular green tea drinkers. A limitation of the study was that it did not have any data on duration of coffee or tea intake. These results are consistent with findings in Western populations. —Heather S. Oliff, PhD 2) Green tea antioxidant may help prevent Alzheimer’s, Parkinson’s An antioxidant found in green tea appears to prevent the development of amyloid fibrils, a toxic protein associated with Alzheimer’s and Parkinson’s disease, a new study finds. Amyloid plaque is commonly seen in the brains of Alzheimer’s patients and appears to disrupt the function of cells. Strategies to prevent the development of amyloid plaque are one avenue being explored in the prevention and treatment of Alzheimer’s. Now, a German team says the tea antioxidant, called epigallocatechin gallate (EGCG), has potent anti-plaque ability. “”We can use small molecules like EGCG to convert certain misfolded structures of a protein into a new type of molecule, which is less toxic or not toxic for cells,”" said lead researcher Erich Wanker, from the Max Delbrueck Center for Molecular Medicine in Berlin. The findings are published in the May 30 online edition of Nature Structural & Molecular Biology. The accumulation of amyloid plaque in Alzheimer’s and other neurodegenerative diseases, such as Parkinson’s, are thought to be caused by the misfolding of certain proteins, which then become toxic to cells. The way proteins fold is key to their function, the researchers explained. In experiments in the laboratory, the German team found that EGCG seems to change potentially harmful proteins into proteins that are not detrimental to brain cells. “”We are able to convert a toxic structure into a less toxic structure,”" Wanker explained. Because EGCG binds to unfolded proteins — which are not associated with Alzheimer’s — the discovery could lead to medications that recognize the more troublesome proteins and convert them to harmless substances. “”This method could be more generally used to get rid of or remove the concentration of misfolded proteins in cells,”" Wanker said. “”This strategy should be tested with patients. If treated early on, it could prevent the formation of amyloid plaque,”" he speculated. Whether this type of treatment could reverse plaques that have already formed in the brain isn’t known, Wanker said. He noted that the study remains basic science, and he was cautious about recommending green tea as a way of preventing Alzheimer’s disease. “”I don’t want to do a lot of speculating which could point people in the direction that could be harmful,”" Wanker said. “”We have to go step-by-step.”" One expert believes the approach could yield real results, however. “”Yellow curry and green tea have suspected health benefits because of high content of antioxidants,”" said Greg M. Cole, a neuroscientist at the Greater Los Angeles VA Healthcare System, and associate director of the Alzheimer’s Disease Research Center at UCLA David Geffen School of Medicine. He was not involved in the study. “”This study provides evidence that a compound called EGCG, one of the major polyphenols in green tea, may be useful for diseases like Parkinson’s and Alzheimer’s, because it can block the formation of the filament-forming protein aggregates implicated in causing disease,”" Cole said. One novel aspect of the study is the authors’ demonstration that EGCG prevents toxic filament formation by redirecting the aggregating proteins to make non-toxic proteins, Cole said. “”This is surprising, because similar protein aggregate spheres called amyloid oligomers can be highly toxic to neurons and synapses,”" Cole said. “”It will be important for the authors to prove that the EGCG-directed proteins also lack toxicity to synapses which were not present in the systems used to test toxicity,”" he said. Assuming that the green tea compound has a stable effect and chronically blocks toxicity to real neurons and synapses, it could have genuine potential for Alzheimer’s patients, Cole said. “”The major caveat is the very poor absorption and delivery of EGCG seen in some studies,”" Cole said. The fact that EGCG isn’t available for patenting by pharmaceutical companies might be a problem, too, he said, since it could “”limit the investment needed for clinical trials of sufficient size to prove that it really works.”" In related research, a team of American scientists said that interrupting a key signaling pathway in immune system cells allowed those cells to enter the brain and attack and remove amyloid plaque. Reporting May 30 in Nature Medicine, a team led by research scientist Terrence Town, of Cedars-Sinai Medical Center, Los Angeles, conducted their study in genetically engineered mice. The group blocked a molecule that typically suppresses a portion of the immune response. Once the system was freed up, immune cells called macrophages made their way to the brains and devoured up to 90 percent of amyloid plaques, the team said. “”If these experimental animals are representative of the clinical syndrome of Alzheimer’s disease, we may have a therapeutic target that we did not have before,”" study co-author Dr. Jun Tan, of the University of South Florida, said in a statement. http://www.tehrantimes.com/index_View.asp?code=170128_________________Best regards, Kathrynne Holden, MS, RD — For a Parkinson Tip of the Day visit: http://www.nutritionucanlivewith.com/

Tags: Discussion, General, Medication, Nutrients by heroteo
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Anonymous
Posted: Tue Jul 15, 2008 9:32 am Post subject: Stress

Can you please explain the relationship of stress to PD? Does affect the speed with which the disease progresses? Should a person with PD be kept removed from stressful situations? If so, to what extent does one go to do this? Clover
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Dr. FernandezJoined: 20 Jan 2007Posts: 90
Posted: Sat Jul 19, 2008 10:53 am Post subject:

I am actually unaware of formal studies about stress and PD. But we do know that stress almost always temporarily worsens PD symptoms…tremors, stiffness and slowness almost always will be worse when someone is stressed. The symptoms usually resolve slowly as the stressful situation goes away. Bust as to whether this is deleterious in the long run, we do not know exactly to what extend. We also know, regardles of PD presence or not, that stress is not good for general well being. Stressed individuals have a higher likelihood of heart attacks, gastric ulcers and other conditions. Yours,_________________Hubert H. Fernandez

Tags: Discussion, General, Symptoms by heroteo
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http://forum.parkinson.org/forum/viewtopic.php?t=5146

Tags: Discussion, General, Symptoms by heroteo
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Posted: Wed Jul 16, 2008 3:41 am Post subject: Medical, Parkinsons, Smoking

Medical, Parkinsons, Smoking I stumbled upon this article from Xinhua stating that smokers and coffee drinkers are less likely to develop Parkinson’s disease. Quoting the article: Smoking cigarettes and drinking coffee may protect people from Parkinson’s disease, according to a new study in the April issue of Archives of Neurology out Tuesday. “What this study tells us is there is something about cigarette smoking and consuming caffeine that alters the biology underpinning of Parkinson’s disease,” said Professor William Scott,a leading researcher at the Institute of Human Genomics at the University of Miami Kindly comment TeoKimHoe
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Dr. FernandezJoined: 20 Jan 2007Posts: 90
Posted: Sat Jul 19, 2008 11:12 am Post subject:

Yes, it is true that there have been several epidemiological studies that showed lesser occurence of PD among patients who routinely consume caffeine and those who smoke. However, these are epidemiological studies that are subject to a lot of biases and not a direct causal relationship. Moreover, we have no reason to think that smoking and caffeine can improve the symptoms of those who already have PD. Supposedly, the mechanism of caffeine’s protection in developing PD is its role in the adenosine 2A receptors. I’m not sure baout smoking…but I am so biased towards the evils of smoking (the its clear risk factor for stroke, heart attacks and cancers) that I would avoid it at all cost, regardless of what epidemiological studies show regarding its relationship to PD. Yours_________________Hubert H. Fernandez

Tags: Exercise, General, Medication, Symptoms by heroteo
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Posted: Wed Jul 16, 2008 3:45 am Post subject: Two diagnose of parkinson’s disability rating scales

There are two diagnose of Parkinson’s disability rating scales are made :- Conventionally diagnose is assessed on the current symptoms how they respond to treatment :-whether symptoms are improved by adding levodopa. It involves over time or how you will respond to treatment. In clinical assessment, doctor may use one of two disability rating scales - 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 the parkinson’s are experiencing. TEOKIMHOE
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Dr. FernandezJoined: 20 Jan 2007Posts: 90
Posted: Sat Jul 19, 2008 11:16 am Post subject:

Thanks! I’m not a big fan of rating scales for clinical use. To me the most important is how my patients feel. We use them a lot however in clinical trials because this is one of the most objective way of determining whether a drug or intervention is working or not. None of the current scales we use is perfect. They do not capture all the signs and symptoms of PD. Yours,_________________Hubert H. Fernandez

Tags: Discussion, General, Medication, Symptoms by heroteo
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The medication (levodopa) for treating PD was discovered only in the 1960’s. Before the 1960’s, one study showed that untreated patients lived for an average of 10 years after diagnosis. As the physical disability in PD worsened with time, eventually patients became bed-ridden and succumbed to lung infection. This contributed to the shorter life span of Parkinson patients compared with those without PD

http://www.parkinson-study-group.org/What%20is%20Parkinson%20Disease.html

Tags: Discussion, Exercise, Medication, Symptoms by heroteo
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Tags: Discussion, Exercise, General, Symptoms by heroteo
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commonly asked questions  about  parkinson’s

a) When you have PD, you only have several months left to live

The medication (levodopa) for treating PD was discovered only in the 1960’s. Before the 1960’s, one study showed that untreated patients lived for an average of 10 years after diagnosis. As the physical disability in PD worsened with time, eventually patients became bed-ridden and succumbed to lung infection. This contributed to the shorter life span of Parkinson patients compared with those without PD.
Following the introduction of levodopa, the chances of survival of treated patients had significantly increased. With the use of levodopa, another study showed that patients’ quality of life had significantly improved and their life span was almost the same as the healthy population.
Nowadays, there are more and more Parkinson’s patients who succumb to other common illnesses of old age such as stroke and heart attack, rather than succumbing to PD itself.

 Source: PatientsLikeMe

well i dont believe you only got ten years to live . i have been living twith pd for 15 yearsall my doctors tell me that pd will not kill me

Jul 11, 2008 10:24AM

There are many online sources that discuss the “life span” question; here’s one that should cheer you up:
http://www.parkinson-study-group.org/What%20is%20Parkinson%20Disease.html
(snip):
Although it causes disability, PD does not appear to significantly shorten the lifespan of its sufferers. PD can be thought of as an illness that people live with, rather than die from.

b) PD is caused by stroke

As PD and stroke usually occur in the elderly people, naturally some people think PD is caused by stroke. Actually both this illnesses are totally unrelated to each other.
Stroke is characterized by sudden weakness of body (usually one side of the body) caused by blockage of blood vessels in the brain and thus, reduced amount of blood going to the brain.
In contrast, PD is due to a progressive loss of certain cells in the brain that lead to slowness of movement. The symptoms of PD begin very slowly over months to years, unlike in stroke. Very often, Parkinson’s patients themselves may not remember exactly when the subtle symptoms of PD had started. In fact, many Parkinson’s patients do not realized that they have PD until the early symptoms are noticed by family members of friends.

c) PD often leads to mental disability

Some people think that the changes in the brain of Parkinson’s patients will lead to mental disability such as dementia, a condition whereby patients have progressive memory loss and change in behaviour. In fact, PD is often mistaken for Alzheimer’s Disease (AD), a common cause of dementia. One of the main reasons why PD is often mistaken as AD is because both illnesses are usually seen in the elderly people.
The symptoms of AD are exactly opposite of that in PD. In the early stage of AD, patients have poor memory but good body movement. In contrast, in the early stage of PD, patients have good memory but poor (slow) body movement.
However, in the late stage of PD, some Parkinson’s patients do subsequently develop dementia (PD Dementia or PDD). Fortunately, PDD occurs in only about 15% of Parkinson’s patients.

d) Parkinson’s patients will be bed-ridden very soon after diagnosis

As mentioned earlier, the physical disability of Parkinson’s patients does worsen as time goes by. Until today, there is still no cure for this illness. Thus, many Parkinson’s patients did become bed-ridden many years ago when there was no effective treatment for this illness.
However, with the advent of more effective treatment (drugs and brain surgery) for PD, the scenario has changed for the better. The available treatment has made it possible for many Parkinson’s patients to much better symptom control and physical mobility for the rest of their lives. In fact, it is very unlikely for a Parkinson’s patient to be wheelchair-ridden. Nowadays, many Parkinson’s patients continue to be reasonably active in their daily life and career for up to 10-15 years after having the illness

e) PD is caused by unhealthy food

The role of unhealthy diet (high cholesterol or fat intake) in stroke is well established. In contrast, the role of dietary factors in the causation of PD remains speculative.
Some studies have shown that PD has been associated with inadequate intake of vitamin E. In a local study on Parkinson’s Disease in University Hospital, Kuala Lumpur, it was revealed that there were disproportionately higher number of Malaysian Chinese patients than other races. It was postulated that it could be due to the dietary habit of Malaysian Chinese, who preferred raw or half-cooked vegetables that may contain pesticides (chemicals that may cause changes in the brain leading to PD).
Interestingly, people who regularly drink coffee and black tea have been reported to have lower chance of developing PD.
In conclusion, it has to be emphasized that all these are merely observations and we cannot confirm a direct role of diet in the causation of PD.

f) The children of Parkinson’s patients have a strong possibility of inheriting the illness

The role of genetics (inheritance) in the causation of PD has been well established. In other countries, it has been reported that 6-24% of Parkinson’s patients have family members who affected by the same illness. However, in the local study at University Hospital, Kuala Lumpur, only 2% of Parkinson patients have family history of similar disorder. Thus, the possibility of children of Parkinson’s patients in Malaysia inheriting the same illness is very small and should not be a major cause of concern.

g) PD can be transmitted to family members by an infective process

This is a cause of concern among the immediate family members of Parkinson’s patients. Some people think that PD is a form of virus infection (such as flu) that can be transmitted to other family members through close contact. This belief is unfounded as PD is not an infective process.

Conclusion

The misconceptions regarding PD, which stem from ignorance, are very common in Malaysia. Lack of information on PD is a major problem in this country. It is hoped that the Lloyd Tan website will help the Malaysian Parkinson’s community have an adequate understanding of the nature of PD, in order to avoid unnecessary anxiety and fear.

Source Selfless Warrior by Dr.NK Chew

Tags: Discussion, General, Medication, Symptoms by heroteo
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