Category Archives: Lifestyle

What yu can do to help with symptoms and living best

New Book! DBS A patient guide to deep brain stimulation


A book for people interested in or already  living with DBS

A book for people interested in or already living with DBS

DBS A patient guide to deep brain stimulation

by Sierra Farris PAC and Monique Giroux, MD

Visit this link to order your copy. www.dbsguide.com

This book distills a high tech brain surgery into understandable terms for every reader. This guide offers a wealth of information whether new to DBS or already living with DBS. The authors bring 14 years’ experience working as a DBS team in treating over 1000 DBS patients. Their easy to read format is packed with practical tips in a patient-centered approach. The authors hope to promote patient empowerment by offering insights that are rarely shared outside the clinic appointment. Being well informed is the first step in making the right decision for you.

Deep brain stimulation offers years of symptom relief for people with Parkinson’s disease, tremor and dystonia. DBS may even modify the disease course and improve quality of life when other therapies are not enough. As medical consumers, patients must become their own advocates to ensure that they are well informed, especially before agreeing to brain surgery. Filled with case studies, personal stories, practical tips and unique graphics, this book offers in-depth easy to understand explanations for one of the most high tech procedures that can turn back the clock on neurological disease.

DBS programming expert Sierra Farris, PAC explains that “the day you have DBS surgery is the first day of the rest of your life. Make sure you know what you are getting into and even more important, feel confident with your chosen team.” These words echo the sentiments of both authors and their patient centered approach to care.

Chapters include detailed explanations of DBS therapy, expectations for improvement, the surgical evaluation process, and surgical procedure. An emphasis on stimulation programming principles and troubleshooting steps for poor outcomes remains an important aspect to a life-time of therapy. Long-term care tips, DBS specific lifestyle tips and caregiver impact is discussed. Finally, myths and controversies make this book unique and an important guide for you- the patient.

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Acting out your dreams- a sleep problem in Parkinson’s disease


sleepREM sleep disorder is a condition described as active, vivid and sometimes violent dreaming. Bed-partners  describe restless dreaming that can include talking, screaming, punching and even getting out of bed to physically’ act out a dream.’ This condition occurs during REM (rapid eye movement) stage of sleep when dreaming happens.  During REM sleep our bodies lose muscle tone preventing movement while dreaming. During REM sleep disorder, body muscle tone or ability to move is maintained. This, coupled with active dreaming, can lead to sleepless nights and harm to the person or their bed partner.

REMSD can be present as an isolated condition or a condition associated with disease such as Parkinson’s or Lewy body disease. In fact, REMSD can predate movement problems of Parkinson’s disease and is being studied as a risk factor for developing the disease.

The active and vivid dreaming of REMSD is different from hallucinations although an individual can have both problems together. This problem should be evaluated to prevent physical harm and to improve sleep. The following tips can be helpful:

  • First, inform your healthcare provider about this problem
  • Review your use of bedtime medicines such as Benadryl and antidepressants that can influence REM sleep.
  • Review timing and type of Parkinson’s medicines as medicines that increase confusion and hallucinations may also increase your risk of this problem.
  • Avoid alcohol before bedtime.
  • Make your time before bed a relaxing time. Avoid watching violent movies, stressful tasks or the evening news. Relax and unwind instead with gentle stretching and music.
  • Remove furniture and clutter from the room that would be a trip hazard in the event you ‘act out your dreams.’
  • Use you sleep mask or oxygen as prescribed if you have sleep apnea.
  • When needed medical treatment can help. Melatonin is sometimes helpful as is a prescription medicine called clonazepam. Clonazepam is similar to Valium so does have additional risks of sedation, confused imbalance.
  • Talk to your doctor is you are experiencing thinking or cognitive problems as these problems can be associated with REMSD.

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Are there recommendations for the best type of mattress for Parkinson’s?


New comments on best mattress and sleep for Parkinson’s

PDCommunity!

sleepPreference for bedding and type of mattress differs from one person to the next. An old mattress can be uncomfortable, lose its support and contribute to back pain or sleeping problems. However, certain Parkinson’s related problems will influence what type is best for you.  The following considerations can help you chose your mattress/bedding

  • Avoid high bed frames/mattress sets as these may be harder to get in and out of bed
  • A firmer mattress will make it easier to turn in bed. ‘Memory foam’ that molds to your body can make it harder to roll over and turn in bed.
  • An adjustable bed that allows the head of bed to be elevated can help with getting out of bed, finding a comfortable position
  • An adjustable bed that allows the foot of bed to be elevated can reduce leg swelling by elevating your feet
  • Try silk or sateen sheets or bed-clothes to help…

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How can service dogs help Parkinson’s?


Service dog for independenceService dogs are specialty trained to help and protect people with vision, hearing, physical and emotional challenges. Some of the earliest and well-known use of service dogs is the use of guide dogs for blind or visually challenged persons. The majority of people with PD use a Mobility Assistance Dog.

Sometimes a special harness is worn by a Mobility Assistance Dog made for pulling objects, such as wheelchairs.

Service dogs can help a person with Parkinson’s disease in many ways. Here are just a few of the ways:

  • Help with physical tasks around the house such as turning on light switches, opening and closing doors, picking up objects.
  • Assist with walking by helping with balance, act as a support or help a person get up.
  • Hold a person up if they are dizzy.
  • Overcome freezing of gait. This can be done by clearing the way in crowded areas, by using gentle pressure on a person’s leg or leading a person away from a hectic and stressful area that can exacerbate freezing.
  • Exert a calming effect at times of stress and anxiety

Remember these are service dogs and not pets nor a guard dog. They are wonderful and amazing animals that can help you live better. Contact the following sources for more information:

Assistance Dogs International http://www.assistancedogsinternational.org/. This site offers information on service dogs with FAQ.

Paws with a cause. https://www.pawswithacause.org/what-we-do/service-dogs. This site offers general information.

Nationwide Assistance Dog Group and Training Listing. http://landofpuregold.com/service-groups.htm. This site lists training and service dog programs by state.

Please tell us how your service dog helps you or share your experience in obtaining one by replying to this post.

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Filed under Community Programs & Updates, Comprehensive Care, Creativity, Encouragement, Inspiration and Motivation

Is your environment a high risk PD zone?


Dust-CropperIs there a toxin or something in the environment that causes Parkinson’s?

Epidemiological studies analyze large populations to understand trends, and identify certain risk factors  for develop of Parkinson’s disease.  It is important to note that these studies do not determine whether an increase risk is true for an individual person but simply the population at large.  Although epidemiologic studies identify several potential risk factors, they are clearly not the sole cause.  A combination of events or risks must take place to cause the disease such as exposure to a toxin and inheriting the genetic risk (either risk alone would not cause the disease

Are there certain areas where Parkinson’s incidence is increased?

Some studies show an increase risk of developing Parkinson’s in more rural farming communities and in areas with well water as a primary source of drinking water.  This may be related to exposure to pesticides in farming community.

Do certain occupations increase the risk?

Initial reports suggested welders had an increased risk of getting PD yet more recent reports dispute that claim.  Trichloroethylene (TCA) a chemical used in dry cleaning also was associated with a greater risk of getting PD.  Soldiers exposed to Agent Orange during the Vietnam War are now eligible for disability compensation from the Veterans Administration.

What about pesticides?

Probably the strongest link between Parkinson’s risk and the environment is the exposure to high level pesticides.  Paraquot, rotenone and permethrin (used to kill mosquitos) are under active study. It is important to realize that most people with everyday exposure and even higher level industrial exposure through their occupation do not develop Parkinson’s.  This reinforces the idea that these toxins increase ones risk and other factors such as genetics work together to play a causative role in Parkinson’s

Do Industrial chemicals and metals increase the risk?

Solvents such as TCA and polychlorinated biphenyls (PCBs) may be associated with an increased risk of Parkinson’s. Manganese, lead and copper are examples of metals that are being studied.

What about the food we eat? Noted only in one small study, men who drink milk (but not cheese or other dairy) have a higher risk of Parkinson’s.  The problem does not appear to be due to calcium, vitamin or fat present in milk. Whether this is related to chemicals and hormones present in milk or the effect of milk on our body’s physiology is not known.  Drinking milk does not change your disease or rate of progression once you have Parkinson’s.

What should I do to reduce my risk?

  • Avoid exposure to pesticides. if you must use them be sure to wear gloves and a mask.
  • Wash all fruit and vegetables
  • Learn about the ‘Dirty dozen’ and ‘Clean Fifteen’. This is a list of fruits and vegetables published each year found to have the highest degree of contamination with pesticides and related chemicals and the safest, respectively
  • Reduce the amount of meat you eat in your diet
  • Eat a diet high in antioxidants (colorful fruits and vegetables.)

 

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Filed under Lifestyle, Parkinson's Research

Is natural dopamine better than Sinemet?


Mucuna PrurienMucuna pruriens or cowhage seeds are a natural source of Levodopa and its use to treat Parkinson’s symptoms can be traced over 4500 years ago when it was first used by Indian physicians practicing traditional Ayurvedic medicine. The benefit of cowhage seeds is due to the fact that these seeds contain 3-4% levodopa, the standard medical treatment for Parkinson’s. Interest in Mucuna pruriens has grown especially amongst individuals searching for a natural treatment.

Because cowhage seeds contain the dopamine precursor levodopa, clinical studies have been preformed to study its use in Parkinson’s disease. One study showed that Mucuna helped Parkinson’s patients with on-off fluctuations and dyskinesia[1]. Motor symptoms improvement was faster with Mucuna 30 grams (Phytrix, manufacturer) than carbidopa/levodopa 50/200. However only eight patient’s were studied and more research needs to be done.

At present, there is no recommended dose as further clinical trials are needed.

The following general principles must be understood when investigating the use of Mucuna pruriens:

1.       The proposed active compound, levodopa, found in these seeds is chemically the same as that in standard medicine. Mucuna, therefore, can have the same side effects that are seen with levodopa.

2.      Mucuna pruriens seeds, like other natural substances, are made up of more than just levodopa. Proposed benefits could be due to other biologically active compounds not yet determined that are present in the seed. Although these compounds may add benefit they can also have additional side effects and drug interactions.

3.      Supplements are not regulated by the FDA so any single brand may not have the purity or strength claimed on the manufacturing label. Supplements are big business and you may not always be buying what you think you are buying. Toxic side effects from impurities in supplements have been observed. Look for supplements with the label ‘USP verified’ to insure potency, purity and bioavailability is appropriate.

4.      Natural supplements can interact with you medicines. Talk to your healthcare provider before beginning a supplement.

5.     The amount of levodopa present in beans can vary dramatically from on bean to the next based on age, where it is grown, etc; so it may be difficult to standardized a dosage.

Other names for Mucuna pruriens are: velvet bean and cowhage seed.

As always, it is important that you talk with your healthcare provider before changing your medical therapy.

 


[1] Journal Neurology Neurosurgery Psychiatry 2004. 75: 1672-1677.

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Filed under Complementary Therapy, Nutrition, Vitamins and Supplements

Does glutathione help Parkinson’s disease


Glutathione (GTH) is a molecule and potent antioxidant found inglutathione our cells. Glutathione is produced by our bodies and levels decrease with aging, many diseases and Parkinson’s disease.  The role of glutathione is to eliminate these free radicals; in essence, putting out a fire. It is unclear whether the low glutathione content in the PD substantia nigra is due to impaired production, or because the burden of free-radicals is excessive.

IV glutathione is a popular complementary and alternative medicine (CAM) therapy for Parkinson’s yet the benefits are not clear, it is costly and side effects do exist.

In 2009, researchers in Florida conducted a study to determine whether IVGTH showed benefit compared to placebo. Over the four weeks of the study, individuals receiving IV glutathione had a mild improvement in symptoms, while those receiving the placebo did not. This benefit was lost when glutathione was stopped. (Hauser RA, et al. 2009). It is important to note that the differences between these two groups were not significant. While the study is small and only provides preliminary data, it is promising non-the-less.

Mechanism of Action

Continued interest in glutathione  explores this molecules anti-oxidant properties.   The loss of glutathione in the substantia nigra precedes PD symptoms by more than a decade, and occurs prior to the formation of Lewy bodies, considered a PD precursor. Just because low glutathione levels correlate with PD severity, doesn’t mean that the loss of glutathione causes the disease. This is highlighted by the fact that glutathione is decreased in many diseases including cancer, vascular disease and other diseases of aging. We have no idea whether glutathione has the potential to retard disease progression, as the study has not yet been done.

Future Research

More information is needed to determine if glutathione is helpful in Parkinson’s disease. Although studies to date showed no statistically significant difference between placebo treatments and  glutathione many questions are still unanswered such as the optimal dose, timing of treatment in relation to disease severity, and duration of treatment. Studies are on going and investigating other ways of delivery such as intra-nasal spray.

Caution about pills

Since GTH is made up of amino acid precursors (similar to proteins),it is broken down in the gut prior to absorption and therefore little is available for use. It is for this reason that treatments focus on intravenous or IV (administered directly into the bloodstream through the vein.

Safety and ADverse Events

  • Expense of treatment
  • Bruising and Infection at IV site
  • Rare cause of liver damage

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Filed under Complementary Therapy, Nutrition, Vitamins and Supplements, Vitamins and Supplements

What do I need to know about vitamins?


Medication Assistance is availableThe vitamin and supplement industry is a multibillion dollar business. If you search the internet, browse your pharmacy aisle or read a magazine you will discover many claims about a supplement treating a multitude of symptoms, cure disease, or increase vitality. Watch out for these claims, especially the wonder pill that treats so many problems that it sounds too good to be true- it most likely is. Is there true benefit or is it marketing hype? Ask you healthcare provider or nutritionist about the evidence if any that exist behind these claims. Here are some common claims or statements you may have heard.

So why do we take vitamins? When asked, most people say they are taking vitamins to stay healthy, ward off disease and colds and to make up for a healthy diet.

There is no data to support the claim that vitamin supplements will keep you healthy and in the absence of deficiency will not treat disease. Expecting your vitamin pill to take the place of a well balanced vitamin and nutrient rich diet is like trying to make a full course dinner by tossing together a few key ingredients. If health is your aim, remember diet, exercise, stress reduction, emotional and social health are the key ingredients. Nonetheless, there may be a place for vitamins such as B vitamins in people with stroke, vitamin D  in MS and Parkinson’s and vitamin B12 and folate for people with cognitive disorders and depression. Ask your doctor if vitamins a right for you and be sure to read about the good and the bad…

It is just a vitamin so it can’t hurt me (or substitute it is just an herb or natural supplement). Yes it can! The following examples illustrate this point:

  • Vitamin A, D, E and K are fat soluble vitamins. These vitamins are stored in our body’s fat cells and high doses can accumulate to toxic levels.
  • Vitamin E is a powerful antioxidant, helping the body reduce damage caused by free radicals. Although the evidence is inconsistent, one met analysis (review of the effect based on examining outcomes of many studies) found higher rate of mortality from all causes in people on high dose vitamin E. High dose vitamin E has multiple toxic consequences. Miller 2005. Ann Intern Med. Jan 4 2005;142(1):37-46
  • Over ingestion of vitamin D may be associated with calcification of blood vessels in elderly and African Americans.
  • High dose preformed vitamin A, known as retinol (found in animal foods) can cause headache, seizures, muscle aches, osteoporosis, skin and stomach problems. Provitamin A such as beta carotene found in fruits and vegetables such as carrots is safer than preformed vitamin A so read your vitamin label carefully.
  • Excessive doses of vitamin C are used by some during cold and flu season. Very high doses of vitamin C can cause kidney stones from uric acid, diarrhea and increase iron absorption (this is a problem if iron is stored in excess).
  • Excessive iron can be deposited in our body’s tissues leading to problems liver, skin, joint and intestinal symptoms. Iron is used to treat certain types of anemia. Many postmenopausal women and men do not need iron so talk to your doctor about whether you need iron.

So should I take a multivitamin?

Few Americans are vitamin deficient. In part because the processed foods we buy off the shelf are fortified with vitamins and minerals. A multivitamin will never substitute for the health benefits of a balanced diet that includes 8-10 servings of fruits and vegetables, whole grains, vegetable protein, omega 3 fats such as in certain fish, and high fiber (20-30G). Turn to food and vitamins to be sure you get a variety of vitamins and minerals in your diet.

However, some people are at higher risk for deficiencies:

  • Vegetarians- may be deficient in B12, iron, calcium depending on diet
  • Elderly
  • Intestinal Malabsorption problems  such asCeliac,Sprue.
  • Long-term users of stomach acid depleters ,
  • Alcoholics
  • Pregnancy

There is no simple answer as to whether a vitamin is needed for you. Talk with your doctor before choosing a vitamin.   Specific questions to ask include:

  • Do I need iron?
  • Should I take a calcium supplement?
  • What about vitamin D or B vitamins?
  • What dose of vitamin E and A is safe for me?
  • How much B vitamins, calcium and D should I take?

Steps you can take if you do take a vitamin

  • Read the label on your vitamin bottle.
  • Avoid mega-doses unless recommended by your doctor. This is especially true for vitamin E and A.
  • Take iron only, ie. restless leg syndrome, premenopausal women on doctor’s advice
  • Pay attention to how much calcium you are getting in your diet and vitamin. Does it add up to the recommended dose given you by your doctor (1000-1200mg is the average daily requirement for older adult needs).
  • Look for 100% RDA of vitamin C, B12, folate,B2,  B6, thiamin, niacin, A (preferable in provitamin beta-carotene form). Gender specific or other specialty vitamins may differ slightly but the true value of these costly formulas is unknown.

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Filed under Nutrition, Vitamins and Supplements, Self-Care

When do I need to see a physical therapist?


Physical Therapist Working with PatientChances are you will benefit from a physical therapy (PT) evaluation and treatment if you have movement symptoms associated with Parkinson’s disease or other brain condition. However PT does more than simply treat movement symptoms. The objectives of PT vary with individual needs but do include these general goals:

  • Evaluate movement problems and recommend therapy early in disease before problems and bad habits occur
  • Reduce symptoms of disease associated with imbalance, rigidity, slowness, involuntary movements
  • Reduce or delay symptoms of disease progression through targeted exercise such as balance and falls
  • Optimize independence
  • Optimize your home exercise program with a focus on general health, stamina, disease symptoms and long-term compliance
  • Evaluate and recommend specific braces, orthotics, and ambulatory assist devices such as canes and walkers
  • Improve safety, enhance confidence and reduce fear of activity such as fear of falling
  • Neuro re-education designed to combat the abnormal movement associated with physiologic brain changes of disease, programs such as ‘Big and Loud’
  • Promote neuroplasticity or enhanced brain activity through movement
  • Promote healthy lifestyle changes to improve activity levels, quality of life and well-being both now and long-term

Don’t wait.

What is most important is that you advocate for yourself and take a proactive stance by seeking out a therapist even before you have problems. Most people wait until symptoms are significant or cause serious problems such as falls, pain or joint disease.
Advocate for your care.
Ask your doctor of healthcare provider if you can have a referral to a rehabilitation specialist.
Use this checklist to see how rehabilitation and other specialists can be of help to you and as a guide for discussion with your doctor or therapist.
Download and complete your Comprehensive-Care-Worksheet.

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Filed under Exercise, Self-Care, Symptoms, Diagnosis and Progression

Top Ten Tips for Parkinson’s Disease- Tell us yours


Tremor is one the cardinal symptoms of ParkinsonsApril is Parkinson’s Awareness Month.

Chances are you know the value of information and support if you are living with Parkinson’s disease. This blog brings so many people together with a single goal – living your best with Parkinson’s disease. Each person has their own idea of what helps, what gives the most sense of support, wellbeing, happiness and empowerment. Help us bring awareness and support to the community by telling us what has helped you the most.

Add your tips or helpful experience to the list below by replying to this post. This information will help us create a top ten tips for Parkinson’s

What are you grateful for?Eat a variety of colorful fruits and vegetables to your diet Support and counseling important for depressionPhysical Therapist Working with PatientIntimacy comes in many formsYoga can improve balance

  • Get the information you need to understand your condition and the medicines used to treat it.
  • See a physical therapist to tailor your exercise program to your needs
  • Add antioxidants to your diet
  • Focus on the positive and what you can do not just what you can’t
  • Dont go it along. Reach out to others for help and give it in turn when you can
  • Reduce the effects of stress.
  • Search for balance in life- nourishing the mind,body and soul

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Filed under Encouragement, Inspiration and Motivation, Exercise, Lifestyle, Our Community, Self-Care