Life

Singing Helps Early-stage Parkinson’s Patients Retain Speech, Respiratory Control

September 1, 2017 Exercise, Life

Singing may help people with Parkinson’s disease — especially in its earlier stages — because it strengthens muscles involved in swallowing and respiratory control, suggests two studies from researchers at Iowa State University.

One study, “Therapeutic singing as an early intervention for swallowing in persons with Parkinson’s disease,” was published in the journal Complementary Therapies in Medicine. The other, “Effects of singing on voice, respiratory control and quality of life in persons with Parkinson’s disease,” appeared in Disability and Rehabilitation.

Parkinson’s research and current treatments largely focus on symptoms relating to motor skills, and less on those like voice impairment, even though weakness in vocal muscles affects respiration, swallowing abilities and quality of life. Voice impairments in Parkinson’s — present in 60 to 80 percent of patients, are characterized by reduced vocal intensity and pitch, and breathy voice.

Previous research has suggested that singing can ease voice impairment and improve respiratory control in people with other diseases or conditions, leading researchers to examine if it could also aid those with Parkinson’s, especially in the disease’s early stages.

Results showed that both groups had significant improvement in respiratory pressure, including both breathing in and breathing out. Phonation time, a measure of how long a person can sustain a vowel sound, also significantly improved. Patients also reported significant improvement in measures of both voice-related and whole health-related quality of life. Lead author Elizabeth Stegemöller conducted two separate pilot studies to determine whether a group of 25 Parkinson’s patients would benefit from light therapy, singing for 60 minutes once a week, or more intensive therapy that involved singing for 60 minutes twice a week. Board-certified music therapies conducted the sessions, which included vocal and articulation exercises as well as group singing. After eight weeks, researchers measured vocal, respiratory and quality-of-life parameters.

“We’re not trying to make people better singers,” Stegemöller said in a press release. “We’re trying to work the muscles involved with swallowing and respiratory control, to make them work better and therefore protect against some of the complications of swallowing.”

Stegemöller, an assistant professor of kinesiology at Iowa State in Ames, runs singing classes there for Parkinson’s patients. She also collaborates with Iowa State Extension and Outreach to pilot an eight-week training session in several counties across northern Iowa, with the goal of creating a DVD to train extension specialists to conduct such classes on their own.

“We do a lot of vocal exercises in classes that focus on those [vocal and respiratory] muscles,” Stegemöller said. “We also talk about proper breath support, posture and how we use the muscles involved with the vocal cords, which requires them to intricately coordinate good, strong muscle activity.”

The goal now is to expand the initiative, she said, adding that “if the DVD is an effective training tool, we’d like to have as many classes as possible across the state.”

Article from Parkinson’s News Today.

First Drug Approved for Dyskinesia in Parkinson’s Disease

September 1, 2017 Life, Research

Adamas Pharmaceuticals recently announced U.S. Food and Drug Administration (FDA) approval of an extended-release formulation of amantadine (GOCOVRI) to treat dyskinesia in Parkinson’s disease. This is the first drug indicated specifically for dyskinesia — uncontrolled, involuntary movements that can develop with long-term levodopa use.

Extended-release amantadine is intended to be taken once daily at bedtime. In this way it can control dyskinesia during the day, when it typically is most prevalent. The new therapy’s approval is based on data from three placebo-controlled trials that demonstrated safety and efficacy. In addition to easing dyskinesia, the drug also may lessen total daily “off” time, when Parkinson’s symptoms return because medication is not working optimally.

The Michael J. Fox Foundation (MJFF) helped move this drug to market by supporting the creation and authentication of the Unified Dyskinesia Rating Scale, a tool that was used to measure the drug’s impact in trials.

“Dyskinesia can significantly compromise quality of life for people with Parkinson’s,” says Todd Sherer, MJFF CEO. “We are pleased that patients have another option to manage this aspect of the disease and glad the Unified Dyskinesia Rating Scale — a tool our support helped develop and validate — could show clinical efficacy of GOCOVRI for the treatment of dyskinesia.”

Extended-release amantadine is a reformulation of a currently available generic immediate-release version, which is approved to treat Parkinson’s symptoms.

Article from Michael J. Fox Foundation for Parkinson’s Research.

Next Stop for PD Research: Outer Space

September 1, 2017 Life, Research

In an effort to find new treatments for Parkinson’s disease, researchers are sending their experiments to space.

On Monday Aug. 14, researchers launched a key Parkinson’s disease protein, called LRRK2, to the International Space Station (ISS). The microgravity conditions in space should offer a better test environment for their experiments with this protein, the researchers said.

The materials for their experiments will travel aboard the SpaceX Dragon capsule as part of a mission to send supplies and science experiments to the ISS.

The work is a collaboration between The Michael J. Fox Foundation for Parkinson’s Research and the Center for the Advancement of Science in Space (CASIS).

LRRK2 is a type of protein that modifies other proteins. Mutations in the gene that codes for LRRK2 are thought to cause Parkinson’s disease in some people. Researchers have hypothesized that developing drugs to inhibit LRRK2, or block its activity, could help prevent Parkinson’s or slow its progression.

But before scientists can develop a drug to inhibit LRRK2, they need to know the precise structure of this protein. One way to get a detailed view of its structure is by growing crystals of LRRK2 in lab dishes. However, on Earth, gravity can interfere with the growth of these crystals, and keep them small.

“The quality of our crystals is just not good enough [on Earth],” Sebastian Mathea, a researcher at the University of Oxford who is involved in the LRRK2 project, said during a news conference about the project Tuesday (Aug. 8).

This is where the ISS research comes in: Researchers hope that the microgravity conditions in space will allow the crystals to grow bigger with fewer defects. The scientists can then get a sharper view of the crystal structure.

Scientists will grow the LRRK2 crystals for about a month in space. Then, the crystals will be sent back to Earth, where they will be analyzed with high-energy X-rays, Mathea said.

Parkinson’s disease is a progressive neurological disorder that affects people’s movement abilities, and can result in symptoms such as tremors, slowed movements and muscle stiffness. There are currently no treatments to stop or reverse the progression of the disease, according to The Michael J. Fox Foundation.

Article from Live Science.

7 Helpful Hand Exercises for Parkinson’s

September 1, 2017 Exercise, Life

Follow along as a physical therapist walks through 7 “handy” Parkinson’s exercises to help you improve finger and hand dexterity. For more helpful Parkinson’s resources and exercise videos, visit www.invigoratePT.com.

At-Home Exercises

August 1, 2017 Exercise, Life

At our Symposium in June, two of the breakout sessions focused on exercise. Ceilia Maccani, one of our presenters, put together some general exercises you can do at home to address some of the problems found in Parkinson’s.

If you have more specific problems, please consult your physical therapist or physician.

Legal Tools for Caregivers

August 1, 2017 Caregivers, Education, Life

If you are caring for a loved one, there are certain legal strategies and tools that you need to utilize to ensure that your loved one gets the best quality of care possible and has the highest quality of life. The tools and strategies come in two forms, the basics that everybody needs and then more advanced planning strategies.

There are certain basics that every caregiver needs to have in place for their loved one. Those basics include things like financial powers of attorney, medical powers of attorney, and personal care plans it is important to work with a certified elder law attorney to ensure that you have these documents in place, because these are the key tools that will allow you to provide and care for your loved one.

The first of the basic tools is a financial power of attorney. The financial power of attorney is a document that allows you to make financial decisions for your loved ones. For example, the financial power of attorney would allow you to pay the bills, work with the bank, move money around to protect against long-term care costs. The financial power of attorney is probably the most important document when it comes to caring for a loved one. It is not a document to be treated lightly or to skip over.

Not all financial powers of attorney are created equal. Many financial powers of attorney put limitations on what you can and cannot do as a POA. In fact, many of the financial powers of attorney actually put handcuffs on the agent, in fact not allowing them to do the things they may need to do when caring for a loved one. For example, many financial powers of attorney do not allow you to create an asset protection trust for a loved one. That is why it is important to work with a certified elder law attorney (CELA) when crafting a financial power of attorney.

The next key tool when caring for a loved one is a medical power of attorney. These may go by different names including patient advocate designation, advanced directive, or living will. What this document does is gives the ability to the person you’ve named to be able to make medical decisions for you, including the ability to remove you from life support. The defaulted in many states is that if you are in a vegetative state you are to remain that way unless there is some clear, written, evidence to the contrary. That is why having a medical power of attorney that includes the ability to be removed from life support is important. Typically, this is the document that doctors and hospitals will ask for.

Now one of the basic documents the many people do not have is a personal care plan. A personal care plan is a document that gives instructions to the financial and medical power of attorney on how best to care for you. The provides guidelines on what type of care do you want to receive, for example do on receive care at home or would you prefer to be in an assisted living. Another example would be what type of food do enjoy or what type of television programming would you want to watch. Now this document is not set things in stone, but it does provide a good guideline for your caregivers, whether those caregivers or family or professional caregivers.

Now that the basic documents are in place, now we need to talk about some advanced planning tools such as personal care contracts and asset protection trusts. But, before those are discussed, it is important to understand some governmental programs that are available to help pay for long-term care costs. There are two very important governmental programs. The first is Medicaid, which in many states can help pay for nursing home costs. However, Medicaid has a $2000 asset limit for single individual as well as a five-year look back period. The second governmental program is the VA benefit which can help pay for home care as well as assisted living. The VA benefit also has an asset test where, typically, if you have more than $30-$60,000 of countable assets you are not going to qualify. So, with these two governmental programs the next tools that will be discussed help us qualify for those governmental programs. They are not always necessary, but they can be helpful in qualification.

An asset protection trust is a great way to protect assets from the devastating cost of long-term care so the governmental benefits such as the VA benefit or Medicaid can help pay the cost of care and then the assets in the trust can be used to pay for additional services. Asset protection trusts will differ depending on the governmental program that they are set up to qualify for. For example, an asset protection trust set up to qualify for the VA benefit will have different rules and regulations around it then and asset protection trust set up specifically to qualify for Medicaid. That said typically a VA asset protection trust will also start the five-year look back. For Medicaid. So, a VA trust also will help you get qualified for Medicaid.

in addition to having an asset protection trust, it also may be important to have a personal care contract if you are providing care for a loved one because by you providing care to your loved one may be entitled to the VA benefit if they were veteran or surviving spouse. One of the qualifications for the VA benefit is long-term care costs. By setting up a personal care contract and having the veteran or surviving spouse pay a family member under the personal care contract, that could constitute long-term care costs for purposes of the VA benefit. In other words, if daughter was providing care for mom was a surviving spouse, mom could pay daughter under a personal care contract and now qualified for the VA benefit, which could pay mom an additional $1153 per month. Another important piece of the personal care contract is it if it’s set up properly the money that mom moves to daughter would not be a divestment under Medicaid’s five-year look back period.

Caring for a loved one can be confusing and frightening. It is important to use the right legal tools to make the process as easy as possible. Those legal tools include things like personal care plans, powers of attorney, asset protection trusts, and personal care contracts. It is important to work with a certified elder law attorney (CELA) to set up these documents and to make sure that you receive as much assistance from the governmental programs such as Medicaid and the VA benefit as possible.

Article from Caregiver.com

People with Parkinson’s should be monitored for melanoma, study finds

August 1, 2017 Awareness, Education, Life, Research

People with the movement disorder Parkinson’s disease have a much higher risk of the skin cancer melanoma, and vice versa, a Mayo Clinic study finds. While further research is needed into the connection, physicians treating one disease should be vigilant for signs of the other and counsel those patients about risk, the authors say. The findings are published in Mayo Clinic Proceedings.

Overall, patients with Parkinson’s were roughly four times likelier to have had a history of melanoma than those without Parkinson’s, and people with melanoma had a fourfold higher risk of developing Parkinson’s, the research found.

Medical experts have speculated about the relationship between Parkinson’s and melanoma for decades, with varying conclusions, the Mayo researchers note. Several studies have suggested levodopa, a drug for Parkinson’s, may be implicated in malignant melanoma, but others have found an association between the two diseases regardless of levodopa treatment, they add.

“Future research should focus on identifying common genes, immune responses and environmental exposures that may link these two diseases,” says first author Lauren Dalvin, M.D., a Mayo Foundation Scholar in Ocular Oncology. “If we can pinpoint the cause of the association between Parkinson’s disease and melanoma, we will be better able to counsel patients and families about their risk of developing one disease in the setting of the other.”

The Mayo study used the Rochester Epidemiology Project medical records database to identify all neurologist-confirmed Parkinson’s cases from January 1976 through December 2013 among Olmsted County, Minn., residents. The study examined the prevalence of melanoma in those 974 patients compared with 2,922 residents without Parkinson’s. They also identified 1,544 cases of melanoma over that period and determined the 35-year risk of Parkinson’s in those patients compared with the risk in the same number of people without melanoma.

The results support an association between Parkinson’s disease and melanoma, but argue against levodopa as the cause, the researchers conclude. It is likelier that common environmental, genetic or immune system abnormalities underlie both conditions in patients who have both, but more research is needed to confirm that and refine screening recommendations, they say.

In the meantime, patients with one of the two diseases should be monitored for the other to help achieve early diagnosis and treatment, and they should be educated about the risk of developing the other illness, the researchers say.

The study’s senior author is Jose Pulido, M.D., an ophthalmologist at Mayo Clinic in Rochester, Minnesota, who treats eye melanoma.

Article from Science Daily.

6 of the Best Apps for Chronic Illness Management

August 1, 2017 Education, Life

Managing a chronic illness can be difficult. There are many different medications to take (often at different times), appointments to remember, symptoms to keep track of, and lots of information to absorb. Thankfully, living in a digital age means that there are numerous mobile apps that can help you manage your chronic illness.

We’ve put together a list of some of the best mobile apps for managing your chronic illness:

Medisafe is an app that helps patients manage medications. It helps with dosage and reminds you when you need to take your meds, increasing adherence rates. The information can also be shared with your healthcare team and pharmacy.

Pain Diary works for anyone with a chronic illness. It allows patients to chart and score pain as well as record and track other symptoms of the disease such as fatigue and mood swings. This app also has a feature where patients can connect with others living with the same chronic illness and swap best practices.

ZocDoc is a handy app if you’ve recently been diagnosed with a chronic illness, since one of the first things you’ll need to do is find a doctor to treat you. ZocDoc allows you to search for local specialist doctors who are approved by your insurance company. The app will even tell you when the doctor is available to see you.

My Medical Info is an app that stores all your relevant health history and insurance details. This makes filling out those endless forms a little less challenging, since you won’t have to rely on your memory for all the details. The app will also allow you to program in doctors’ appointments and all the medications you’re taking.

Fooducate helps you keep track of your diet and make healthy choices. Eating well is an integral part of managing any chronic illness and this app will help you to eat the right foods and get you to a healthy body weight. You can program in how many calories you want to consume a day and then add in the food choices you make, the app will work out the nutritional values of everything you eat and tell you how many calories you’ve consumed. It also works in conjunction with many fitness apps to add in details of any physical activities and calories burned.

Sleep Cycle helps you get the best out of your sleep. The app analyzes how much sleep and the quality of sleep you get each night and you can also have the alarm set to wake you when you’re in your lightest sleep, leaving you feeling less groggy and more refreshed each day.

Article from Parkinson’s News Today.

Substantial Matters: Life and Science of Parkinson’s – podcasts

July 1, 2017 Education, Life

The Parkinson’s Foundation has produced a series of podcasts, titled ‘Substantial Matters: Life and Science of Parkinson’s’. The free episodes, hosted by Dan Keller, will discuss a wide range of Parkinson’s topics, including early warning signs, treatments, exercise and nutrition.

For more information, visit parkinson.org/podcast.

Parkinson’s and malnutrition: what are the risks and how do you prevent it?

June 1, 2017 Caregivers, Education, Life

Parkinson’s is a complicated condition and while many people with Parkinson’s live a long and healthy life, this is not the case for everyone. A recent study found that possibly as many as 60% of people with Parkinson’s are at increased risk for malnutrition.¹ “Increased risk” doesn’t mean that 60% of people with Parkinson’s will develop malnutrition, it just means that there is a higher possibility of malnutrition – but it is a good idea to be aware of all its possible causes, so that you can minimise the risk.

The risks and how to minimise them

Below are descriptions of some common nutrition-related concerns that may occur as a result of Parkinson’s, followed by suggestions that could help to resolve the problems.

Sense of smell
One of the first symptoms of Parkinson’s can be loss of the sense of smell, a sense that is necessary in order to taste food. While lack of taste and smell doesn’t always affect appetite, it can become a factor.

Suggestions: Choose favourite or especially desirable foods. Focus on flavour intensity – lemon, garlic, soy sauce, cinnamon, cloves, nutmeg, herbs; and “mouthfeel” – foods that are crunchy, creamy, chewy or have other appealing textures that make them more agreeable when scent and flavour are lacking.

Feeling nauseous
Medications used to treat Parkinson’s often cause nausea.

Suggestion: Ginger is very effective at counteracting nausea. Keep some fresh ginger in the freezer and use it to make ginger tea, or chew a slice of ginger. Keep a container of crystallised ginger handy, to take while on errands or travelling. Even powdered ginger can be used to make tea.

Medication regimes
Medications may cause loss of appetite.

Suggestion: Discuss this with your physician. If medication-induced, it may be possible to try a different medication.

Low mood
Depression is common among people with Parkinson’s and can affect willingness to eat.

Suggestion: Discuss this with your physician. Depression can be due to deficiency of B vitamins, vitamin D, omega-3 fatty acids, or other nutrients – a blood test will show whether this is the case and, if so, supplements should help. In some cases, depression can be alleviated by attending regular counselling sessions, however, some people may require antidepressant medication.

Late-stage Parkinson’s
The stage of Parkinson’s can be a factor, because as it progresses, symptoms often become more severe. In addition, motor fluctuations are more likely to occur in later-stage Parkinson’s. ‘Off’-time, dystonia, and dyskinesia can make it difficult both to eat, and to time medications and meals.

Suggestion: Ask your doctor about a longer-lasting medication, such as Stalevo, or Rytary, or a pump, so that ‘off’ time is reduced and the timing of medications and meals is more regulated closely.

Calorie deficit
Tremor and dyskinesia can burn extra calories.

Suggestions: If using levodopa, divide the day’s protein needs between morning, midday, and evening meals, taking levodopa about 30 minutes before each meal. In between meals, eat small, non-protein or low-protein snacks, such as fruits and juices, whole-grain crackers or biscuits, tomato or vegetable soup. These add extra calories without blocking levodopa absorption.

Swallowing and choking issues
Swallowing problems increase fear and risk of choking.

Suggestions: Ask your doctor for a referral to a speech pathologist, who can evaluate your swallowing function, and determine whether you are at risk for choking. If so, the therapist can demonstrate safe swallowing techniques, and recommend chopped, puréed, or otherwise altered foods and liquids. You should also be referred to a dietitian, who can assess your needs and ensure you are getting enough protein and other nutrients.

Motor problems in hands
Rigidity and loss of manual dexterity makes it hard to manage eating utensils.

Suggestion: Ask your doctor for a referral to an occupational therapist, who can recommend specially designed plates, bowls, drinkware, and eating utensils that are easier to manage.

Slowed eating
Chewing and swallowing become tiring, cause slowed eating and inability to finish meals. It may take several hours to finish one meal, so the person is unable to consume enough calories during a day to maintain health.

Suggestion: Choose foods that require little chewing. Include nutrient-rich blended smoothies, minced, mashed or pureed meats, fish, vegetables and fruits such as meatloaf, applesauce, mashed peas, potatoes, carrots, or baby foods. If this is insufficient, ask your doctor about placement of a feeding tube. In many cases, individuals can still eat and enjoy food by mouth; but the feeding tube ensures sufficient fluids to prevent dehydration, and enough protein, vitamins, and minerals for complete nutrition.

Seeking helpFor some people, Parkinson’s may present barriers to good nutrition. These can be difficult to deal with. Being aware of such possibilities is important, so that you can prepare as needed. That includes close communication with your neurologist, and the help of specialised health professionals, for their advice and support. With preparation and an experienced healthcare team, you can overcome, – or even prevent – common causes of malnutrition and related illness.

References
¹Tomic S1, Pekic V2, Popijac Z3, Pucic T3, Petek M2, Kuric TG2, Misevic S3, Kramaric RP2. What increases the risk of malnutrition in Parkinson’s disease? J Neurol Sci. 2017 Apr 15;375:235-238.

Kathrynne Holden, a registered dietitian, has specialised in Parkinson’s disease nutrition for over 20 years. She has contributed to two physicians’ manuals on Parkinson’s, written the booklet ‘Nutrition Matters’ for the NPF (with some of her work for them archived here). Now retired, she maintains a website on Parkinson’s topics.

http://parkinsonslife.eu/parkinsons-and-malnutrition-risks-and-prevention/

Singing Helps Early-stage Parkinson’s Patients Retain Speech, Respiratory Control

First Drug Approved for Dyskinesia in Parkinson’s Disease

Next Stop for PD Research: Outer Space

7 Helpful Hand Exercises for Parkinson’s

At-Home Exercises

Legal Tools for Caregivers

People with Parkinson’s should be monitored for melanoma, study finds

6 of the Best Apps for Chronic Illness Management

Substantial Matters: Life and Science of Parkinson’s – podcasts

Parkinson’s and malnutrition: what are the risks and how do you prevent it?

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Parkinson’s and malnutrition: what are the risks and how do you prevent it?