Caregivers Are Impacted by Damaging Health Care Reform, Too

Posted by  Blake Niver

Guest blogger Blake Niver, 25, of Wasilla, Alaska, along with his brothers Grant, 28, and Bryce, 22, are caregivers to their mother who lives with Parkinson’s. Blake shares his thoughts on the importance of affordable and accessible health care and how to get involved as an advocate for the Parkinson’s community.

According to a study from the National Alliance for Caregiving and AARP, nearly 25 percent of all caregivers are millennials, ages 18 to 34. That’s not the typical image that comes to mind of a caregiver, but it’s the reality for my brothers and me.

My mother, Roberta, was 42 when she was diagnosed with Parkinson’s disease. I was in the fourth grade and still remember the exact moment she told me as we drove home from school — it’s a conversation I’ll never forget.

It took nearly a decade before my mother’s symptoms progressed to the point that it affects her daily activities. Now at 59 years old, she is not able to take the photos she used to love capturing, but she’s still working and counts herself lucky that her symptoms have progressed so slowly. However, as each year goes by, the financial and emotional toll looms larger and my brothers and I are concerned for what comes next.

My mother moved from our home state of Alaska and now lives in Minnesota with my brother Grant, a move prompted by access to more affordable health care premiums. She has insurance through her employer, but she might not be able to work for much longer. Soon, she will need to purchase private insurance and her pre-existing condition of Parkinson’s could subject her to unsustainably high premiums that my brothers and I will have to help shoulder. Right now, my mother is having issues timing her medications. My fear is that in the near future, she won’t be able to visit with a specialist who can help make adjustments to her daily therapies and subsequently, her quality of life will be severely diminished.

This future could become a reality if we don’t take action today.

Just yesterday, I called Senator Lisa Murkowski’s office to tell her to vote “no” on the latest version of damaging health care reform circulating in the Senate. There are a lot tougher conversations to have than calling your senator and sharing your story. I think about what it must have been like for my mother to tell her three young sons about her diagnosis, and I’m heartened to do all I can to help her and others in the Parkinson’s community.

We talk openly as a family about the future and try to prepare as much as possible for the financial and emotional effects of my mother’s progressing disease. My brothers and I never expected to take care of our mother in our 20s, and we hoped that when our mother needed help, we’d be in a much better financial situation to support her. That’s why I feel compelled to do something now to stop legislation that could negatively affect my mother and my family for years to come.

Together, each of us can share our story of what it’s like to live with Parkinson’s or, in my case, to care for someone living with the disease. Make a phone call, send an email or share a tweet — tell your representatives how this latest health care proposal will negatively impact our families. Let’s open up conversations about the importance of affordable and accessible health care for everyone, especially for the Parkinson’s community.

Source:: Fox Feed Blog

Telemedicine to Treat Parkinson’s?

Posted by  Rachel Dolhun, MD, and Rachel Cohen

Doctors are making house calls again. But this time, it’s virtual visits via telemedicine. And, based on a study published last month in the journal Neurology, which found that telemedicine appointments were as effective as in-person ones, this may be the way of the future for Parkinson’s disease (PD) care.

The randomized controlled trial enrolled 195 people with PD with the help of MJFF and other organizations. Participants received either their usual in-person care with their established provider or their usual care plus up to four telemedicine visits with a neurologist they had not previously seen. The study was designed to evaluate feasibility (whether participants completed at least one virtual visit on time) and effectiveness (volunteers’ reported quality of life).

Ray Dorsey, MD, MBA, a study author from the University of Rochester, said “The results showed that these virtual house calls were feasible for people with Parkinson’s disease. People’s care was as effective as with the in-office visits, and the virtual house calls provided the participants with convenience and comfort.”

Telemedicine could bring Parkinson’s specialists to the patients who need them most. Parkinson’s (and aging in general) can limit mobility and make it more difficult to travel. And, some people simply live too far away from specialists. Virtual visits could make Parkinson’s care more accessible and efficient.

Before logging on to see your doctor becomes the norm, though, there’s more to be done. Researchers will hone technology to ensure the full Parkinson’s picture can be captured from afar, and advocates will work to expand insurers’ recognition of and reimbursement for telemedicine.

Source:: Fox Feed Blog

Ask the MD: Myths about Levodopa

By Rachel Dolhun, MD

Levodopa was approved to treat Parkinson’s disease (PD) nearly 50 years ago and today it remains the “gold standard” of treatment. As levodopa is the most effective medication to ease Parkinson’s symptoms, most people will take it at some point in the course of their disease. Misconceptions surrounding it, though, can contribute to fear of starting it or taking optimal dosages. Here I address common myths about levodopa, but always discuss any apprehensions you may have about medications with your personal physician.

  • Levodopa is the only drug for Parkinson’s.
    This drug is the most commonly prescribed medication for Parkinson’s disease, but dopamine agonists (e.g., Mirapex, or pramipexole) and MAO-B inhibitors (e.g., Azilect, or rasagiline) are some of the other medications available to manage Parkinson’s motor symptoms. These can be used either instead of or together with levodopa. (Read more about Parkinson’s drugs.)
  • Levodopa loses effectiveness over time.
    After taking levodopa for some time, it certainly may feel like the drug is less effective. Often, higher and/or more frequent doses are required to control symptoms. However, this is mostly due to gradual worsening of the underlying disease rather than medication’s effects diminishing. As long as you take it, levodopa will remain beneficial. But, if the natural progression of your disease requires higher levodopa doses, side effects — including dyskinesia (irregular, involuntary, uncontrolled movement) — can occur. This may lead to a dose reduction, which, in turn, may limit some of the drug’s benefit on symptoms, such as tremor. (Note that some individuals may not tolerate a dose reduction, preferring dyskinesia to other symptoms.)
  • Levodopa always causes dyskinesia.
    Although most people with PD eventually develop dyskinesia, not everyone does. Dyskinesia’s uncontrolled movements often occur at the same time that other PD symptoms (e.g., tremor or rigidity) are suppressed. Major risk factors include higher levodopa doses, younger age at diagnosis and longer course of disease. Severity of dyskinesia varies greatly from person to person; it can look like mild leg fidgeting, bobbing of the head or body swaying. An extended-release form of the commonly prescribed drug amantadine was recently approved by the U.S. Food and Drug Administration (FDA), becoming the first drug specifically indicated to treat levodopa-induced dyskinesia. Several medical and surgical options for dyskinesia also are in development. (Find out more about dyskinesia.)
  • Avoiding levodopa is the best way to treat Parkinson’s.
    Because of the above concerns, some people may opt for other medications or even look to surgery (e.g., deep brain stimulation) to sidestep levodopa. Every person’s symptoms and medication response is different, which means not everyone will tolerate levodopa or add it to their regimen. However, it shouldn’t be avoided simply for the sake of avoidance. No drug or surgery has been shown to be superior to levodopa for PD, so avoiding levodopa may result in worse overall treatment of PD symptoms. (Previous clinical trials did show a lower dyskinesia risk in those who initially started dopamine agonists as opposed to levodopa, but those on levodopa reported an overall better quality of life.) Work with your doctor to find the best treatment(s) for you. There is no single regimen that is best for everyone.
  • Taking levodopa always requires adjustment of dietary protein intake.
    Dietary protein does affect the absorption of levodopa. (The two are absorbed at the same location in the small intestine.) For many people, this effect is small and not noticeable. For others, eating high-protein foods (e.g., certain dairy products, chicken and red meats) at the same time as levodopa can result in less medication benefit (e.g., wearing off of medication effect and return of symptoms before the next dose of medication is due). Especially in these situations, many doctors recommend separating levodopa from dietary protein intake, generally 30 minutes before or 60 minutes after a high-protein meal. (Discover more about diet and Parkinson’s.)
  • Levodopa is toxic.
    Long ago, levodopa was proven safe and effective for the treatment of Parkinson’s disease and rapidly gained acceptance around the world. However, driven largely by the frequent occurrence of dyskinesia, some researchers questioned whether the drug could potentially be harmful to dopamine-producing brain cells and thereby speed progression of disease. Many studies have failed to support these claims, and a study in newly treated patients showed that those on higher doses of levodopa had better quality of life and less disability compared to those on lower doses, which argues against toxicity.
  • Levodopa dosing is standardized.
    There are multiple FDA-approved formulations of carbidopa/levodopa (e.g., Sinemet, Sinemet CR, Rytary) and the maximum labeled dose of levodopa is not the same for each one. This can lead to patient confusion and insurance company denial of medication coverage. Sinemet’s label dictates a maximum of eight tablets per day, regardless of whether the levodopa dose is 100 or 250 mg, whereas Rytary, an extended-release formulation, lists a maximum levodopa dose of 2450 mg per day. Some of this has to do with differences in the amount of levodopa that is absorbed, but this can vary widely from person to person. An individual’s optimal levodopa dose must be determined by working closely with their movement disorder specialist. Depending on symptoms, duration of disease and efficiency of absorption, a person may require more than what’s listed on the drug’s label. As with all medications, though, the lowest dose that effectively controls symptoms is always best.

Find more on levodopa, other PD medications and things to consider throughout your journey with PD in our Parkinson’s 360 toolkit.

John Y. Fang, MD, a movement disorder specialist and associate professor of neurology at Vanderbilt University Medical Center reviewed this content.

Source:: Fox Feed Blog

* NOTE: The medical information contained in this article is for general information purposes only. The Michael J. Fox Foundation has a policy of refraining from advocating, endorsing or promoting any drug therapy, course of treatment, or specific company or institution. It is crucial that care and treatment decisions related to Parkinson’s disease and any other medical condition be made in consultation with a physician or other qualified medical professional.

ParkinsonTV Episode 1: Exercise and Parkinson’s

PAA is thrilled to highlight ParkinsonTV, a PD information resource initiative for patients, caregivers, and medical professionals piloted by the University of Rochester, in collaboration with Dr. Bas Bloem and Radboud University in the Netherlands.

This educational TV series brings together neurologists, patients, and topic experts to discuss different aspects of living with Parkinson’s and ways to maximize quality of life. The first season will consist of six episodes on exercise, medication, nutrition, advanced therapies, speech therapy, and occupational therapy with new episodes airing each Tuesday at 8:00PM.

First Drug Approved for Dyskinesia in Parkinson’s Disease

By Kristen Teesdale

Adamas Pharmaceuticals yesterday announced U.S. Food and Drug Administration (FDA) approval of an extended-release formulation of amantadine (GOCOVRI) to treat dyskinesia in Parkinson’s disease (PD). 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. (Read more about this and other medications for Parkinson’s disease.)

Read more about extended-release amantadine.

Register for Fox Trial Finder to participate in dyskinesia and other studies to advance PD understandings and therapies.

Source: Fox Feed Blog

real_slim_shaky_shirt_back

LA Support Group Shaking Up Parkinson’s Disease

PAA is thrilled to highlight a new support group called Shaking up LA (Lower Alabama). Lead by John Carmichael, this support group serves the Flomaton, Bay Minette, and Atmore area’s of Alabama. The first meeting of Shaking up LA is September 9th at 9:00 AM from the Atmore Community Hospital Auditorium. This meeting is open to all Parkinson’s fighters, caregivers, medical professionals, or anyone else interested in PD therapy, nursing, education, fitness, or other workshops. This inaugural meeting will include a short meet-and-greet and planning session with light refreshment. For more information about the Shaking up LA support group, please contact John Carmichael at  carmicje14@gmail.com or shakinguploweralabama@gmail.com

Though their first meeting is still a couple weeks away, Shaking up LA is already raising PD awareness and funds through a unique t-shirt design that captures the spirit of confronting PD progression in a truly creative and meaningful way. PAA is honored to be a beneficiary of funds raised through these great shirts and we hope you’ll grab a couple for yourself! Please see below for style, size, and ordering details!

******************************************************************************************************************

In 2000, Eminem recorded “The Real Slim Shady” with the lyrics “won’t the real Slim Shady please stand up.” In the spirit of those shirts, the Real Slim Shaky shirts have been designed by Denny Giles at ShalloWit Design for the Parkinson’s support group, Shaking Up LA (Lower Alabama), as a fundraising shirt for the The Parkinson Association of Alabama, and to shed light on Parkinson’s disease by encouraging serious conversations about support and resources for PD fighters and their caregivers.

  • As a PD fighter, these shirts encourage us to “stand up” as the Real Slim Shaky and live like a warrior each day, realizing each day is a new fight, and that we have the opportunity to shake up the world where we live in spite of Parkinson’s.
  • As a PD caregiver, you can wear this shirt as a show of support for your PD fighter and partner with them through encouragement and participation in living like a warrior.
  • For someone who really wants to help in the fight of Parkinson’s disease, these shirts serve as great conversation starters and allow you to stand up as a voice and engage in meaningful conversations surrounding Parkinson’s disease while providing valuable funds to the APDA for needed research and education.

Regardless of your role, these shirts are meant to encourage you to stand up and live like a warrior each day, and be a new voice for PD wherever you wear them! All proceeds after paying the cost of the shirts will be donated to the Parkinson’s Association of Alabama.

Front of shirt with the Shaking Up LA logo and American flag emblem in the shape of the state of Alabama

 

 

 

Back of shirt with Real Slim Shaky emblem and Each Day is a New Fight real_slim_shaky_shirt_back

 

CLICK LINK TO SEE ALL STYLES AND ORDER…

Visual system changes that may signal parkinson’s disease

Changes in the visual systems of newly diagnosed Parkinson’s disease patients may provide important biomarkers for the early detection and monitoring of the disease, according to a new study published online in the journal Radiology.

“Just as the eye is a window into the body, the visual system is a window into brain disorders,” said lead researcher Alessandro Arrigo, M.D., a resident in ophthalmology at the University Vita-Salute San Raffaele of Milan, Italy.

Parkinson’s disease is a neurodegenerative condition caused by neuronal loss in several brain structures. Parkinson’s disease is characterized by tremors, rigidity or stiffness throughout the body, and impaired balance and coordination.

“Although Parkinson’s disease is primarily considered a motor disorder, several studies have shown non-motor symptoms are common across all stages of the disease,” Dr. Arrigo said. “However, these symptoms are often undiagnosed because patients are unaware of the link to the disease and, as a result, they may be under-treated.”

Non-motor symptoms experienced by patients with Parkinson’s disease include visual alterations such as an inability to perceive colors, a change in visual acuity, and a decrease in blinking which can lead to dry eye. Read more…

Source: Science Daily

Ask the MD: Generic Drugs and Parkinson’s

By Rachel Dolhun, MD

Generic medications are substitutes for brand name drugs. They’re typically less expensive, widely available and commonly prescribed. According to the U.S. Food and Drug Administration (FDA), generics account for nearly 90 percent of all prescriptions filled in the United States. And, they can save consumers and hospitals significant amounts in health care costs.

In the treatment of Parkinson’s disease (PD), one of the best-known generics is the immediate release form of carbidopa/levodopa, which substitutes for Sinemet. Recently, rasagiline — the generic of Azilect (an MAO-B inhibitor) — came on the market. With it, questions arose as to what generics really are, how they gain approval and what to consider when taking them.

Generics Are the Same as Brand Name Drugs
Generic drugs are essentially identical to their brand name counterparts. (More about this below.) They:

  • are equal in strength (number of milligrams),
  • come in the same dosage form (tablet or capsule, for example) and
  • are administered via the same route (e.g., oral, inhaler, skin patch).

Generics are prescribed for the same reason as the brand name (i.e., to treat dyskinesia or ease motor symptoms). Modifications that don’t impact the generic’s efficacy or safety are allowed, so drugs may vary in shape, color, flavor or packaging.

FDA Is Responsible for Approving Generics
Companies that wish to make generic medications must submit an application to the FDA that includes data on the drug’s effectiveness and safety. The active ingredient of the generic (the part that provides treatment) must be the same as that in the brand drug, and it must be absorbed by the body at the same rate and to the same extent. (Up to a 20 percent difference in a drug’s absorption is acceptable.) The inactive components (anything other than the active ingredient) must be safe. To demonstrate these properties, clinical trials often are conducted in which volunteers take both brand name and generic formulations (at separate times). Generic manufacturers also supply information on exactly how and where drugs will be produced, and the FDA inspects facilities to ensure generic production will be consistent and reliable.

Generics Can Be Marketed When Patents Expire
Generics can’t be marketed until a brand name drug’s patent and other exclusivities expire. (That’s why there may be a long lag time between generic drug approval and marketing.) These protections grant, among other things, the sole right to the brand name drug maker to sell the medication for a defined period of time so that they can recover some of the drug development costs. (Drug development takes up to a decade and a billion dollars because of the extensive clinical testing involved.) Patent and exclusivity periods may run concurrently but lengths vary depending on a number of factors; patents may last 20 years and exclusivities up to seven. Once these expire, generics can be marketed, typically at a much cheaper price than the brand name because they don’t require lengthy and expensive clinical trials. As multiple generics for the same brand name come on the market, competition can drive costs down even further.

Considerations for Taking Generic Medications in Parkinson’s
If generic medications are available, you may want to take them because of the financial savings. The best way to figure out if generics are an option is to ask your doctor and/or pharmacist. In some situations, your health insurance provider may require that you use the generic option. If, for some reason, you or your doctor prefer the brand name drug, this must be specified on your prescription and you may have a higher out-of-pocket payment. (Learn more about financial and other assistance programs for obtaining medications here.) If you do switch to generic from the brand name:

  • monitor for new side effects, which may be the same as those for the brand name, but could potentially differ due to inactive ingredients in the generic, and
  • pay attention to any changes in your PD. These would relate to the reason you’re taking the medication. For example, if the medication is to ease Parkinson’s motor symptoms and those seem worse, then perhaps the generic is not ideal for you.

Remember, though, that generics are required to be safe and just as effective as brand name drugs. So, it’s unlikely that they would be less beneficial or cause significant problems. Still, some people don’t respond as well to generics or have new side effects such that they need to take the brand name. As with any medication in your regimen, work with your physician to determine what best suits you and your situation.

Learn more about Parkinson’s medications.

Listen to a webinar on how your doctor chooses your PD medications.

Participate in clinical trials testing new medications for Parkinson’s.

Source:: Fox Feed Blog

Six Misconceptions about Parkinson’s Support Groups

By Nancy Ryerson

After a Parkinson’s disease (PD) diagnosis, you may feel isolated from friends and family who aren’t going through the same experience. Meeting with others living with the disease through a support group can help you feel more connected, and introduce you to local resources you may not be familiar with, too.

Support groups are not one size fits all, however, and it may take a few tries before you find the right match. If you’re hesitant to try one out, read these experiences our community shared. Many people who are apprehensive about joining support groups later find them to be an integral part of life with the disease.

Misconception: Support groups are all business.

Reality: Meetings often feature a speaker and an informative discussion, but many have fun at meetings, too. Several commenters shared that as organizers, they also joke around and enjoy the group’s company. Good food and drink help, of course.

Read more at the Fox Feed Blog