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.
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
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
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.
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.
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.)
Source: Fox Feed Blog