How to Plan for Future Care Costs When You Are Living with a Disability

by Ed Carter
Living with a disability can mean living with unique challenges when it comes to your care. Those challenges can result in added health and living expenses, which you may have no issue covering at this point in your life. As you grow older and your care needs increase, however, it’s important to have a plan in place that will prevent those costs from overwhelming your finances, or even prevent you from accessing the care you need, and planning for these things can help.
 
Adequate Life Insurance  
 
One of the main reasons that you should plan for your future care is to protect your loved ones from having to assume any related costs. That’s why buying enough life insurance should be your top priority. Having enough life insurance coverage will ensure that your family members will have enough funds to pay for end-of-life expenses, including funeral costs and leftover medical debts. With so many tools, resources and guides available online, you can even purchase life insurance from the comfort of your own home, and online calculators can help you figure out how much insurance will provide the most peace of mind. No matter what your role is, whether you are the primary income earner or the primary care provider, having life insurance is a must if you want to protect loved ones from hardship during an already painful experience.
 
A Complete Estate Plan 
 
Life insurance can provide the financial cushion your family will need to stay afloat if you should unexpectedly pass away. If you want those funds to provide the maximum financial benefit to your family, however, you also need an estate plan. Although life insurance funds will pass to your beneficiaries, establishing additional layers of financial protection, such as a will and trusts, can prevent your assets from being distributed by the state and can also help surviving family members avoid costly probate and estate taxes. You may be able to use online tools for basic estate planning, but hiring an estate attorney is your best bet for making sure these documents are legal and that your final wishes are carried out after your passing. Another option is to hire a financial planner to walk you through some of these estate planning steps.
 
Legal Advice and Paperwork 
 
If you want to establish a financial plan for your future care and ensure that plan is carried out by your loved ones, then you will also want to discuss essential caregiving documents with your attorney. For example, if you would like a relative to be able to make decisions regarding your medical care when you cannot do so yourself, you will need a durable power of attorney for healthcare. In order for that family member to make financial decisions, you will need a standard power of attorney, but there are a couple of other legal documents that need to be in place in order for you to receive your desired level of care. Just like with an estate plan, completing this power of attorney and other living legal documents can require a lot of time and attention to detail. So, you may want to have an experienced attorney prepare this paperwork for you.
 
Some Extra Help 
 
If you are living with a disability and close to retiring, you may be more likely to need some variety of care as you get older. Many people find that residing in an assisted living facility enables them to get the help they need (e.g., cleaning, meal planning) while still remaining independent. Before choosing this option, be sure to tour local facilities to figure out which ones have the amenities you need and fit your budget. For instance, in Alabama, the median cost per year for residing in assisted living is $39,000.
 
Creating a financial plan can help ensure that you receive the best care. It can also protect your family from undue financial burdens. So, make sure you include the must-haves above in your financial plan for your future care.

The Apple Watch just got a lot better at tracking symptoms of Parkinson’s Disease

by |

The Apple Watch will soon be able to track tremors experienced by Parkinson’s Disease patients to help them manage their condition.

Later this year, Apple will release a software update to make it easier for medical researchers to understand the difference between a random movement, and the shakes and dyskinesia that Parkinson’s patients experience when they’re getting treated with medications.

Apple made the announcement this week at its developer conference, WWDC.

The new “movement disorder API” will accelerate research that’s already underway in how wearable devices can be used to track the progression of Parkinson’s, said Peter Schmidt, a Parkinson’s researcher and vice dean of the Brody School of Medicine at East Carolina University, who has been advising Apple’s health team.

About 60,000 people are diagnosed every year with Parkinson’s in the U.S. alone and an estimated 10 million people have the disease globally. Not all of these patients will have access to an Apple Watch, or be able to afford one, but Apple is starting to work with health insurance companies like Aetna in figuring out ways to subsidize the cost.

CLICK TO READ THE FULL ARTICLE

Source: CNBC

The Season of Giving

PAA is blessed to have an active, passionate, and growing support network of board members, volunteers, donors, sponsors, and thought leaders. It is because of this generous support – by people just like you – that PAA continues to fulfill and grow the promise of its mission to improve the lives of Parkinson’s patients, caregivers, and loved ones throughout Alabama. We hope you’ll consider a donation to the Parkinson Association of Alabama as part of your holiday giving plans. Every donation matters and plays a role in delivering the PD research and care programs that benefit those affected by Parkinson’s throughout the State.

Click here to donate online or contact Mary T if you’d like to send the gift of a PAA donation to a friend or loved one. For gift donations, we can send the lucky recipient a beautiful card on your behalf to notify them of your gift.

 

Naked Art to celebrate Valentine’s, raise money for local causes

PAA is thrilled to be the beneficiary of a Parkinson’s Patients Art Show, hosted by Naked Art Gallery. Below is a great article from Iron City Ink that details the personal connection between Parkinson’s Disease and Vero Vanblaere, owner of the Naked Art Gallery.

Read more

Source: Iron City Ink

Sniff Test for Parkinson’s Disease

By Michael J. Fox Foundation

Lack of objective tests to diagnose Parkinson’s disease (PD) challenges drug development and patient care. While scientists are looking to pinpoint PD earlier through skin and spinal fluid, there is also promising research on some less invasive methods. In this podcast, host Dave Iverson talks with two researchers on the significance of these non-invasive tests.

“What we’re doing now is to really try and identify whether there’s a particular secretion in the skin of Parkinson’s patients and what it smells like and then how can we detect it,” says Samantha Hutten, PhD, senior associate director at The Michael J. Fox Foundation, which is funding projects to sniff out Parkinson’s disease.

Another MJFF-funded study led by Mark Baron, MD, professor of neurology at Virginia Commonwealth University, breaks down what eye movement means in relation to PD.

“If you look at a target — assuming we aren’t going to have Parkinson’s disease — and we stare at a dot on a screen, our eye is not moving. People with Parkinson’s disease — it’s moving in all directions, so it’s not staying perfectly still,” says Dr. Baron.

Tune into to the live discussion in our next webinar this Thursday, October 19, at 12 p.m., where we discuss how these screening methods and others could lead to earlier PD diagnosis. Register today.

Like what you hear? Subscribe to The Michael J. Fox Foundation Parkinson’s Podcast in iTunes or your podcast mobile app. Please consider leaving us a rating on iTunes and sharing the series with your network.

Learn more about the search for a test for Parkinson’s disease in our guide.

View a text transcript of this podcast.

Source:: MJFF Podcasts

Parkinson’s patients find balance, stamina in ‘Rock Steady’ fitness class

By Kym Klass

Jack Noble has noticed two positive changes in his body since attending the Rock Steady Boxing class at MetroFitness: his breathing, and his stamina.

The 85-year-old was diagnosed with Parkinson’s disease four years ago, and in this new class brought to the east Montgomery fitness center that focuses on strength, balance and agility, Noble appreciates it for its movement and for “really feeling like I’m getting a workout.”

With more than 10 million people worldwide living with Parkinson’s disease — 60,000 Americans are diagnosed every year — exercise has been proven to help alleviate…CLICK TO READ FULL ARTICLE

Source: Montgomery Advertiser

 

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.