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.

I’ve Made BIG Improvements with Parkinson’s Therapy Program

I have been seeing a physical therapist four times a week for the last month. I hadn’t injured myself, though I experience aches and pains with Parkinson’s disease. My neurologist referred me to a physical therapist who teaches the BIG program. The LSVT BIG program is designed for people with Parkinson’s to bring their movements […]

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by Sherri Woodbridge from Parkinson’s News Today

Don’t Worry, Be Happy: Parkinson’s and the Limits of Positive Thinking

I don’t want to take away from Mad magazine’s Alfred E. Neuman or singer-songwriter Bobby McFerrin, but the idea that a pair of rose-colored “don’t worry” glasses will change my life for the better has never sat well with me. Pollyanna is not a guest in my home. “Look at all the wonderful things in […]

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Life Doesn’t Allow Do-overs, So Move On from Guilt

Sometimes, I beat myself up when something goes wrong in my life. I convince myself that if I had only done it this way instead of that way, things may have turned out so much better. Or, if I had only said something different, I might have been more helpful. But there are no do-overs in life.

Truth versus a lie

Isn’t it much easier to play the negative tapes stored in the recesses of our brains than it is to listen to truth tapes? It is for me.

I remember arriving at one of my Parkinson’s appointments several years ago carrying a load of guilt. If only I hadn’t used so much bleach to whiten the clothes or so much 409 to clean the cupboard doors. Ant spray, wasp spray — you name it, I’d probably used it. I had truly convinced myself I’d had something to do with “getting” Parkinson’s. My doctor finally helped to lift my burden by telling me the truth: It wasn’t my fault. READ MORE

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‘Exergaming’ on Stationary Bicycle Eased Parkinson’s Motor Problems

Exercising at home with a stationary bicycle — using a motivational app and remote supervision to increase compliance — eases motor complications in patients with mild Parkinson’s disease and improves their cardiovascular health, according to results from a clinical trial.

Findings from the study, “Effectiveness of home-based and remotely supervised aerobic exercise in Parkinson’s disease: a double-blind, randomised controlled trial,” were published in the journal The Lancet Neurology.

Though high-intensity aerobic exercise has shown motor benefits in people with Parkinson’s, the effectiveness of home-based programs in a broader patient population has not been determined.

A team from Radboud University Medical Center, The Netherlands, designed the “Park-in-Shape” intervention that incorporates virtual reality software and real-life videos — a so-called “exergaming” approach — to make exercising on a stationary bicycle at home more engaging.

Overall, the single-center, randomized trial (NTR4743) tested whether this type of aerobic exercise would improve motor function in patients with mild disease severity (a Hoehn and Yahr stage 2 or less) who were on stable dopaminergic treatment or not yet started on such therapies.

To be included, the patients (ages 30–75) had to exercise less than is recommended for older adults, meaning vigorous exercise over 20 minutes up to two times per week, or moderate exercise over 30 minutes up to four weekly sessions.

The study compared two groups, in which all 130 patients exercised three times per week over six months and were on stable dopaminergic medication (stable dose for at least one month), or were still without treatment and expected not to start treatment within the next month.

But while 65 patients performed stretching, flexibility and relaxation exercises in 30-minute sessions (control group), the other 65 patients exercised for 30 to 45 minutes on the stationary bicycle at home (intervention group). The patients were instructed to cycle at a target heart rate zone, which was gradually increased as the participants became fitter.

All participants had a motivational app with tips for optimal training, support from loved ones, and information to track progress. All were supervised once at home and also remotely every two weeks.

Patients were evaluated during their “on” and “off” states — when dopaminergic medication is still effective, or when it wears off.

Results showed that the patients exercising on the stationary bicycle had  significantly better motor function after six months. Specifically, in their “off” state, the increase in their Movement Disorders Society—Unified Parkinson’s Disease Rating Scale score was 4.2 points lower than that of the controls. Also, unlike the controls, patients on aerobic exercise experienced improvements in cardiovascular fitness by the end of the study.

“Aerobic exercise can be done at home by patients with Parkinson’s disease with mild disease severity and it attenuates [lessens] off-state motor signs,” the scientists wrote.

In contrast, no benefits were seen in non-motor complications such as fatigue, anxiety, depression, or cognitive function, which the researchers attribute to the short duration of the intervention.

Over the span of the study, the mean number of aerobic exercise sessions was 54, while that of the control sessions was 60. This corresponds to 75% and 83% of the expected 72 sessions for each group, respectively.

“We were pleasantly surprised that people with Parkinson’s disease were able to adhere to their exercise regimes so well,” Nicolien van der Kolk, the study’s lead author, said in a press release. “The beneficial effect on their motor disability was also large enough to be clinically relevant. As such, exercise is a very useful addition to the medication.”

Five patients were lost to follow-up, four of whom were in the cycling group. Ten patients in each group did not complete their assigned intervention, with technical issues being the main reason for discontinuation in the cycling group. However, as they attended the follow-up visit, these patients were included in the analysis.

Eleven patients experienced adverse events (AEs, or side effects) potentially related to the intervention, seven of whom were in the cycling group. These included back or joint pain and palpitations. Three patients discontinued exercise due to AEs.

In turn, the seven serious AEs observed (three in the cycling group) were all unrelated to the program. They included knee and fall-related injuries, hip fracture, and severe dyskinesias, which refer to involuntary, jerky movements.

“This study is very important,” said Bas Bloem, MD, PhD, the study’s principal investigator. “We can now start researching whether much more long-term cycling can also slow the disease progression.”

“Also, this new ‘exergaming’ approach that we have developed is very suitable to achieve long-term improvements in exercise behavior for patients with a range of other disorders that could also benefit from regular exercise,” Bloem said.

“Future studies should establish long-term effectiveness and possible disease-modifying effects,” the researchers concluded.

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