Showing posts with label SBMA. assisted living. Show all posts
Showing posts with label SBMA. assisted living. Show all posts

Wednesday, May 1, 2019

Study of High-intensity Training for SBMA Patients

SMA News Today published the following report on a recent "small" study. The number of participants and the duration of the study concerns me. I hope they follow up with more participants of various stages of progression, and for a longer period of time (six months or more).


High-intensity Training Improves Fitness While Being Safe for Patients with Kennedy’s Disease, Small Study Suggests

High-intensity training can improve fitness and may be performed safely by patients with spinal and bulbar muscular atrophy (SBMA), a small pilot study suggests.

According to patients, high-intensity training (HIT) did not increase their muscle fatigue and was preferred to other workouts. Although more studies are needed to understand the long-term benefits and compliance of patients to HIT, researchers recommend that the exercise be considered as part of rehabilitation therapy for SBMA.

The study, “High-intensity training in patients with spinal and bulbar muscular atrophy,” was published in the Journal of Neurology.

Exercise of low or moderate intensity does not seem to benefit patients with SBMA — a rare adult-onset form of spinal muscular atrophy (SMA) also known as Kennedy’s disease — which is characterized by muscle wasting and weakness in the arms and legs. In fact, low- and moderate-level exercise can produce muscular fatigue in these patients.

HIT is a form of cardiovascular exercise that alternates short periods of intense anaerobic exercise with less intense recovery periods. This type of workout has been shown to be time-saving and efficient for healthy individuals. HIT may also benefit SBMA patients because motor neurons — the nerve cells that control muscle activity and are damaged in SBMA — are only active for a small period of time.

To test this possibility, researchers at the University of Copenhagenand Aarhus University Hospital, in Denmark, conducted a small study to investigate if HIT is feasible and safe, and if it can improve the fitness in SBMA patients.

Patients were randomized to a supervised eight-week training, followed by optional self-training for another eight weeks, or they received no training (usual care) followed by an unsupervised, at-home eight-week training.

Training included eight minutes of warm-up followed by two five-minute cycles on a stationary bike, with three minutes of recovery in between. Each cycle was based on the 30–20–10 s concept, which consisted of low-, moderate-, and high-speed cycling for 30, 20, and 10 seconds, respectively, in five minutes.

Before training, the patients received a class and an audio file with a recorded training guide to use at home. During training, they wore a pulse-watch to record heart rate, intensity of training, and patient compliance.

Of the 10 male SBMA patients who participated, eight completed the study — half in the supervised and the other half in the unsupervised group.

Both maximal oxygen consumption (a measure of exercise capacity) and maximal workload were tested before and after the training program during an incremental exercise test — a test where participants have to perform exercise that increases in intensity over time.

Taken together, training improved both fitness and workload performance in all patients after eight weeks. This was evidenced by an 8% increase in maximal oxygen consumption and a 16% greater maximal workload, compared with the start of the study.

The training was safe, as judged by stable creatine kinase levels, a blood marker of muscle damage. Patient-rated muscle fatigue, muscle pain, and activity levels also remained the same over the training period.

Moreover, all patients preferred the high-intensity training compared with other workouts. In fact, three of the four patients who completed supervised training wished to continue the program for eight more weeks without supervision.

At the end of their entire training period (16 weeks), the participants maintained their improvements in maximal oxygen consumption and workload.

However, the training program did not change the patients’ walking capacity (as assessed by the 6-min walk test) and tended to reduce their walking distance slightly from a daily average of 3.1 to 2.4 km.

“In conclusion, HIT is well-tolerated and safe for patients with SBMA. It increases fitness and training does not decrease patient’s daily activity level, and should be considered as a rehabilitation strategy for patients affected by SBMA,” the researchers wrote.

Compared with other low- and moderate-level training modalities, HIT seems to work better to improve patients’ fitness and is favored by patients, they said.

“A likely explanation for the efficacy of HIT and inefficacy of lower intensity training in SBMA could relate to the longer period of restitution between training bouts, and the shorter period that the large motor units in SBMA need to be active vs. longer duration low-to-moderate-intensity training,” the researchers said.

Future studies should evaluate the long-term effects and compliance of high-intensity training for this patient population, they added..

Friday, August 3, 2018

Financially Prepare For Assisted Living

Today's topic is a guest post by Hazel Bridges (hazel@agingwellness.org). Planning for the future is important to most of us living with Kennedy's Disease, but also for any family with senior citizens liiving at home. Thanks, Hazel.

7 Things You Can Do to 

Financially Prepare For Assisted Living

By Hazel Bridges

Medicare is useful in many ways. However, Medicare doesn’t cover very much when it comes to assisted living. As a result, you will need to be prepared for whatever circumstances you might run into in the future. Here’s how you can plan financially for you or a loved one so you can be prepared for whatever curveballs life might throw your way.

Figure Out Which Kind of Housing Is Necessary

As pointed out by a recent Forbes article, when most people think of long-term care, their first thought is nursing homes. However, there are a variety of assisted living facilities that also provide substantial benefits. The trick is finding out which ones are best. Assess your loved one’s needs and see which facilities suit it best. Try to get it right the first time, since moving from home to home can be difficult.

Upgrade Parts of the Home

When it seems like assisted living might be part of the inevitable future for your loved one, consider ways that you can upgrade the home they live in to help them maintain a little bit of independence and keep things easier for everyone. Do small things like installing grab bars in bathrooms, removing loose rugs or carpet on the floor, or installing a chair lift. This helps your loved one live in their home a bit longer, which can free up money for care.

Leverage Life Insurance

Some life insurance plans can be used for what are called advanced death benefits (ADBs), which can help in paying for your loved one’s care. The US Department of Health and Human Services describes ADBs as life insurance features that allow a tax-free advance on your life insurance policy while you are still alive. If you’re unfamiliar with your insurance policy or aren’t sure about the terms of ADBs, talk with your provider about the details of the benefits.

Talk to a Financial Advisor

Many seniors wonder where they can get sound financial advice that can help them or their families financially prepare for an assisted living scenario. A couple of good resources to consider are banks, community center events, and the AARP, all of which will likely have financial advisors who can assist for little to no cost.

Look Into What Tax Breaks You Can Take

Tax breaks are available to seniors whose medical expenses, including some of their assisted living costs, exceed 7.5 percent of their adjusted gross income. If you care for your loved one, you should look into some of the tax benefits that you qualify for because of your role.

Consider Government-Assisted Programs

There are programs like Section 202 Supportive Housing for the Elderly that provide subsidized housing options where seniors can get assistance with tasks like cooking, cleaning, and transportation. One disadvantage of many of these programs is that they have lengthy waiting lists, so if you’re looking into it, get on them now.

Consider a Reverse Mortgage

If your loved one owns a home, they might be able to afford some long-term care by using a reverse mortgage. A reverse mortgage allows the homeowner to borrowmoney against the equity that they have in their home. This money doesn’t have to be paid back to the bank until a future time. However, the amount due on the loan must be paid if your loved one dies or changes their primary residence. A reverse mortgage isn’t right for everyone, so be aware of the financial implications of receiving one and get familiar with the unique contract wording.

It’s important to secure your future. Change can come eventually, or it can come tomorrow. Work regularly to do what you can to ensure you or your loved one’s financial security so you can live worry-free. 
Image via Pixabay