Latest news with #multipleSclerosis
ABC News
an hour ago
- General
- ABC News
NDIS changes leave immobilised clients without underwater scuba therapy
Aisla Dehe has had multiple sclerosis (MS) for 25 years and the progression of the disease has left her unable to stand or walk. The only time she can move is underwater. "I'm finally free [underwater]. I can run, jump, lift weights," she said. "It helps with stiffness in my muscles and manages my pain." Every week Ms Dehe attends Scuba Gym, a specialised underwater therapy program on the New South Wales Central Coast for people with disabilities. Clients, aided by divers, do strength and balance training, including the use of weights and underwater parachutes. Under regulations announced in late 2024, Scuba Gym is no longer included in the National Disability Insurance Scheme (NDIS) support list which dictate what recipients can choose to spend their allocated funding on. There are more than 37 categories in the NDIS supports list including "exercise physiology and personal wellbeing activities". Clients of the specialised underwater therapy program were previously able to access NDIS funding through the section referred to as "Other". Ms Dehe said she was "absolutely devastated" that Scuba Gym was not accepted into a bracket. Scuba Gym owner and experienced diver Lyndi Leggett said the changes to the scheme have made it "extremely confusing" for her and the broader community of people with disabilities. "It's really perplexing and hard to navigate," she said. "Even though we have provided numerous testimonials and shown [the NDIS] our evidence that our clients truly benefit from the service, it's not being recognised. In a statement the NDIS said Scuba Gym does not meet the criteria for its therapy supports which must be evidence-based and delivered by an allied health professional. For the NDIS to fund it needs to demonstrate that the therapy will provide a disability-related functional outcome. Lynne Smith has had MS for more than 37 years and never touched a wetsuit before joining the program. She said that in the year she has been a Scuba Gym client she has already seen immense physical results. "I felt like I was wearing gloves and socks my whole life because I just had no feeling," Ms Smith said. "[But] this program has made a world of difference for me. "All the movement that I do underwater has translated to my life on land and drastically improved my wellbeing." Ms Smith said she fears for how her and other clients' conditions will fare if they can no longer get the funds to access the underwater therapy service. Professor Chris Grainage from the University of Newcastle spent almost 20 years in the Royal Navy, training in underwater and diving medicine, and afterwards in respiratory medicine. He said despite limited research on the benefits of scuba diving there were advantages for cardiovascular health and muscular resistance training. "Like with any form of physical activity it has its health benefits, especially for people who are limited in their physical abilities," he said. "There has been research on injured ex-service personnel before and after scuba diving exercises and [they] certainly improved. "It noted benefits including mindfulness, focusing on one task at hand, and that being part of social groups enhances people's mental and physical health." Ms Leggett and her team said they would continue to advocate for their program to be included under the scheme. "We will keep lobbying. I think it's hard to be considered because it's a new therapy and we're doing things that a lot of other therapy services aren't," she said.
WebMD
15 hours ago
- General
- WebMD
The Myth of the Perfect Patient
Nearly three years after my multiple sclerosis diagnosis, I've gone through more lifestyle changes than most people experience in a decade. I've been the health fanatic, the carefree spirit, and everything in between. Leading up to my diagnosis, I had already cut out gluten and dairy and was working with a nutritionist. But once I was hospitalized for my MS, I took things to an extreme. I fueled all my despair and anxiety into an obsessive focus on my health. I dove headfirst into the highest level of the Wahl's protocol with some additions: no carbs, no legumes, no nightshade vegetables, no cruciferous vegetables, no garlic, no onion, no sugar, no alcohol, low glycemic index fruits only, no vegetable oils, no coffee, no added sugars, no eggs, and only grass-fed and antibiotic-free proteins. My daily nutrition consisted of 9 cups of vegetables with high-quality protein and healthy fats at each meal. My only "treats" were berries, herbal tea, and kombucha. I lived like this for over a year while doing 18-hour fasts daily. The lifestyle changes were just as stark. I was in bed by 8 p.m. every day. I stopped going out, avoided restaurants, and stayed away from crowds out of fear of my new immunosuppressed status. I did acupuncture weekly, breath work, meditation, yoga, and consistently met with a nutritionist, health coach, and therapist. I was also on an elaborate vitamin regimen, taking multiple supplements with each meal: omega-3, selenium, zinc, vitamin D, turmeric, ashwagandha, vitamin B, probiotics, sea moss, iron, magnesium, and many more. Living like this was a full-time job. The only way I could really pull it off was short-term disability and working remotely. I worked with multiple functional medicine providers and spent an obscene amount of money on this lifestyle. Looking back, I don't even want to calculate how much it all cost. I genuinely thought that would be my life forever. It felt like my old life had ended with this diagnosis, and I'd spend my remaining days isolated from society, eating mostly vegetables, and spending all my money on organic foods. But about a year and a half later, after all my repeat MRIs came back clear, I started to loosen up. I began to travel again, which forced me to accept that I was going to eat foods that didn't adhere to my strict guidelines. I moved to a new city and realized creating a social life wouldn't be possible if I refused to go out. I started to feel safe in my disease's stability. Slowly, I began to live more like an average 25-year-old would. I went out on weekends, took trips, stayed up too late to hang out with friends, ordered food without checking if the meat was grass-fed, and most importantly, started enjoying the simple things again. People noticed the change. When I once needed 20 minutes to approve a menu before we went to a restaurant, I was now easy-going and spontaneous. I was having fun and so grateful to have a sense of normalcy back. Comparing my diet and lifestyle now to when I was first diagnosed, it would be safe to say I've completely "gone off the rails." But looking back, I was too hard on myself. I was scared and tried to control every aspect of my diet and lifestyle to prevent more flares. Once I was able to trust the medicines, adjust to immunosuppression, and feel better, I realized how lucky I was for this second chance at life. The pendulum had swung from one extreme to another. From hyper-vigilance to something resembling freedom. And neither extreme felt quite right for long. What I've learned is that there's no perfect way to manage MS. I have to find an approach that balances health with actually living a life worth the effort of staying healthy. Some days, that has to mean green smoothies and resting. On other days, it can mean staying out late with friends to drink all the sugary drinks we can find. In truth, I'm still figuring out where the middle ground is. But I know one thing for certain: The perfect patient doesn't exist. And pretending otherwise just adds unnecessary suffering to an already challenging journey. Having MS does come with its responsibilities, but expecting myself to be the perfect patient all the time has led to burnout. Instead of focusing on being the perfect patient, I've decided to focus on getting my spark and spirit back after a hard diagnosis and journey to stability. And lately, it truly does feel like I've found a part of myself again that I had lost in my journey.
Medscape
17 hours ago
- Health
- Medscape
Home-Based Exercise as Effective as In-Clinic Care for MS
PHOENIX — In the first randomized phase 3 trial to compare a home-based and facility-based supervised exercise program in patients with multiple sclerosis (MS), outcomes were equivalent at both 16 and 52 weeks. These findings now support home-based exercise as an evidence-based option for patients who prefer to work out at home. Evidence of equivalence from a controlled trial is useful because 'home-based exercise programs might improve both access and adherence for at least some patients,' said study investigator Deborah Backus, PT, PhD, vice president for research and innovation at the Shepherd Center, Atlanta, Georgia. The findings were presented May 29 at the Consortium of Multiple Sclerosis Centers (CMSC) 2025 Annual Meeting. First Phase 3 MS Exercise Trial Conducted at eight participating US centers, the STEP trial was limited to patients with modest walking impairment. An Expanded Disability Status Scale (EDSS) score of 4.5 to 6.0 was among the entry criteria designed to select a population that was still ambulatory but with a need for intervention to preserve function. 'We wanted patients who can walk with some measured and perceived limitations but who were still able to exercise safely,' said Backus. The similar facility- and home-based regimens were based on Guidelines for Exercise in MS (GEMS). In one segment of the trial, 189 patients were randomized to the facility-based (GEMS-F) or the home-based (GEMS-H) programs. In the second segment of the trial, 190 patients were permitted to select their program, creating choice GEMS-F and choice GEMS-H groups that were compared with each other and with the randomized groups. The primary outcome was the timed 25-foot walk test (T25FW). Other outcomes included the 6-minute walk test (6MWT), change in EDSS, and scores on the 12-item MS walking scale (MSWS-12). All outcomes were evaluated at 16 weeks and again at 52 weeks after the exercise programs were initiated. Expressed in least-squares means adjusted for age, sex, and baseline EDSS, the improvement from baseline in T25FW was significant for all study groups and was similar between the GEMS-F and GEMS-H groups, in comparisons within and between the randomized and choice patient populations. Also consistent across all four study groups, a substantial proportion of the improvement was lost between weeks 16 and 52, even if at least a numerical and, in some cases, a statistical advantage was maintained relative to baseline. The 6MWT and MSWS-12 outcomes showed a similar pattern with a substantial improvement at 16 weeks that eroded over subsequent follow-up. Again, there was a numerical advantage at 52 weeks over baseline in all of the groups even if it did not reach significance in every arm. The mean group EDSS scores, which were relatively preserved from baseline to week 16 declined from that timepoint to week 52 in all study groups. There were modest differences in baseline characteristics among the four study groups, but the impact of the COVID pandemic was a major limitation of the study, said Backus. Dropouts by 52 weeks were substantial throughout the study population but were greater among those in the GEMS-H group, who were less likely to return to the facility for assessments. Although exercise regimens in terms of aerobics and resistant training were the same for all groups, Backus acknowledged that there were some differences in access to equipment. For example, participants in the GEMS-F group performed aerobic training on treadmills that were not necessarily available to all of those in the GEMS-H group, even if other forms of aerobic exercise were substituted. Overall, Backus said that exercise intensity and other key aspects, such as coaching, were similar in the GEMS-F and GEMS-H groups. Evidence Base for At-Home Exercise Commenting on the findings, Robert W. Motl, PhD, professor of kinesiology, nutrition, and rehabilitation, University of Illinois, Chicago. and a co-chair of the session where the study was presented, noted that regardless of whether patients completed the exercise program at home or in a facility, all of them were provided with resources for fall prevention, and the lack of serious adverse events in any arm is an important finding from this study. 'With no safety differences and a comparable effect, the results provide an evidence basis for exercising at home, which is more convenient for patients and more cost-effective,' Motl said. Another expert in rehabilitation for patients with MS, Frederick W. Foley, PhD, assistant professor in the Department of Neurology, Albert Einstein School of Medicine, Bronx, New York, agreed that the research provides support for home-based exercise in MS patients. 'There is a need to reduce the dependence of MS patients on care within a hospital or outpatient facility,' said Foley, who was not involved in the trial. 'It is not only less convenient and potentially more costly to receive care in a facility, but patients are also generally more comfortable in their own home,' he said. The loss of benefit from week 16 to week 52, although expected and consistent with other lifestyle interventions, was disappointing. He pointed out that sustained benefit from exercise is elusive regardless of setting. 'The difficulty of achieving long-term benefit from behavioral interventions is pretty well recognized,' Foley said. He called this the 'biggest challenge' for extending an exercise treatment effect.
Yahoo
2 days ago
- Health
- Yahoo
Starpoint '76 grad embarking on 4,300-mile Bike the US for MS ride
A Lockport native who's a lifelong cycling enthusiast will undertake her first cross-country ride as a member of the Bike the US for MS, Northern Tier Route team, beginning next week. Darcy Whitsett, a 1976 graduate of Starpoint High School, said the 31-rider team will be in Lockport on June 20, staying overnight at Trinity Lutheran Church, and she'd appreciate it if, when they arrive in the city, they experience some fanfare. 'I am hoping to see hundreds of supporters wearing orange (the color of MS awareness) as we ride into Lockport,' Whitsett said. A U.S. Navy veteran and longtime Virginia resident, Whitsett, 66, recently retired from Secrets In Lace, the lingerie company that she and her husband Dan founded 40 years ago. Retirement is what made her first cross-country bicycle trek possible. 'My whole family — five kids and our parents — were bike riders. I still remember us going to (Dick Cummings') Schwinn store downtown,' she said. 'When I was in college, I read about a cross-country ride, and I wanted to do it, but ... I couldn't fit it in with everything else in my life. I never let go of it, though.' Bike the US for MS, Northern Tier Route is a 71-day, 4,295-mile trek through 15 states, starting in Bar Harbor, Maine, on June 6 and ending in Seattle, Washington, on Aug. 16. The team members are raising donations to cover assistive services for people managing multiple sclerosis and support research to find a cure for the neurological auto-immune disorder. According to Whitsett, seven days of the trek will be given over to team service projects such as visiting MS support centers, assembling scooters, painting ramps and completing outdoor home improvement projects for people with MS who can no longer maintain their own home. Overnights mostly will be spent in tents and the team members are expected to feed themselves on their own dime. While the cross-country opportunity is what drew Whitsett to sign up for the ride last July, the cause is not unfamiliar to her. Two dear friends from her childhood are battling MS today, she said, and the more she talks to people about the ride, the more people she's meeting who have the disease or know someone else who does. From her friends and her own reading on the subject, Whitsett has learned: MS strikes all ages, moreso those over 40, and more women than men; the disease can go into remission and flare up; and it can affect people differently. She said her lifelong friend Tricia O'Connor Leydecker of Lockport was diagnosed with MS 20 years ago and presently is 'unstable' and using a cane. Amongst the Northern Tier Route team members there is ongoing competition for the honor of raising the most money, and Whitsett has been at or near No. 1 consistently, having raised more than $12,000 herself since she signed up for the ride. When she slipped to the No. 2 position as of May 22, she vowed to get back to No. 1 while cheering on the team, which collectively had raised almost $200,000 to date on a $250,000 goal. Whitsett has taken part in a few organized long-distance bike rides — Key Largo to Key West, Fla., and New York City to Philadelphia among them — but her approach to training for the much longer upcoming ride is pretty relaxed. She just rides her bike every day, she said. 'I was riding to work before I retired. … I'm just a consistent rider. Whether it's the grocery store, the bank, I just get on my bike and go.' While she was in Lockport before Memorial Day, visiting her mom Elrena and her brothers Dennis Monroe and Larry Monroe, she hit the Erie Canalway Trail and biked to Medina and back, she said. As for the desired fanfare when she returns to Lockport with the Bike the US for MS team, Whitsett said she doesn't know yet exactly where they'll enter (she's hoping it's by Old City Hall) but when she finds out she'll enlist friends and family here to share the location. She has been posting updates at Starpoint's Facebook page as well. Donations and pledges to Whitsett can be made online at and via the QR code placed with this report.
Medscape
3 days ago
- Health
- Medscape
Fast Five Quiz: Multiple Sclerosis and Depression
Depression is among the most common comorbidities of multiple sclerosis (MS), leading to psychological quality-of-life issues that can further exacerbate a patient's functional capacity. The significant burden of depression in patients with MS is typically associated with neuroinflammatory processes which are directly correlated to depression severity. Understanding the relationship between depression and MS is crucial for healthcare providers, to develop effective treatment strategies that address both the neurologic and psychological aspects of the disease. What do you know about the interplay of MS and depression? Check your knowledge with this quick quiz. The prevalence of depression in the general population is approximately 13%, according to the Centers for Disease Control and Prevention (CDC). Other data indicate that it falls between 25% and 54% in patients with MS. Depression, along with other disorders such as anxiety and fatigue, are among the most common comorbidities of MS. These comorbidities further degrade quality of life in patients who are already affected by the functional disabilities caused by the diseases. A multidisciplinary approach can help to holistically manage MS to ensure that quality of life is optimized across specific healthcare needs. Learn more about guidelines for MS. A recent systematic review reported that depression symptoms do not significantly improve after smoking cessation in patients with MS, although these patients do see improvements in anxiety. The same review noted that depression is associated with a 1.3- to 2.3-fold increased prevalence in patients with MS who also smoke tobacco. Although smoking cessation is known to cause short-term mood changes, a recent cross-sectional analysis of the NHANES study found that longer duration of cessation is associated with lower risk for depression. However, the persistence of depression in former smokers with MS might be due to depression's strong association with MS, and clinicians should not assume that depression symptoms will improve when a patient quits smoking. Learn more about tobacco product use and depression. Though depression and anxiety can occur in any subtype of MS, an extensive review and meta-analysis found that both were more prevalent in progressive MS (defined by the researchers as PPMS and SPMS) compared with RRMS. In contrast, the same meta-analysis reported that patients with MS and an Expanded Disability Status Scale (EDSS) score of less than 3 had higher rates of depression compared with patients with an EDSS score of greater than 3, while the prevalence of anxiety was higher in patients with an EDSS score greater than 3 compared with an EDSS score below 3. Proinflammatory cytokines in MS have been shown to disrupt the monoaminergic system, which is a component of the pathogenesis of depression. As such, treatments that enhance monoamine neurotransmission (such as SSRIs, SNRIs, and dopaminergic psychostimulants) are indicated for use in depression and MS-associated depression. Learn more about the pathophysiology of MS. Although comorbid depression in MS often presents similarly to fatigue, several characteristics can help clinicians distinguish between the two and guide appropriate treatment. According to a recent review, patients with depression typically have better functioning in the evening while those with fatigue typically have better functioning in the morning. Other characteristics of depression tend to include hypersomnia and hopelessness; patients with fatigue usually experience insomnia and strong hopefulness for recovery. Learn more about symptom management of depression and fatigue in MS. According to a systematic review and meta-analysis assessing exercise best practices for depression in MS, programs implementing ergometer training protocols had the largest effect size. The data reviewed indicated immediate improvements in depression scores with exercise, and depression symptoms were found to improve regardless of exercise frequency, duration, or activity. This is consistent with another review that cited a range of nonpharmacologic interventions for improving depression in MS, including exercise as well as cognitive-behavioral therapy, yoga, dietary habits, and sleep hygiene. Further, data on Hatha yoga, circuit training at moderate intensity, and resistance training with active rest periods in patients with MS and depression are limited. Learn more about exercise for depression. Editor's Note: This article was created using several editorial tools, including generative AI models, as part of the process. Human review and editing of this content were performed prior to publication.
