226 posts in the category “Multiple Sclerosis”

Staying mobile with assistive walking devices: Member Cathy weighs in

Posted 2 months ago by

Do you have difficulty walking or getting around? Have you considered using a wheelchair, walker or cane? Making the decision to use a walking or mobility aid can be difficult. You’re not alone. Here, PatientsLikeMe member Cathy living with multiple sclerosis shares about how she overcame the fear of losing her independence and how using a cane is helping her “live the kind of life we all deserve.”

When you’re first diagnosed with multiple sclerosis, it’s typical to have questions and concerns that are overwhelming and cause great anxiety. In the age of “fake news,” this anxiety increases when we’re bombarded with television programs that characterize disability as a downward slide. It doesn’t have to be this way. A positive attitude and a bit of determination can help us live the kind of life we all deserve.

One of the greatest fears for many after being diagnosed is if MS will progress to the point of losing our independence. After enjoying a life of self-reliance, the thought of depending on assistive walking devices such as canes, walkers, scooters or wheelchairs is frightening.

I was twenty-eight years old when I was diagnosed. My legs and hands were weak and numb, and my balance was so bad that an ignorant passerby accused me of being drunk. I refused to consider using a cane. I remember taking a walk with my father, his legs twice as long as mine, and trying to keep up with his pace. It was a losing battle. When we crossed the street he threw his long arm out in front of me like a crossing guard, silently knowing how slowly I walked and how long it’d take to cross the street. I’m sure his heart was heavy, and being with him at that moment, my heart was heavy, too.

On accepting a new normal

I was experiencing debilitating MS fatigue, so refusing to use a cane only increased the exhaustion. Later, I learned that favoring a strong leg over a weaker one is not only tiring but also increases the chance of falling and being injured. I had to end my stubbornness for safety’s sake.

I learned that lesson the day I walked through a crowded restaurant and my legs buckled under me. I fell hard on the wooden floor and my friends helped me to my feet. Patrons all around us glared and I was completely mortified. It was at that moment I admitted to needing help.

My friend Abi Budd has a similar story. It took her awhile to come to terms with using a mobility scooter. She struggled with walking and became terrified of her inability to go from one place to another without falling. Her denial was affecting her lifestyle, but her determination and positive attitude led to acceptance; a chair would help her regain the freedom she once knew. She has an infectious attitude.

The same is true for another friend, Debbie Petrina. She doesn’t allow her MS to stop her but embraces the use of assistive walking devices to give her the freedom she desires. “Through the years, assistive devices have allowed me to be less fatigued, elevating my moods and enabling me to do more. I didn’t overheat as fast since I struggled less in trying to walk.”

Learning to accept your new circumstances and relying on assistive devices is a surefire way to live the best life possible. I’m not saying it’s always easy, I’m just saying it’s worth it.

Cathy’s picks: Helpful resources

Do you use a cane or other type of mobility aid? How and when did you make the decision to start using one? Join PatientsLikeMe and share your experience with the community.

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Health news: What’s making headlines in June

Posted 3 months ago by

In case you missed it, check out this round up of some of the stories making headlines in June…

 

Parkinson’s disease:
  • Apple Watch will now be able to monitor PD: Tech developers announced this month that the Apple Watch will now be able to track two common PD symptoms — tremors and dyskinesia — and map them out in graphs to help doctors (and patients) with PD monitoring. Fill me in.
  • Study points to an “overlooked driver” of PD — Bacteriophages: What are bacteriophages or “phages”? Viruses that infect bacteria. New research shows that people with PD may have an overabundance of phages that kill “good” bacteria in the microbiome or gut, which could mean a new target for treating PD. More on the study.
Lupus:
  • How common are cognitive issues with lupus? Very. A doctor specializing in lupus research says nearly 40% of people with SLE have some level of cognitive impairment, such as trouble with attention, recall and concentration — so doctors should monitor it early and often. Read his Q&A.
Lung cancer:
  • Drug may replace chemo as initial treatment for many with NSCLC: New clinical trial results of the immunotherapy drug Keytruda show that it can be a more effective first treatment than chemotherapy for many patients with advanced non-small cell lung cancer (NSCLC) — even those with low levels of the PD-L1 gene mutation. Tell me more.

 

MS:
  • VETS Act expands access to telehealth: Late last month, Congress passed the VETS Act, expanding access to telehealth for more than 20 million veterans, including 30,000 living with MS. Get the full story.
  • Now enrolling: Nationwide clinical trial: Researchers at John’s Hopkins University are seeking newly diagnosed or untreated patients living with relapsing-remitting MS (RRMS) to participate in a study to help inform treatment decisions. Learn more.

 

 

Mental Health:
  • Practices for overcoming trauma: Results from a new study found that women who combined meditation with aerobic exercise had far fewer trauma-related thoughts, and saw an uptick in feelings of self worth. Get the full story
  • When antidepressants won’t work: “I knew it wasn’t going to be a magical Cinderella transformation, but I definitely feel like a newer person.” Read one man’s experience with Transcranial Magnetic Stimulation (TMS) after first-line treatments didn’t work. More info.

 

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