At PatientsLikeMe, we know that living with a neurological condition can be overwhelming, not just for the person experiencing it, but for families and caregivers too. That’s why we’re excited to partner with Synapticure, a virtual neurology clinic that’s transforming the way people get care. Why Synapticure Exists Synapticure was started by Sandra Abrevaya and… Continue reading Helping You Get the Neurological Care You Need from Home with Synapticure
Category: ALS
When to Consider Genetic Counseling in Your ALS Journey
Living with ALS involves making many important decisions about care, treatment, and planning for the future. One crucial decision that often arises is when to pursue genetic counseling. Understanding the right timing for genetic counseling can make a significant difference in your journey with ALS. Key Moments to Consider Genetic Counseling At Initial Diagnosis When… Continue reading When to Consider Genetic Counseling in Your ALS Journey
What Genetic Testing for ALS Can (and Cannot) Tell You
Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, leading to loss of muscle control over time. It is a profoundly life-changing diagnosis, not only for those living with the disease but also for their loved ones. For many, grappling with the uncertainty of what… Continue reading What Genetic Testing for ALS Can (and Cannot) Tell You
What’s Positive About Disease?
It may seem counterintuitive, but according to some of our members, there are actually some good things that can come out of being diagnosed with a serious illness. In the spirit of Thanksgiving – a time when many people are reminded of all the things they have to be grateful for – we thought we… Continue reading What’s Positive About Disease?
How Virtual Reality is Transforming ALS Treatment
In an incredible leap for medical technology, a 64-year-old named Mark with amyotrophic lateral sclerosis (ALS), has become the first patient to use the Apple Vision Pro headset through an implantable brain-computer interface (BCI). This highlights the potential of BCIs in treating neurodegenerative diseases like ALS. It also opens up new possibilities for enhancing the… Continue reading How Virtual Reality is Transforming ALS Treatment
Hints and Ideas for Those with ALS or Mobility Issues and Their Caregivers
Written by Leigh Ann Nielson, PLM Member My name is Leigh Ann Nielson and I was diagnosed with ALS/Lou Gehrig’s Disease on November 27, 2019. It has been quite a journey. I am not a doctor, nor do I advocate for not following your doctor’s advice. That said, you have choices. Be sure your medical… Continue reading Hints and Ideas for Those with ALS or Mobility Issues and Their Caregivers
A Guide for Safe Holiday Travel with Chronic Illnesses
The holiday season brings a mix of joy and stress, especially for those with chronic illnesses worried about safe holiday travel. Navigating the complexities of managing health while enjoying the festivities requires careful planning and consideration. By understanding your unique health needs and taking proactive measures, you can make holiday travel not only manageable but… Continue reading A Guide for Safe Holiday Travel with Chronic Illnesses
Risk Factors for ALS
Once considered a rare disease, amyotrophic lateral sclerosis (ALS) has become a common condition. About 6,000 new cases of ALS are diagnosed each year, and approximately four to six people per every 100,000 are living with the disease. Also called Lou Gehrig’s disease, it’s a progressive illness that affects nerve cells in the brain and… Continue reading Risk Factors for ALS
How to Adapt Your Living Space and Daily Activities for ALS
Your home is your sanctuary, but if you’ve recently been diagnosed with amyotrophic lateral sclerosis (ALS), it may feel like that sanctuary isn’t as safe as it used to be. As the illness progresses, it can become harder to move around your home and do the daily tasks you used to do. Because ALS is a… Continue reading How to Adapt Your Living Space and Daily Activities for ALS
Circulation issues & ALS
Do you have circulation issues like swelling (also called edema) or a burning (or cold) sensation in your legs and feet? How do you cope? From compression stockings to therapeutic massage and limiting salt intake, PatientLikeMe ALS members are managing their circulation issues in some creative ways. Why do some people with ALS experience poor circulation?… Continue reading Circulation issues & ALS