Dr. Heidi Tarr Henson, a Massachusetts woman recently diagnosed with ALS, shares her reflection on how to handle life with ALS and end of life discussions.
I can’t will the leaves to hold on to the tree for much longer, I know that. Soon, we will all have to let go. But for now, in the month of Thanksgiving, we just hang on. We continue to thank God for the gift of time and each other. But when the day comes and her spirit no longer fills that room, I surely will never be the same.
The Allied Professionals Forum is almost here - an educational and training event where hundreds of allied health professionals come together from around the world. Its two days of extensive presentations, networking, and workshops that always leaves us feeling exhausted but at the same time re-energized and rejuvenated from hearing about all the amazing work being done around the world.
My husband's ALS diagnosis didn’t explain the symptoms I was seeing. I searched the internet late at night and concluded that he also had Frontotemporal Dementia (FTD). Symptoms of FTD include a loss of empathy and executive function, an increase in inappropriate actions, a lack of judgement and inhibition.
The Association provides free online access to a variety of options, including publications, videos, books, and informative websites that provide a wealth of easy-to-access information on important topics relevant for people living with ALS and their caregivers.
Executive Director John Hedstrom of The ALS Association Massachusetts Chapter offers a testimony to the Join Committee on Health Care Financing in support of in Support of H. 201 and S. 753, “An Act Advancing Health Care Research and Decision-Making Centered on Patients and People with Disabilities”. Read his statement on behalf of the Massachusetts ALS community here.
Accelerating Access to Critical Therapies (ACT) for ALS (H.R. 3537) was approved by a unanimous vote on Thursday, November 4 in the House Energy and Commerce Subcommittee on Health. Thanks to everyone within the ALS community who has advocated for passage and who has worked on Capitol Hill to help make this important step happen. The strong bipartisan support for this bill means smooth sailing as the bill goes to the full House Energy and Commerce Committee and then the full House for approval.
Only those living through the experience first-hand truly understand the challenges of being a full-time caregiver, particularly for someone living with ALS. The ability to complete basic daily tasks can be overwhelming and the need for help is great.
Avi works closely with The ALS Association, fundraising to ensure all people living with ALS have access to effective treatments and care. Almost completely paralyzed and unable to speak, he communicates by typing using small head movements. “My campaign to help find treatments and a cure is done primarily through a computer,” he says, “but my life is filled with joy, and I am living with ALS.”
The impact of ALS on breathing is likely one of the most daunting aspects of the disease journey and one for which you and your family can and should prepare for early on. There are many different options and interventions to consider, and education and proactive planning can help to ease the stress for everyone involved.