Dear Friends,
The stakes have never been higher for local non-profits seeking to sustain their operations and fund their mission-critical programs and services beyond 2020. So, when Piedmont Moving Systems in Silicon Valley stepped up to help with a donation of $25,000 in support of people living with ALS, it was a met with joy from all of us at the Greater Sacramento Chapter who serve on the front lines helping families navigate the disease every day.
A new partner like Piedmont Moving Systems offers so much hope to people living with ALS. Their strategic investment into local services will have a lasting impact on the chapter's ability to operate and execute wide-ranging programming moving forward.
The company has served the Silicon Valley with comprehensive moving services tailored to the unique needs of local businesses for 39 years. Their values of providing the highest degree of customer service to their clients echos the commitment our team makes daily to people living with ALS, making this a synergistic partnership.
Their generous contribution will be used to support the chapter’s core services, such as, support group meetings, loaned durable medical equipment, and augmentative speech communication devices, while giving us the flexibility to support the emergency relief needs people with ALS are facing as a result of the pandemic.
On behalf of the team in Sacramento and the families we serve, our hats go off to Piedmont Moving Systems for their generosity and kindness.
Warmly,
Amy
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In honor of National Family Caregivers Month, Linda Hays shares her unique perspective on caregiving for a loved one living with ALS. Linda cared for her brother Joe, who lost his battle with ALS in 2009. Sadly, 10 years later, Linda's husband Dave was also diagnosed with ALS. With no familial connection to Joe outside of marriage, Dave's diagnosis came a shock to Linda and their family. She was again thrust into the role of caregiver and serves that role with her signature grace and kindness. |
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1. What are your initial thoughts about what it’s like to be a caregiver for someone living with ALS?
Being a caregiver is very hard both physically and mentally. It is so hard watching your loved ones die a little each day. Each day I have to put aside my feelings and do my "job". I have far too much experience!
2. What is a piece of advice that you wish you would have known as a first time caregiver?
A first time caregiver needs to learn how to separate feelings and make caregiving their job. Critical needs…get your equipment early. Get the wheelchair, hoyer lift, shower seat, grab bars, ramps... even if they just sit in the garage until the day you need them.
3. How did your experience with your brother shape your ALS caregiving journey with David?
Taking care of Joe was much easier than taking care of Dave. I had Dave to help care for Joe and he has always been my rock. I have no rock now. Dave also as dementia which makes him stubborn at times. He has forgotten how to do simple things. He has not forgotten people or places, just how to do things at this point.
I had a lot of helpers taking care of Joe and I was 12 years younger. In my 70’s and losing my partner of 53 years is much more difficult than I ever imagined. We have been together since we were 16. Joe was only 41 when ALS took him, at least Dave and I have had a long and happy life. I just have to take it one day at a time.
4. Do you struggle with prioritizing your own needs as a caregiver? How do you practice self-care?
Prioritizing isn’t easy as your loved one's needs come first. As a caregiver, you need to plan ahead to take time for yourself, even if you have to ask. Friends and family usually can give you some time for yourself. You have to learn how to not feel guilty when leaving and enjoying yourself. That is the hardest thing for me to do. I hate leaving Dave, even for just an afternoon.
5. What are some resources that have helped you as a caregiver?
The chapter has been a great help all these years. Just having the support of everyone makes this journey easier.
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Thank you for everything you do Linda, as a caregiver, friend, and kind shoulder to lean on (especially during support groups). Your dedication to your role is evident in everything you do and you epitomize what it means to be a family caregiver. |
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Giving Goes Global on Tuesday, December 1st |
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Mark your calendars! On Tuesday, December 1st, people around the world will stand together in unity for a global day of giving, Giving Tuesday. For 24 hours, individuals from communities across the globe will use the power of generosity to connect and heal. You can help people impacted by ALS by donating or creating a Facebook fundraiser for The ALS Association Greater Sacramento Chapter. Stay tuned for more Giving Tuesday good vibes by following us on Facebook! |
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Join Us in the Celebration of ALS Caregivers Everywhere |
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November 1st marked the beginning of National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. Caregiving for someone with ALS has a broad and lasting impact, in both daily life and long-term well-being. |
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AMX0035 Survivability Data Adds to Urgency to Make Drug Available |
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Clinical trial participants who took AMX0035, a promising new drug therapy developed by Amylyx, showed a statistically significant 6.5 month increase in survivability compared to participants who did not receive the drug in the initial trial, according to data published in the journal Muscle and Nerve in October 2020. These findings validate calls led by The ALS Association and I AM ALS for Amylyx and the FDA to make AMX0035 available as quickly as possible. |
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Maximize Your Charitable Deductions with the CARES Act |
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Recently, the Coronavirus Aid, Relief, and Economic Security Act (CARES Act) was enacted, providing extensive relief for individuals, businesses, medical centers and nonprofits. Some provisions of the CARES Act facilitate charitable giving to protect nonprofits such as The ALS Association, which provide critical programs and services to vulnerable populations. Read on to learn how to maximize your charitable deductions before year end. |
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Medicare open enrollment began October 15th, the period of time when individuals may add, drop, or make changes to their health insurance coverage, with selections remaining in effect for the next full year. The decisions you make during this period are critical, and you deserve to understand exactly what’s available. |
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Why We Can’t Wait To Find A Cure |
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I was diagnosed with ALS in 2017. It took several years for my doctors to confirm I had the disease. Yet that slow process still didn’t fully prepare me for the day I heard the news. The truth is, I don’t know when I’ll lose the ability to do the small things I used to take for granted. I don’t know if or when the day will come that I’ll be unable to tell my family just how much I love them. |
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COVID-19
Frequently Asked Questions
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The ALS Association has compiled a list of Frequently Asked Questions about living with ALS and the potential risks of contracting COVID-19. Click here to read responses from our professional medical and care services team.
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