Earlier this year our mother, Barbara, was diagnosed with uncurable terminal illness, Amyotrophic Lateral Sclerosis (ALS). If you know us and the love we have for this amazing woman, then you know how devastating this news has been. Her email is Mom2awl and it is the perfect description of this caring woman. In addition to raising her own brood, and adopting two others, she was also a foster mother for more than 20 years taking care of over 80 children. Her heart has always been that of a caretaker. Whether it’s food, advice, a hug, some ibuprofen or a good laugh, Mom always has the remedy and gives it all selflessly, always placing others before herself. Well, in light of her diagnosis we wanted to keep everyone posted on how she is doing and give everyone an opportunity to help. It’s time to take care of our care taker.
WHAT IS ALS?
If you remember or participated in the ice bucket challenge, ALS, commonly known as Lou Gehrig’s Disease is what the fund raising and awareness was for. ALS is a disease that affects your motor neurons, the things responsible for telling your muscles to move. It can affect every muscle in the body meaning everything from writing, lifting, walking, speaking, swallowing and breathing will degrade as your muscles waste away until these functions become impossible. At this point there is no cure and no known cause. There are currently only two FDA approved drugs that can slow the diseases progression by a very small percentage, but no way at this point, to stop it completely.
Approximately three years ago, mom noticed a weakness in her left thumb and pointer finger (her dominant hand) and an over-all nerve sensitivity that made her skin hyper sensitive and achy, and a general fatigue that made it difficult for her to stay active during the day. After many months and several tests, she received a diagnosis of Fibromyalgia, which explained the nerve sensitivity however the doctors could not explain the muscle weakness that at this point had started to affect her entire left hand. In February of 2018 she was referred to specialists at Johns Hopkins and after a test where they listen to your muscle electric activity was given the diagnosis of ALS. Since her diagnosis, as her limbs have grown weaker, she has had two falls. She fell in February breaking her finger, which thankfully healed quickly.
In her most recent fall she broke her right wrist (the one less affected by ALS) leaving her, in her words, helplessly handless. It was a big wake up call for all of us as she, at this point, has little to no use of either hand. Thankfully this brace will come off in a few weeks and with physical therapy, she should be able to regain some use of her right hand for a while longer.
LOOKING TO THE FUTURE
We are trying to soak in these precious moments now while mom still has speech and mobility, but we know we must also prepare for the future.
We knew after meeting with her team of doctors, mom would eventually need to live on one level of the house because stairs would become an impossibility. Her most recent fall and increased weakness in her legs has made that eventuality an immediate need. Making living on the first floor possible, requires a complete re-model of the bathroom so the shower is roll-in ready and the toilet and sink are handicap accessible as well. Thankfully very dear friends of the family have volunteered their time and expertise but we will still need to cover the cost of materials, a plumber, tiler and electrician. We will also need to make adjustments in the kitchen, and the space downstairs that will become her bedroom. We are sincerely grateful to each of you for your prayers, encouragement and support.
If you’re interested in following Mom’s story we’re planning to keep this page updated as needed.
Many people have asked us to share Mom's address. If you'd like to send something to her we've put her mailing address below.
7565 Middleburg Road
Detour, MD 21757
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