Daily Living
Take Falls Seriously to Prevent Further Injuries
There was a period of time last year when Ira Anderson was "falling ridiculously all over the place." Reluctantly, he agreed to get a cane and found one with an ornate carved metal handle "that matched my personality."Unfortunately, the cane made a better fashion accessory than a fall-prevention device. An uneven surface or misjudged step still put Anderson on the ground.
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All Choked Up
It’s not uncommon in ALS for something unexpectedly and abruptly to aggravate your airway and throw you into a choking fit. I know from personal experience that these choking, gagging, gasping spells are physically exhausting, frustrating and upsetting for both the choker and the caregiver.The actions to take for choking depend on the type of choking spell you’re having. For example:
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Talking to Your Kids About ALS
Aimee Chamernik, 37, of Grayslake, Ill., and (from left) sons Nick, 9; Zachary, 3; husband Jim and daughter Emily, 7. Chamernik writes about talking with her children about ALS. As we huddle on the couch, munching popcorn and engrossed in our movie, the kids and I are startled by a sharp knock at the door. Before I can shift forward to start the painstaking process of standing up, our neighbors burst into our house.
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Helping Hands
"It is one of the most beautiful compensations of life that no man can sincerely try to help another without helping himself." — Ralph Waldo Emerson Caring for someone with ALS may be one of the most difficult things a person will ever do. The physical and emotional demands caregivers face can be brutal, and often may seem insurmountable.
Read MoreIn the Market for New Wheels?
Accessible public transit, such as taxis and buses with adaptive equipment, unfortunately cannot always be relied on to show up when needed, even in urban areas. That means personal acquisition of an adapted vehicle becomes a serious consideration for people using wheelchairs.Adapted vehicles come in a bewildering variety of shapes, sizes, configurations, capabilities and price ranges. Where to begin the selection process? Some basic issues need to be addressed.
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Tips for Tackling Depression
A bout of depression can bring added difficulty to a life already complicated by ALS. To keep depression from bringing you down, check out these 10 tips — culled from a variety of expert sources — for understanding, spotting and stopping it.1.) A common misconception about depression in people with terminal illness is that in such situations depression is “understandable” or “normal” and nothing to worry about. In fact, studies have shown that most people with late-stage ALS aren’t depressed. Identifying and treating depression, rather than accepting it as “normal,” can have a tremendous positive effect on quality of life.
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Tips for Coping with Summer’s Heat
Summer typically is the time when people head out and enjoy the great outdoors. But people with ALS have to take a few extra precautions during these hot months, warns Lora L. Clawson, certified registered nurse practitioner and director of ALS clinical services at the MDA/ALS Center at Johns Hopkins University in Baltimore.
Read MoreBaby, It’s Cold Outside!
When it comes to cold weather and ALS, 53-year-old Pati Milewski, of Olympia, Wash., likens her experience to that of “a house with no thermostat.”Although inability to regulate body temperature isn’t recognized as a classic symptom of ALS, decreased mobility limits the ability to stay warm by being active.
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Role Reversal: When Children Care for a Parent with ALS
In Sandstone, Minn., Alea, 16, and Alexandra, 13, have added “caregiver” to the long list of roles they assume in life, including daughter, sister, friend, teenager and student. The girls’ father, William Anderson, learned he had ALS on March 26, one day after his 49th birthday.To date, Anderson’s symptoms include weakness and lack of coordination in his hands, arms, shoulders, chest and back. He retired from his job as a corrections officer with the state of Minnesota due to the progression of his symptoms, but still serves as a volunteer with, and president of, the Pine County Sheriff’s Department, planning meetings and events. He uses braces to preserve strength in his wrists, but even so has trouble managing forks and spoons, getting dressed, handling tools such as hammers and wrenches, cooking and folding clothes.
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Not Gloom and Doom: Demystifying Hospice
For some, “hospice” is a vague idea whose connection to death leads to outright rejection before the true facts are known.In fact, hospice neither prolongs life nor hastens death. Instead, it offers practical care and support at a difficult and sometimes traumatic time.“People should think about hospice as a comfort measure, not gloom and doom,” says Janet Neigh, executive director of the Hospice Association of America (HAA). “There’s a misconception that hospice is a place. It’s actually a concept, an approach to care for people who have a terminal illness.”
Read MoreMDA Resource Center: We’re Here For You
Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.
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