About Randy’s Diagnoses
Bulbar-onset amyotrophic lateral sclerosis (ALS)
A progressive, incurable, and fatal disease
The average life expectancy of people with ALS is 1.5 - 2 years from diagnosis
It expresses itself differently in each person
It is more commonly known for starting out in the limbs; however, Randy’s type has started out by affecting his speech, swallowing, and cognitive functions.
Frontotemporal dementia (FTD), commonly associated with ALS
A type of dementia that affects Randy's decision-making, emotional control, memory, and social behaviors.
More common with bulbar-onset ALS
Health & Safety
If you are feeling unwell, particularly with cold or flu symptoms, it is crucial that you inform us and reschedule your visit until you are fully recovered. Due to Randy’s ALS, he has an increased risk of respiratory complications, so even minor infections like colds can pose a significant risk.
Bulbar-onset ALS weakens the nerves that control things like swallowing and maintaining airway clearance.
Randy coughs or even chokes when eating or drinking—do not be alarmed. This is his way of clearing foods and liquids from his windpipe, and it happens frequently.
He also experiences more intense choking episodes where his airway temporarily closes, and sometimes involves the involuntary expulsion of liquids or food from his nose or mouth. While this is distressing to witness, there’s nothing visitors can do at the moment except to help him feel at ease and allow him time to recover. These moments are a normal part of his condition, and your calm presence will help him feel more comfortable.
The best way to prevent choking is mindfulness while eating. During meals, please wait until he has swallowed his food or drink, or stopped coughing, before asking him questions. Please help us encourage him to sit down to eat at the round table, so that he isn’t multitasking (like watching TV or puzzling) while dining.
If you are doing physical activities together, please keep an eye out for signs of fatigue such as slowing down or heavy breathing, and suggest you take breaks as needed. ALS often leads to rapid fatigue and reduced stamina, so one of his primary goals is to conserve energy.
Randy’s doctors have advised that he should not drive. For his safety and the safety of others, please offer to drive or arrange for someone else to drive when outings are planned.
Behavioral Changes
Language and Memory: FTD with Bulbar ALS affects Randy’s ability to process language and short-term memory, but it doesn’t diminish his intelligence. He remains a deeply thoughtful and capable person, even if it takes him longer to respond or recall. Please be extra patient, as Randy may not remember previous answers or conversations. If he repeats a previous question, try to answer as though it is the first time he has asked.
Stubbornness and Impulsivity: FTD can sometimes affect Randy’s ability to adapt or shift focus, leading to moments where he may get fixated on something that is not helpful or even harmful to him. Here are some approaches that can help:
Redirection: After validating his emotions, gently guide him toward something enjoyable or calming, like puzzles or taking a walk around the lake.
Limit Choices: Too many options can overwhelm him and exacerbate fixative behavior. Simple, clear choices or structured decisions, like “Would you like to do X or Y?” can make things more manageable and help him feel in control.
Communication & Connection
ALS has significantly affected Randy's ability to speak, and while he often tries to communicate verbally, his speech is no longer understandable most of the time. Randy now uses a text-to-speech app called “Speech Assistant AAC” on his phone to help communicate verbally.
Please help us encourage him to use his Speech app to communicate. We want to make sure that we know what he is thinking and feeling, and that he feels free to express himself, so we are trying to encourage him to reach for it and normalize its use.
Be patient and allow him extra time to express himself, especially during group conversations. Please wait for him to type out his responses before asking him or another question. Also, try not to continue the conversation with other people while he is typing so that he doesn’t get left behind. We want to make sure he feels included.
Randy loves hearing from friends directly and can use his Speech app when you call his phone. After he picks up, remind him that he can use his Speech app to talk with you, and just be patient as he types his replies. He also enjoys listening to stories about your life and loved ones!
Randy is still a shutterbug and loves showing off photos/videos on his phone, both in person and via text. Asking him to show you photos of what he’s been up to lately is a great way to engage with him.
Randy’s favorite cognitive exercise is putting together jigsaw puzzles. He likes doing small wooden puzzles on his own, but he loves doing bigger 1,000 piece puzzles with other people.
He finds it helpful when people help him collect all the edge pieces for him to put together, or sort the puzzle pieces by color/pattern.
Sometimes his FTD affects his executive functioning skills and he can get overwhelmed. But if you help him get things started and break things down into smaller, more manageable sections (like by sorting things into colors for him), he can put together really difficult patterns.
If he gets stuck, offer to switch sections with him, or offer him pieces that you know go in all the same section.
He loves to listen to Pandora stations while puzzling and hums along. Suggesting that will bring an eager smile to his face.
With the larger puzzles, he likes to solve side-by-side, but he often likes to put in the last 30-ish pieces on his own. However, he loves having witnesses nearby when he puts in the very last piece. :)
Thank you for helping us care for Randy—your calls, texts, and visits truly bring him so much joy! 💖