KosAbility holds our monthly gathering on the last Sunday of every month — 12/27, this month — at 4pm Pacific/7pm Eastern. All are welcome. This is an open thread.
I found a concerning article about people being diagnosed with forms of dementia… I hope some can read the whole article, though WAPO has a paywall. I’ve had concerns about my focus and my memory recently, though I’m really hoping it’s due to the Orange Virus, and that my mental health will improve mid-January.
www.washingtonpost.com/…
Atypical forms of dementia are being diagnosed more often in people in their 50s and 60s
…The old Ted somehow morphed into a new guy, one who is not so communicative. A guy who lost his social edge and seemed unable to read faces or feelings. Who is tired and withdrawn. “He’s just not the same guy,” she says. “I want him back.”
..Ted can still do some of the things he has done for decades. Until a few years ago, he was the president at a construction company. Lately, he’ll see someone he is supposed to know but forgets who they are. He sleeps a lot. And he can’t be left alone for too long or his wife may find him trying to eat a battery or a hammer. He’s agitated. He’s always putting things in his mouth.
…Ted Prewitt, who has behavioral variant frontotemporal dementia (bvFTD), is one of a growing numbe rof people in midlife diagnosed with an atypical form of dementia. Unlike Alzheimer’s, which generally occurs in older people, these are rarer dementias— including bvFTD; another frontotemporal variant that leads to language disturbances called primary progressive aphasia; a visual and spatial dementia called posterior cortical atrophy; Lewy body dementia; and early-onset Alzheimer’s in people with no family history.
...No treatments are available to slow or stop the progression of these diseases. The few drugs that treat symptoms associated with Alzheimer’s are often prescribed for people with these rarer forms of dementia.The drugs may help with some of the symptoms.
The National Institute on Aging suspects that these early-onset dementia cases represent about 5 percent of the total number of Alzheimer’s patients. There is growing interest in studying these atypical forms of dementia to understand why they affect people much earlier in life than the more common Alzheimer’s, and whether there is a way to target the pathology and slow the disease’s progression.
“There is still limited awareness about early-onset dementias. When people come in with cognitive complaints in their 40s or 50s,nobody believes them. We are trying to improve our understanding of the risk factors and various disease presentations, and raise awareness about it,” said Liana G. Apostolova, a professor of neurology, radiology, and medical and molecular genetics at Indiana University School of Medicine and the Indiana Alzheimer’s Disease Research Center.
Apostolova is a co-principal investigator of the Longitudinal Early-Onset Alzheimer’s Disease Study (LEADS), a multicenter observational trial enrolling 500 cognitively-impaired people between ages 40 and 64 with early-onset dementia due to Alzheimer’s. The investigators are conducting annual clinical and cognitive assessments, imaging, biomarker, and genetic studies. They hope to define patients and characterize their symptoms and rate of disease progression, and then enroll them into clinical trials.
Apostolova and colleagues published a study in August that looked at dementia in people under 65 and found that they have more brain pathology than those diagnosed later in life. Since the availability of biomarkers to identify the pathological changes — brain scans, blood and cerebrospinal fluid tests — it has become clear that the earlier onset of the disease, the more severe the cognitive decline.
This is the link to the group:
leads-study.medicine.iu.edu
The Longitudinal Early-onset AD Study (LEADS) is funded by the National Institute on Aging (NIA) to address several major gaps in Alzheimer’s disease and related dementias research. LEADS is an observational study that will enroll and follow 500 cognitively impaired participants and 100 cognitively normal participants ages 40-64 years at approximately 15 sites in the United States. Clinical, cognitive, imaging, biomarker, and genetic characteristics will be assessed. The primary goal of LEADS is to develop sensitive clinical and biomarker measures for future clinical and research use. Learn More. Join the Fight.
This is that study link:
alzres.biomedcentral.com/…
Neurodegenerative changes in early- and late-onset cognitive impairment with and without brain amyloidosis
This last snippet is more upbeat; it’s wonderful to find everyday heroes, like this group who are helping those with disabilities to enjoy computer games.
We utilize fun to bring inclusion and improved quality of life for people with disabilities through the power of video games.
With a combination of technologies such as mouth controllers, eye gaze, and special customized controllers, we find a way for people to play video games no matter their disability. When our accessibility experts give assessments to determine the right set of equipment for each individual, we’re using the latest, leading-edge technology to bridge the gap between ability and desire.
…. Every disability is different. If there are 10 people in the room with the same disability, around the same age, you’ll find a slight to moderate difference in the abilities of each person. That’s why there is no cookie-cutter formula to helping people get back into the game. We take the time to talk to each individual, find out their specific needs and wants, their abilities and challenges, and projected prognosis, to determine the exact equipment needed to make gaming a possibility for everyone, no matter the obstacles in their way.
We’ve modified regular controllers, built entire gaming setups, used eye-tracking in new ways, invented new techniques, and even built entire rooms specifically for people in need. We don’t sell anything here. Everything you see on this website and the technologies we recommend are all specifically tailored to each individual. AbleGamers doesn’t get anything from insurance companies or third-party sellers, so you’re guaranteed to get the best solution we can give, every time.
...Reach out if you’re having trouble gaming due to a disability. We’ve never met someone with a disability we couldn’t help.