The brain is a vital organ, and like other vital organs, it can be healthy or diseased. Unlike other organs and diseases, the brain and its illnesses remain ambiguous.
There are over 200 forms of dementia. Alzheimer’s disease, the most common form, is a progressive and often terminal disease of the brain causing symptoms that interfere with the ability to carry out daily activities. Over 5.5 million Americans live with Alzheimer’s disease.
Dementias are not exclusive to an aging population. Consider Early-onset Alzheimer’s disease that starts before age 65. Individuals diagnosed with this particular form are often productive, gifted individuals who still earn a living and are socially involved with family and friends. Alzheimer’s and other Dementias do not discriminate in the brains they wreak havoc, and even though each and every one is different, the disease process is notably the same in a person’s decline; those afflicted will present the same disease milestones as the brain and body deteriorate. Though a person would rather not have the disease, an early diagnosis is beneficial in that you can prepare for the inevitable.
Increased awareness and support will help. One way Missouri citizens can show support: vote to expand the state Medicaid program. In theory, the extra billions of dollars in funds will develop evidence-based, good quality-of-life projects that in turn improve Missourians’ overall health outcomes. The impact on state programs like the Structured Family Caregiver Act (signed by Governor Parsons in July 2019) could be major.
The Alzheimer’s Association focuses on research, support and care. Some believe funds should be appropriated to research but the fact is people need help now so the support and care “buckets” should receive a fair share of the fund pie. This is another reason Missouri should opt to expand the Medicaid program; there will be less fighting over where money should be invested.
While the overall goal of the Walk to End Alzheimer’s is to find a cure, Mary Williams, the Lincoln County Walk Manager, realizes resources are needed in rural communities, “Families need to know what journey that they’re on and that the Alzheimer’s Association has a lot of services that are free. So my goal this year is to bring that awareness to all of Lincoln County.”
Initially a research project for work, Williams volunteered with the Alzheimer’s Association to better serve her patient and family population and grasp what the disease process was like. “I ran a private duty, Medicaid/Medicare, staffing agency and so I needed to understand what my families were going through, and where do you send them. I didn’t know anything about it.” Williams claimed. That was over twenty years ago.
Williams also has personal connections to the cause. One being her grandmother, who resided in California and suffered from Alzheimer’s. Luckily, Williams’ sister moved in with their grandmother prior to her diagnosis in 1990 and was able to be her caregiver. Williams visited on weekends, with her daughter, and began mini-vacation traditions to visit her family (and the beach).
It was when Williams realized her grandmother would not help herself that she decided to reach out for help so she called the Alzheimer’s Association. “She did not want to pick up that phone—nobody does,” Williams shared. It was the only thing she felt she could do at the time especially from far way.
Another thing to carry with you in your journey is humor. Williams recalled one visit with her demented grandmother, “she pointed at my sister and whispered, ‘that lady’s here every day and I don’t know her.’” Her grandmother would call Williams, Rosemary, which is her mother’s name. The rule is simple in cases like this: play along and never argue.
If you or your family needs help please do not wait. Williams provided two phone numbers: 1-800-272-3900 is a helpline open 24/7. Also available to anyone in need is Williams’ phone number: 314-280-1617; she shared, “Don’t walk this journey alone. I don’t want anyone to walk it alone.”
The Lincoln County Walk to End Alzheimer’s is Saturday, Oct. 10. This is a free public event.