Jean Norris-Wilhelm has led a happy life.
She has been a successful Math teacher with over twenty years of experience.
She is a mother and has a good marriage with her wife Kathy.
Together, they like to garden, hike, camp, entertain friends, and get involved in civic affairs.
Unfortunately, Jean, who is now 58, was diagnosed, after a series of several medical tests, with Early Onset Alzheimer’s Disease in 2016.
This has caused many adjustments in her and her wife’s lives.
Because Alzheimer’s affects cognitive function, Jean has difficulty:
- Following conversations in social settings.
- Identifying household appliances like the television remote control.
- Remembering how she and her wife, Kathy met.
- Performing daily tasks and normal functions.
Because of the disease, Jean was forced to retire from teaching after 20 years.
She has to take Zoloft, Donepezil, Memantine, and SUVN-502 (a clinical drug) to address the increasing levels of anxiety and dementia.
Fortunately, she was able to transition, fairly easily, from her health insurance at the Chandler Unified School District to COBRA to the Obamacare Marketplaces to Medicare.
Unfortunately, despite being enrolled in Medicare and Aetna (a supplemental plan,) Jean and Kathy face many financial obstacles. These include:
- A loss of income when Jean had to retire.
- The out of pocket costs of the above-mentioned prescription drugs to mitigate the effects of the Alzheimer’s.
- The expense of medical tests (two MRI’s, a Psych Scan, an EEG, and a PET Scan) to diagnose the disease. This proved more problematic in Jean’s case because Early Onset Alzheimer’s is rare (only five percent of the cases in the United States) and it took longer for the medical specialists to come to a diagnosis because they looked, given her age, for a different cause for her condition.
- The cost of Long Term Care. Long Term Care Insurance is available to purchase but most people, because of the cost and the likelihood of needing it, do not choose to obtain it. With Jean’s condition, the need for Long Term Care (which includes home nursing) will be essential in several years if not sooner. Unfortunately, Jean and Kathy cannot get any because it is extremely cost prohibitive and preexisting protections do not include providing long term care.
Jean and Kathy have chosen not to withdraw from life in the face of this adversity. To their credit, they are meeting the challenge and still do the same things they enjoy to do in their lives. They have even added going to the malls with friends and walking around to lose weight and maintain a healthy lifestyle as they have adopted.
They have also become tireless health care advocates, appearing and participating at panels and events that call attention to:
- The plight of people with Early Onset Alzheimer’s. Kathy praises Banner Health for hosting workshops on Early Onsets that increases awareness of the disease.
- The importance for everyone that exhibits symptoms (especially in their 40’s and 50’s) to get tested and then, if diagnosed with the condition, treatment that will make the situation better and “extend the quality of life.”
- Obtain affordable Long Term Care Insurance, which includes nursing.
- Reducing the out of pocket costs of prescriptions.
In meeting with Kathy, she says that Jean and her:
“Are the eternal optimists. We have joy every day. We extract the most joy out of every day. We choose to make the most out of everything.”
Jean and Kathy Norris-Wilhelm are examples of how most people should confront adversity when thrust upon them. While difficult, they have decided to take a proactive approach in combatting Early Onsets Alzheimer’s and expanding awareness on it and its ramifications to the surrounding community while also living and enjoying life.
Americans need to be aware that if they or a loved one is exhibiting signs of cognitive deterioration, to ask a Doctor to test for all possible causes, including Alzheimer’s.
People also need to be aware that not having a genetic predisposition to Alzheimer’s is no guarantee that they will not get it. “Everyone with a brain is at risk for developing Alzheimer’s disease.”
People also need to watch for over the counter drugs they take while being tested. Benadryl has been found to worsen dementia and those who suffer from Alzheimer’s.
Jean and Kathy’s situation also serves as a message to the country as a whole. Our public servants should endeavor to further reform health care by:
- Having the government negotiating for cheaper drug prices with the Pharmaceutical companies.
- Providing options for affordable high-quality long term insurance that includes home nursing. This should be at the very least included for all people that have a pre-existing condition.
The United States Health Care System has a lot of benefits to it and it would not take much to build on the considerable foundation put forth by Medicare, Medicaid, Employer-Sponsored Plans, and the Affordable Care Act (Obamacare) to fill in the gaps and ensure that all people, like Jean, receive the quality and affordable health care she deserves.