Jeannette Lyne Ekstrand FTD - ALS

This campaign is to support Jeannette Lyne Ekstrand and her family through two horrible diseases - Frontotemporal Degeneration, or FTD and amyotrophic lateral sclerosis or ALS. Jeannette was diagnosed with FTD and early stage ALS in Feb 2018. FTD is a disease that results in continuous damage to the frontal lobes of the brain. The frontal lobe allows us to make every-day decisions, plans and communication. FTD is a type of dementia where more than half the cases occur in people 45-64 years old. Jeannette is 51.

ALS is also a progressive neurodegenerative disease that affects nerve cells in the brain and spine, which leads to muscle wasting. Jeannette has a genetic disorder that can result in either or both FTD and ALS.

Jeannette is a loving mom to 3 great kids and a wife to Doug, her wonderful devoted husband. As friends and family know, she is the twin of a sister who was afflicted with the same two diseases. Jeannette is also a person of strong faith. She has looked to her faith to guide her through her sister’s disease. Her faith gives her strength every day as she confronts this disease.

Jeannette has worked most of her adult life but with the progression of FTD the ability to communicate with people makes social interaction incredibly difficult. The main trait for the form of FTD that Jeannette has is the ongoing loss in one’s ability to moderate behavior in different social situations. Not only does FTD create an incredible strain on personal relationships it can be devastating to the financial state of a family living with it.

This campaign was created to support Jeannette and her family through all the things that insurance does not cover: out-of-pocket medical expenses; direct care and comfort; travel to participate in FTD/ALS medical research; and family counseling. Our initial goal is $37,000. We have focused on the FTD since that is a more immediate concern. We will certainly provide updates as things change. The following breaks down expected costs for now.

·         Out-of-pocket medical expenses. While health insurance will cover some costs, treating a degenerative neurological disease requires a lot of medical intervention and physical therapy. We are anticipating out of pocket costs to be several $1000s during the course of the disease. Initial goal for out-of pocket expenses are $5000.

·         Direct care, comfort and other accommodations (in excess of insurance coverage). Due to the progression of the disease and the challenges associated with behavioral variant FTD, Jeannette will require significant direct, personal, one-on-one companion care, ultimately potentially requiring 24/7 long-term care. While Jeannette does have a long-term care policy, it will not meet 100 percent of the expenses due to the additional care needs associated with FTD.  Some of the anticipated direct care will not fall under the long-term care policy at all but will be necessary to support Jeannette in a safe and comfortable environment. The behavioral changes caused by FTD lead to a lack of awareness that can put a patient in great personal risk. We also anticipate out of pocket expenses related to the comfort and accessibility needs for Jeannette. These needs could include adaptive medical devices, massage and other therapies, and modifications to her physical environment. Initial goal for direct care, comfort and accommodations are $20,000. We expect the need for direct care to start very soon, sometime this spring 2018.

·         Research travel expenses. The scientific and medical study of frontotemporal degeneration and its eventual cure is important to the family. Everyday new discoveries are being made. Participation in research and clinical trials are leading to all kinds of insights into this disease. Jeannette, like her sister, is participating in FTD research in the hopes that someday there will be a cure for this horrible disease. This research is incredibly beneficial to the advancement of knowledge concerning the understanding and eventual treatment of FTD and related neurological disorders like ALS (Lou Gehrig’s disease). Initial goal for research travel expenses is $2000.

·         Family counseling. The behavioral changes to a patient with FTD are devastating. The toll this takes on the immediate family of a patient with FTD are equally overwhelming. Spouses become primary caregivers on top of increased family duties. Children, already faced with the challenges of growing up, are thrust into confronting an unknown world by directly experiencing a parent’s diminishing brain function. This is very hard for any family member to go through yet insurance coverage for counseling and caregiver support is very limited. Initial goal for family counseling is $10,000. There is an immediate need for family counseling.

We ask you to please support this call to support Jeannette and her family through this disease. Family, friends, we may have known you for years or just met in passing. Perhaps you’re a friend of the family or a friend of a friend. Maybe you’re just passing through. You cannot imagine what your generous support means to us as our family continues to deal with this horrific disease.

We, Jeannette’s brother and family, along with the support of other family members and friends will use the money raised here to directly pay for expenses in the areas described above. Our intention is to coordinate with Doug, so we can provide the support that Jeannette and her family receive directly to the providers. This way we can reduce the burden of Jeannette’s family from dealing with the additional task of managing catastrophic medical finances.

Thank you for your incredible kindness, generosity, thoughts and prayers. Please reach out with any questions or comments. Remember to return here as we hope to provide updates as things progress. And most importantly, share this story wide and far. We are not only helping a beautiful person and wonderful family, we are fighting for everyone with this horrible disease and a future without FTD and ALS.