With eight of her family members currently affected by a rare and deadly genetic disorder, Mrs. Alice Lindahl does everything she can to help them — from providing her unwavering encouragement, to supporting ongoing research, to a courageous and unique donation: her late husband's brain. In her own words, Alice shares the journey that began over 20 years ago in Minnesota and ended up over 1,200 miles away at Butler Hospital.
I had been married for over 30 years to my high school sweetheart, Wayne, a man ho I knew loved me and was very devoted to our five children. Why then, would I be on the verge of divorce, and what could be behind the changes in my loving husband, an endlessly optimistic man, now showing so much anger and frustration? The news was not good. My husband had CADASIL.
CADASIL (Cerebral Autosomal Dominant Ateriopathy with Subcortical Infarction and Leukoencephalopathy) is a rare, genetic neurological disorder that can cause stroke, migraine-like headaches, anxiety and depression, as well as memory and cognitive problems.
Mrs. Alice Lindahl with her late husband Wayne in 1999.
It took years to get that diagnosis. At 45 years old, the doctors first believed Wayne had a stroke, but tests could not confirm this. By the time he was 50, we saw a geriatric specialist to rule out the possibility of Alzheimer's disease. We were then sent to see a psychiatrist with the thought that Wayne was suffering from depression. After another stroke-like episode, I insisted that he be admitted to the hospital in Minnesota where we lived. MRI results showed Wayne's brain to be deteriorating in an extraordinary way, but no diagnosis could be made. A year later, we had moved to Texas and our new neurologist ordered another MRI. After reading it, he commented that after practicing for 25 years he had never seen anything like it. We returned to MN and finally had a diagnosis of CADASIL.
There was no proven treatment for the disease, but we learned there was a genetic component. My only response at that time was: Genetic? Our children? It can't be true. Wayne's younger brother started showing many of the same symptoms at that time. Then in October 2000, our then 39-year-old son was diagnosed with CADASIL, and in 2002, our oldest son, 43 years old, got the same horrid diagnosis.
In the summer of 2000, Wayne had to be put in a nursing home. He was 62 years old. He passed away peacefully in August 2004. His younger brother, also diagnosed with CADASIL and living in the same nursing facility, passed away six months later.
During this time, I contacted doctors all over the world in a quest for information and support for CADASIL patients. My hope had been to find someone who would be interested in my family and CADASIL, possibly for research. In my search, I found two doctors who were very knowledgeable about CADASIL, Dr. Stephen Salloway and Dr. Stephen Correia with the Memory and Aging Program at Butler Hospital.
These doctors ran a clinic that had become a leading center for CADASIL clinical care and research. Plans were made to have Wayne's brain sent to them after his death. We also sent the brain of Wayne's brother. In the summer of 2005, I received a call from Dr. Correia who told me about a new drug trial being conducted by a pharmaceutical company, and he asked me if our family would consider participating in it. This was the first ray of sunshine in a very long time! Over the next five months, I made five trips east with some of our family members.
I am so happy that receiving the donations of the brains has been useful to CADASIL research and am hoping that these doctors may be part of the answer to my prayers. I am forever thankful to Drs. Salloway and Correia for all they have done for my family already.
Dr. Salloway (left) and Dr. Correia say that analysis of the brain tissue from Mr. Lindhal, his brother and other patients with CADASIL have led to new discoveries.
Analysis of the brain tissue from Mr. Lindhal, his brother and other patients with CADASIL have led to new discoveries about the molecular changes causing the small arteries in the brain to degenerate. These advances will hopefully lead to new treatments in the future. Expressing his own appreciation for Alice and her family, Dr. Salloway said, "It is through the generosity of people like the Lindahls that make it possible for scientists and researchers to unlock the mysteries of diseases that affect the brain."Because of Alice's donations and those of many others, many new genetic markers related to CADASIL have been identified. As of today, thankfully, her family members are doing well showing little to no clinical signs that their disease has progressed.
If you would like to make a donation to CADASIL research at Butler Hospital, visit www.supportbutlerhospital.org. This story is an excerpt from "My Family's Story," written by Mrs. Lindahl. For a copy of Alice Lindahl's the full story, contact The Butler Hospital Foundation at 401-455-6581 or e-mail Srey Som at firstname.lastname@example.org.