Cerebral Amyloid Angiopathy
Vicki came to me in late 2015 and was concerned that she was losing track of things and was concerned about memory loss more specifically Alzheimer’s disease as she watched it take her dad. Her largest fear medically was AD as most would I tried to help her see she was working to hard multitasking too much. She continued to have her fears and concerns in the spring of 2016 we scheduled an appointment with a neurologist after consultation and preliminary evaluation CT was ordered when we returned for results and follow up, we were told she had small vessel white matter disease. “A bit early (at age 56) but not uncommon nothing to be real concerned about reevaluate in 12 – 18 months. We took the trip she had waited 3o years for in October of 2016 the California Redwoods and we had a great time she was like a kid at Disneyland, but something was going on small, isolated events but something had changed in her memory still not noticeable to outsider or even close family as we had been together so long, we answered questions as one. Even I did not realize how often, I just did not let her search for the right word, or she would nudge me to help with the event or word.
November of 2016 Vicki was home from work just not feeling right said she had the shakes felt like she had too much coffee but had only had 1 cup, shortly after her finger turned purple and white. She called our family doctor and sent picture to her at which point she had us come to the office immediately. The doctor ordered initial CT of left-hand arm followed by MRI of back neck and head. This event started the search for what was going on we were referred to a local neurologist that also did initial evaluation and reviewed the imaging. Again, his opinion was possible artifact damage from trauma early in life but again on the memory test she struggled without help. From this point forward we constantly searched for solutions hoping to find something that could be stopped or at the very least slow the progression.
Thanksgiving eve of 2016 she had her first noticeable event it was significant vertigo followed by nausea and leg weakness but being the family anchor and Super Host, she insisted it was nothing and did not want people to worry. She completed her Thanksgiving preparations and did start to feel much better over the next week. I received a call from medical facility the following week from the referral that we could be seen by the neurology department we put together all her imaging including CT from 2012 headaches that were diagnosed as temporal nerve related.
More imaging was ordered of the brain, and we were initially referred to the MS clinic for evaluation and treatment plan. Before we could make the appointment for MS clinic, we received a call from primary that we needed to get to ER the most recent MRI showed hemorrhages in her brain. After additional scans CT to find any active bleeds and battery of additional tests we were released with assurances that she had no bleeding. Followed up with MS clinic and diagnosed with probable MS given medication and treatment options with reasonably good outlook. Doctor advised we get the bleeding in her brain taken off her medical reports. The next day I called to talk to the Neuroradiologist about getting reports correct he advised me he was not wrong that he had found hemosiderin deposits. We contacted the facility and connected them with the neuroradiologist he explained the location after which they concurred and ordered a 3T MRI the results of which led us to the stroke clinic
We started researching microbleed and memory loss it quickly led to CAA Cerebral Amyloid Angiopathy https://www.angiopathy.org/ . Over the next 5 months we hoped for anything that would exclude CAA. The original 2017 diagnosis was superficial siderosis and possible CAA. Vicki had none of the markers for conventional stroke not overweight no HBP or cholesterol in good physical condition. Our Neurologist was very thorough and like us searched for a possible cause not related to CAA Vicki had various blood tests along with lumbar puncture to assist in formal diagnosis. After our first formal follow up with Neurologist, we both cried on the way back home. From that moment on I never spoke of Cerebral Amyloid Angiopathy to her as a possibility only that we wanted to rule it out. After 5 months of testing and waiting on final reports from the Mayo clinic along with the CDC they found that she had the shingles virus in her spinal fluid that had traveled to her brain and possibly had caused the damage. We were hopefully optimistic that it was the only thing we were dealing with she was started immediately on aggressive treatment through oral medication. Unfortunately, over the period from October 2016 through May of 2017 Vicki had continuing memory loss and started losing the ability to spell. Although due to her physical abilities and muscle memory we were able to continue with a good quality of life. Events continued with some regularity and each event would take something from her capacity to learn or complete tasks that were second nature to her previously. The most significant at the time was her ability to read her own handwritten recipes. She was an outstanding cook and got so much joy from creating dishes for especially the grandkids along with niece’s nephew’s brothers and sisters but most importantly Dan (Our Son). She loved to watch people eat her meals and deserts. This was so very painful to watch the frustration and anger at herself because she struggled and needed help with the recipes, but she continued to go through the frustration and sadness to keep the secret and make her family and friends happy with her special the smiles were her very best medicine.
From May of 2017 through December of 2019, we had a good life despite her continuing declines in cognition our world just got smaller and simpler, basketball games to watch the grandkids trips to San Antonio for State playoffs. We continued to enjoy everyday she would and could still drive but only on very familiar paths even with navigation assistance it was a challenge for her but as usual never complained to anyone.
Jan of 2020, she had a major stroke (Bleed) initially the doctors did not think she would survive the first 48 hours but after 3 days in ICU 4 days in stroke care unit 17 days in rehabilitation hospital together we headed for home she had lost all recollection of our home. The home she had created in 2018 working with the builder’s wife to create the perfect house. Not only the location but she did not know the home inside actually got lost going to the bathroom. But like learning again to walk talk and use her left side in rehabilitation she worked so hard to get familiar with the house, but her biggest motivation was to get to our youngest grandchild’s basketball games. One week after getting home we made a home game, and it was fantastic she was unaware how far she had come or how remarkable her progress was. The doctors at this point officially changed the primary diagnosis to CAA. Over the remaining year of 2020 she continued to improve although the damage was significant, she again learned to adapt and the spells or “wobbles” as she started calling them. Doing her best to keep it from anyone due to pride and concern for others worrying. Covid gave us the opportunity to be together as I was able to work 90% from home. August of 2020 Vicki experienced new rapid losses of cognition along with paranoia. At times complete loss of reality including visions of loved ones that had passed away she lost 25 pounds in 1 month. We frantically tried to find treatment for her newest symptoms in the middle of the pandemic the doctors believed she had a non acute stroke and with her disease being non-treatable all agreed she may be best at home due to the pandemic.
We found psychiatrist that agreed to treat her due to the variety and severity of her medical issues several specialized treatment facilities would not take her as a patient and primary neurologist was out of the country. She was started on Seroquel and over the following 4-6 weeks the paranoia and delusions started to fade some and slowly started eating again and sleep at night. The remainder of 2020 was tough on her, but her focus was again on getting to ballgames of our now senior grandson.
2021 as the disease progressed and events would come more often, being away from home for extended periods became more difficult, even basketball games that she looked so forward to started to become challenging, but she continued to store up all her energy to be at her best on Tuesday and Friday nights.
Most of the time from August 2020 forward we had caretakers at the house if I was at work. Which she despised the thought of “I Don’t need anyone to be here!” The good days became scarce the one constant always remained that we don’t tell anyone when she had events even when she started to confuse family members and lose moments in time more often.
The relentless disease continued to take things almost daily by late 2021 Vicki suffered a major bleed on August 26, 2021, once again we met with the doctors, and they advised that the future was grim, and they were not expecting her to make it through the morning. As was the case throughout her illness she fought for family and even in the continuing Covid pandemic restrictions. She willed herself enough time to allow our son and his family to be together with her for the last breath on earth August 27 2021.
Vicki Sue Hopper was absolutely one of a kind and this disease took her way too early our hope as a family is to help other families in similar situations learn what the disease is and does, fund additional resources for treatment and cure in addition to support for those dealing with CAA as a patient.
The mission of our family is to help through education and research by connecting with the group at https://www.angiopathy.org/ a portion of all donated funds will be directly donated to assist in their research. Additionally, we want to increase awareness and provide direct support to friends and family of individuals diagnosed with probable and confirmed CAA. Our vision is to create a contact support directly to our family for those going through the progression of this awful disease by sharing Vicki’s life and wonderful example of doing for others. The final portion at this point is to provide financial support to patients and families that need assistance with caregiving medical or other related expenses.
We are not a professional corporation only a family that has witnessed the full devastation of CAA over a 5-year period our program will evolve as things change but our mission to support patients and families along with helping to fund research and a cure will always be the goal, please help us support those that are facing a disease with no current treatment or cure while honoring the memory and life of Vicki Sue Hopper
