Ashley’s Story

Site created on October 17, 2023

On Sept 16th Ashley had an episode of confusion and delirium while at work. After a trip to the ER, we were told that it was likely schizophrenia. Erik immediately flew down to FL to pick her up and bring her home. The weeks that followed were some of the hardest of our lives. It was devastating to watch our sweet girl go through confusion, delusions, darkness, fear, and delirium. We also began to question the original “diagnosis” as we continued to see symptoms that felt to us to be more like dementia, watching her memory progressively decline. So, we literally clawed our way through our Health Care and Mental Health Care Systems and it was simply exhausting. The fact that she is an adult,  and was completely unaware of her illness, made everything twice as difficult. If not for Erik’s boldness and pushback, we would still be waiting for psychiatry and MRIs, and answers. Thankfully, we finally got a Dr who saw the urgency and started to make things happen for us. 


On Tuesday Oct 10th, Ash had her MRI and the next day we got her diagnosis. We were devastated to find out that she has a progressive degenerative brain disorder called Leukodystrophy. It is deteriorating her white matter/myelin and it is eventually terminal. Her damage is quite extensive and has run an unusually rapid course. There is no cure. Each case of the disease is caused by one of 50+ different rare genetic disorders. We are still awaiting her genetic test results from Mayo. 


Unfortunately, most cases of Leukodystrophy have onsets in childhood and so there are almost no specialists who have experience  with adults, especially with the way that it is presenting in Ash. We have a couple of medical professionals (and Erik) working to get us in with specialists in either Chicago or at Mayo. But, they are all pediatricians and so far we’ve not made a lot of progress on that front. Ash’s psychiatrist believes that her age and presentation of the disease is so rare that there may only be less than 5 people in the world in her situation. 


And the situation is very grave. She is presenting with what can only be compared to late stage frontotemporal type dementia, with additional psychiatry and mood disorders, and then developing physical/motor complications. It is one of the cruelest and most inhumane things that we have ever witnessed.  Some days we are in shock and it’s still so hard to believe. Some days we are so filled with overwhelming anger and grief. Some days we are just trying to get through without collapsing from exhaustion. It is a nightmare. 


But, everyday we try to serve Ash the best way we can. It’s not always easy, and many days it may be the same 4 questions and obsessions asked of us every 5 min for up to 12 hrs at a time. She does not sleep well at this point, and neither do we. We tell her everyday how much we love her and how proud we are of her. We try to make her as comfortable as possible, but most days that is an impossible task. We are already in desperate need of 24 hr home health care and hospice, but we are still trying to get that set up. Erik’s sister Tanya was in town for a few days and gave us a couple of nights respite and that is about the best gift we’ve ever been given!! 


Throughout the last month Ash has had some good moments with some sweet times of connection. She has also had lots of very very bad moments or days.  And then sometimes we’ve been in awe of how she can still be so sweet, conscientious, and thoughtful in the midst of all the chaos that her brain is creating. She is truly remarkable!! Which makes all of this even more unreal and cruel. 


We know that we have some very rough days ahead as her moods are growing increasingly more agitated and angry. It is unbearable to witness.  She also rarely remembers or believes that she has this disease and all of its symptoms. We are so grateful for family and friends who have gathered around us thus far, and for those who will do so in the following weeks and months. We still sometimes don’t always know what our needs are because we are frankly exhausted. Also, maneuvering through the details and the systems to get professional help is a full time job. And each day is so volatile, that our needs sometimes change day to day. We have friends and family who have been helping to coordinate various ways to give, and we will use this space for communication and coordination of those ways. 


In the meantime, pray for peace and comfort for Ash. Pray for SLEEP for all of us. And pray that we quickly get the services  that we need in order to keep our beautiful girl at home with us so that she can be cared for and loved on. 


We will update in the “Journal” area when we can. And we do ask that you read the first journal entry on 10/17, which includes a few more details. Thank you for loving our girl! 





 




Newest Update

March 8, 2024

Journal entry by Mandy Henry —

Hello All, 

It’s been quite a while since we’ve given an update about Ashley. Starting around Christmas, and then through the whole month of January, it was quite honestly one of the most draining months so far. The transition of getting Ash into her new living situation, dealing with her guardianship and court dates, and all while being very very sick through the whole month of January was just A LOT to deal with. But we all made it though!!! 

So how is Ash doing? She is actually doing really well considering. She is in a beautiful and loving facility in Beloit just around the corner from our niece’s House. Of course, nothing is ever easy or smooth, and we had some devastating news right before she was going into assisted living. In WI anyone with a medical power attorney over them cannot go into assisted living, only memory care. I guess the state thinks that anyone with an activated medical POA needs more care than assisted living provides. So, she had to go to the memory care side, which definitely has more of a nursing home feel when you walk in. So that was hard news for her and we were so so worried that she would reject that living arrangement. 

BUT… She is doing so great there! It’s the happiest we have seen her, in a very long time. Her meds have helped TREMENDOUSLY with many of her psychological symptoms and her memory is even a bit clearer SOME days. She is usually accepting of her diagnosis and will tell you she has it, but not always  believe or understand how it causes her disability. Surpisingly though, she will admit that she has memory problems most days. This is the magic of Memory Care. She feels safe and taken care of, every one of her constant needs are being met with consistency and repetition, AND…she gets to keep her room at 80 degrees 24/7. There are lots of young people on staff that she gets to interact with all day. And the directors there are absolutely amazing with her. Everyone just loves her of course! She has even been helping with the older patients and has a particular one that she loves dearly. Sometimes she accidentally calls the facility her “work”. 🥰 We, along with friends and family, take her out all the time, and visit her multiple times a week. It’s taking a village, but we are all trying to give her the best life possible with what she has been dealt. 

It’s really a miracle, and she has adjusted better than we could have hoped for. Most days when we take her out and about, she is always happy to go back to her new home when it’s time. So, we are in a good place psychologically, behaviorally, and mood wise.

But…she is experiencing more and more physical hardships. Most days, she moves and walks pretty slowly. And, she is needing more and more assistance with bathing, etc…But, she is handling the need for assistance and help really well. 

Ashley is able and willing to have people visit her and also take her on short outings. She also has freedom with and access to her phone now. So if anyone would like to text, call her, FB or Instagram message her, visit her, or take her out, we welcome any and all family and friends who are comfortable in doing so. We do ask though that anyone wanting to visit or take her out, reach out to us first. We have to approve visits and also there are some details we would obviously like to share with you before doing so. 

Once again, Thank you for loving Ash and for being part of her life. 

 

 

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