Carolyn Richards-Covid Medical Need

We're raising funds for our Mom, Carolyn Richards. She's been fighting for her life after having Covid the first week of September 2022. As of today, she has spent over 112 days (and counting) at multiple hospitals and rehabilitation facilities since October 11, 2022. As you can imagine, the hospital bills are steadily coming in and are out of hand at this point. Her short-term disability is up and I’m afraid that her 20+ year career at Capital One is possibly coming to an end due to her not being where she needs to be to return to work. This has left our parents completely stressed and overwhelmed financially. I know Mom’s medical and financial burdens have only begun. We don’t want her future treatments or therapy to be determined by whether she can financially afford it. She's given so much to so many and she deserves the best! All funds will go toward the medical and financial burdens that this has caused as well as future treatments. We want this to be one less thing for her to worry about so that she can focus on getting better. Would you help us?

This is her story....

The last 6 months have been a whirlwind…a front-row seat to a terrifying movie stuck in repeat. I’ve watched my best friend, the strongest person I know….my Mom, fight for her life every day, day in and day out for the last 6 months. We’ve cried, we’ve prayed, and some got angry but we never lost HOPE. You may or may not know Carolyn Richards but you’ve seen her at some point in your life. She’s the person that holds the door open for someone who’s not even close to the door, she’s the warm smile and the genuine “hello, how is your day going” to strangers, she’s the one that would give you the shirt off her back on a cold night, and the last dollar in her pocket. She’s the person at work that always has “the good candy” in her bowl and will drop what she’s doing to go to a different department to help find the answer to someone's problem. My mom is a superhero in every way.

October 11, 2022, was the first day that we realized we boarded the “nightmare express” and the doors had already closed. It was Mom’s first day back at work after taking a week off to move into their new “forever home”. She had just recovered from having covid in early September and was still feeling the fatigue from it. That morning she woke up to a sudden “pop” in her head. Her hand immediately started shaking and within a few minutes confusion set in. I called her that morning to see if she was excited to start back at work in her new house. Her exact words were “I don’t understand…I’m looking at the computer, I don’t understand what it says and I don’t understand what I’m supposed to do next”. My immediate thought was that she had a stroke. I met my parents at Spotsylvania Hospital after she was admitted. A tray of food sat next to her with the cover still on. I asked if she ate her lunch as she stared at it emptily. She responded that she didn’t know how to open it. It was then that I realized how serious this was. She remained at Spotsylvania Hospital until October 13th. The doctors ruled out her having a heart attack or stroke and despite my arguments with them about her condition, the doctor said “This is a small hospital. We don’t have the specialist needed to figure out her condition. I recommend that you take her to an endocrinologist”. I asked them to transfer her to a better hospital and they refused saying they don’t transfer patients. They also couldn’t explain why the recommendation to an endocrinologist or refer us to someone so we didn’t have to wait 3-4 months for an appt. Mom returned home that day despite her not being able to process things as we spoke to her, barely being able to walk and having extremely slow uncoordinated movements.

The following morning she was worse. With my Dad’s help, we put her in the car and I drove her to the ER at VCU Medical Hospital. By the time we got to the hospital, she was unable to stand with tremors throughout her entire body, barely able to speak and couldn’t answer basic medical questions. For the next 13 hours, I sat by her side answering questions and giving the background of what had happened after having covid. The ER doctors and team seemed to understand that something more was going on but unfortunately, the more tenured neurologist wanted to put her in the “Parkinson’s Disease” box and kept questioning us saying “Maybe she hid her symptoms from everyone”. The meds for PD seemed to be helping so to them their job was done. During that time she had multiple MRI’s, CT scans, X-rays, bloodwork, etc. There was talk about doing a lumbar puncture to test her spinal fluid which we 100% agreed to but as soon as they determined that she somehow had an acute onset of a rapidly progressive PD, they didn’t feel that the lumbar puncture was necessary. I argued the fact that more testing was needed but I could tell my Mom just wanted to get better and go home so she could continue doing what she loved which was working at Capital One. Mom was at VCU from October 13th - 24th and transferred to rehab for an additional 2 weeks of therapy. She made great progress in rehab over the 2 weeks. She was able to walk with a cane upon leaving and was motivated to continue to work on her cognitive challenges so that she’d be able to go back to work.

Progress continued until the first week of January. Extreme tremors, confusion and the inability to use her body were getting worse by the day. She had an ER trip to Mary Washington where they discovered she had a bladder infection. It seems simple but apparently in someone who has “PD” your body gives everything to fight the infection and has nothing left for your PD. Mom completed her antibiotics but things still weren’t getting better. Over the next few weeks, she relied heavily on my Dad and myself for getting up, eating, and all everyday tasks. She went from having a mild tremor and being slower at processing things to having major muscle jerking, and full body spasms with an uncontrollable high level of anxiety. Around January 18th, while trying to hold her leg down during a spasm, I noticed that the muscles in her feet were pulsing and trying to curl under. This continued to get worse and she was taken by ambulance to Mary Washington again on January 22nd. She was there from January 22nd - February 3rd. They did very little to help and just treated the bladder infection at that time. Several neurologists examined her and even said “This doesn’t look like PD” but declined to do additional testing. I argued with the doctors when they wanted to discharge her because she was in the same condition she came on. The response again was, “We’re a small hospital and don’t have the specialist needed to help her”. I asked for them to transfer her to a better hospital and was told that she doesn’t have a “life-threatening” condition and wouldn’t be accepted. Mom was transferred to Carriage Hill Health and Rehab Center from there. Before being transferred the nurse and doctor confirmed that all of her records would transfer with her and that they would have the medication necessary to prevent her from missing any doses. At this point, Mom was on at least 8 different medications that were strictly for PD and muscle spasms.

She was transferred around 11:00 on February 3rd. I knew the transfer would be stressful and figured she’d need to rest the remainder of the day while she got settled. My mom called me at 1:30 am that first night saying she needed an ambulance. She felt that she was going to die and that something was majorly wrong. My Dad and I rushed to her bedside because she didn’t want to die alone. Watching my warrior Mom sobbing because she didn’t want to leave us was heartbreaking. All of her issues were coming on full force but the nurse assured me that this was a normal “Parkinson’s episode” and it could be handled there. What I later found out was that she wasn’t given any of her time-sensitive medications the day of the transfer causing her body to freak out. They gave her additional medicine to try to relax her and I joined her on the bed until she fell asleep around 4:30 that morning. She was at Carriage Hill from February 3rd-March 9th. Her entire stay was very stressful for her and our family. We had to monitor medications, food, and care daily. If we weren’t at the facility to monitor her care her meds wouldn’t show up, food wouldn’t be delivered and/or they wouldn’t properly care for her including being physically abused at times by some of the staff. During this time her neurologist examined her again and determined that the muscle spasms and unexplained anxiety were the results of a movement disorder called Functional Neurological Disorder. After thoroughly researching this and seeing Mom's physical responses, this made sense but WHY did both PD and FND start to begin with? What no one seemed to understand or believe, was the fact that I knew in my heart that all of this was caused by Covid! Her symptoms started 6 weeks after covid and no one seemed to be listening.

Mom was discharged from rehab on March 9th because the daily stress of being there was causing more issues. She wasn’t able to care for herself so we spent the week setting up in-home physical therapy, occupational therapy, speech therapy, and nursing care. On March 16th, she was taken by ambulance to Mary Washington Hospital due to her having trouble breathing. She spent 3 days in the cardiac care unit while they ran numerous tests. She was discharged on the 18th and returned the following morning due to her symptoms worsening. She had picked up Covid and Flu B from her previous hospital visit. I was returning from being out of town and noticed her list of medications online was not accurate. I got to the hospital around 6:30 pm to find my husband feeding her dinner and enjoying each other's company. While reviewing the meds with the nurse that was starting her shift the daytime nurse added a bag to her IV. Within 10 minutes she started getting anxious, had trouble breathing, major hallucinations, and went into full-body spasms. The nurse panicked and asked if she was like this all the time which of course she wasn’t. We quickly tried to help get Mom to call down. I looked over and noticed the new medication scrolling on her IV machine read, “Remdesivir”. I quickly disconnected it and threw the bag in the trash. (Our niece was treated with this during the height of Covid and passed away.) I made sure that she wasn't given that medication again. She had no symptoms of Covid or Flu, no issues breathing and wasn’t congested, so why give her something that was clearly toxic? The nurse agreed.

This Mary Washington visit was from March 19 - April 8th. They were mostly concerned about her Covid and Flu diagnoses and ran a few other tests during that time. They worked on approval to discharge her to another skilled nursing/rehab facility as of March 23rd. March 24th everything changed. A neurologist from MD was for the day and came to examine her. We had an hour long conversation about Mom’s history from the beginning. He said, “My first thought when I walked into the room was that this woman doesn’t have Parkinson’s Disease or Functional Neurological Disorder. Something else is going on here”. The sky opened up and the angels were singing! He ordered a series of tests including a lumbar puncture, multiple MRI’s, EEG, and extensive lab work looking for more rare conditions. The following 2 weeks were filled with testing. Her spinal fluid had increased white blood cells and the EEG showed signs of an infection.

On April 6th we felt a little defeated, the attending doctor (who changes every 2-3 days) felt she had long covid and recommended we find a rehabilitation facility and try to make her comfortable. I pointed out that her testing showed signs of an infection and that they needed to test for more rare conditions until they figure it out. He went on to say that the US has the best hospitals in the world and with them being a “smaller hospital” we would need to take her to Johns Hopkins or try the Mayo Clinic. I was furious! All this time at the hospital just to start over again somewhere else? They again refused to transfer her to a facility that could help. We felt defeated but felt there was still hope.

April 7th, the infectious disease doctor confirmed that tests came positive for GAD 65 antibody and she’s been diagnosed with autoimmune encephalitis! She would need to have Plasma Apheresis where they filter the antibody out of her blood and she was transferred to VCU on April 8th. Upon transferring, all tests including the lumbar puncture, PET Scan and additional blood testing were redone. She had to have the surgical procedure to have the IV inserted into her chest behind her collarbone. Removing the antibody from the blood is a long process. The procedure would start with a total of 5 days with 1-2 days in between. Multiple IVIG treatments are needed to boost her immune system as well as heavy steroids afterward in hopes of a full recovery. There’s no guarantee of how much she’ll recover after this is done and she may need additional IVIG treatments for several months and possibly years after if she feels her symptoms come back. She will need intense physical therapy for an unknown amount of time BUT she shouldn't continue to rapidly decline and for that, we’re so thankful!

She's continuing treatment at VCU as we speak. I'll post updates including any progress as we go along! Thank you to all who donate and share.