Donate to support Alyce Dicker’s Paralysis Recovery Journey

I’m writing this to raise public awareness regarding Transverse Myelitis and to try to heal myself in the process.

On February 17, 2023, I received the shingle vaccine; a few weeks later I noticed I was having numbness from time to time in my thighs.  In addition, I wasn’t going to the bathroom regularly and I was also having back pain. So I reached out to my primary care doctor and I told her what was happening and she thought there was a chance I had a kidney stone. So she sent me to get imaging done, and the imaging revealed that I was retaining stool but my kidneys looked fine to her. She told me to simply increase my fiber which would relieve my constipation.

On May 12, 2023, the following occurred:  It started like any other weekday; however, this day turned out to be a nightmare of a lifetime and ended with a nightmare that I still cannot get over. I was at work when I had the most excruciating pain in both my thighs.  After several minutes, without relief, I asked my girlfriend to take me to an urgent care facility nearby.  As I was making my way to the front door, I noticed that I needed to hold on to the walls to walk.  I opened the front door but knew if I let go I was going to fall.  I waited there holding onto the door until my partner (Nancy) got there to grab my arm and take me to the car. We pulled up to the urgent care facility, and she came around to assist me.  I described to the doctor what had happened.  It took him all of two minutes to come to the conclusion I had sciatica.  The doctor didn’t even examine me and I told him I didn’t trust that diagnosis but he was confident of his opinion.  I proceeded to ask him if he was sure and he assured me that he was correct in the sciatica diagnosis.  He then sent a nurse in to give me an injection and called in a couple of prescriptions to the pharmacy. After picking up the scripts we headed home.  My partner  (Nancy) was holding my arm and we approached the stairs.  I lifted my leg but I couldn’t lift it to clear the step.  Nancy was afraid I was going to fall and I needed to tell her I couldn’t lift my leg over the step.  She needed to clear her hands and help get my leg up on the step.  When we finally got in I had the urgency to urinate.  We went into the bathroom and I tried to urinate but felt like I couldn’t; so I started running the water from the sink, and  I was able to get a little out. We then headed into the living room.  I sat down on the couch and it was in that instant that I felt my legs had disappeared.  I started slapping my thighs and said I can’t feel my legs; I can’t feel them.  I never felt so scared in my entire life.  We called 911  to take me right to the hospital.  Several MRIs, a Lumbar Puncture, and several blood tests later to get a diagnosis of Acute Idiopathic Transverse Myelitis.  A rare neurological condition caused by inflammation of the spinal cord. From my perspective, this meant complete paralysis from the waist down including a loss of bladder and bowel function. 

I was in the Hospital for 10 days and I had  5 days of steroids and then 5 days of IVIG.  In hindsight, I can’t even recall being put into the MRI machine for hours of imaging.  

On May 22, 2023, I was taken to Kessler Institute for intense physical therapy.  It’s an acute facility for these kinds of problems.  I was getting three hours a day of therapy.   Things felt very grim.  I couldn’t even move a toe.  I lay in bed with my legs covered because looking at them motionless made me sick to my stomach.  I was on so many types of stool softeners and laxatives to combat the constipation.  However, the staff made it clear to me that they were "sick of cleaning me up".  I cried at the helplessness that I felt, and what had become of my life daily.  I was paralyzed and pooping uncontrollably but they blamed me.  It got to the point where they didn’t even respond to my call bell or come in to turn it off and tell me that someone would be right back.  Sadly enough, I needed to ring the bell several times and stay for long periods in a thoroughly soiled diaper.  At times, it was several hours before someone showed up to change my diaper. I ended up with several UTIs (Urinary Tract Infections) from sitting in my feces. I was there for a total of 36 days.  I needed a lot more therapy but the insurance company decided I had enough sessions. I suffer from severe nerve pain in my legs (neuropathy) and it feels like I’m getting electrocuted and excruciating pain with no help in sight. 

On June 27, 2023, I was transferred to Excel Care, a nursing home closer to my house because I missed my family; but that turned out to be a big mistake.  The lack of therapy was astonishing as the care was even worse than what I suffered at Kessler.  I would be lying in my waste for hours crying and pleading to be cleaned.  I learned these facilities are very under-staffed and the patients suffer because of that.  I think back and remember how depressed and helpless I became and the staff members, for the most part, couldn’t care less.

On July 28, 2023, I was transferred to Anchor Care Rehabilitation up in Hazlet, NJ so I could receive physical and occupational therapy, They even had Robotic Therapy that could help me walk. I was there for 5 months; thank god I knew someone who had convinced the facility to cater to my needs. I transferred there and was given the best therapy pro bono, even though it was two hours away from home.  Unfortunately, this location prevented the ability to get many visitors making me feel isolated and alone beyond belief. I missed my loved one’s something awful. I never felt so alone in my life, especially with all that I was going through. 

On December 30, 2023, I finally returned home.  Seven months of pure hell  I had experienced.  I thought that returning home would make me feel more "normal"; however, it pointed out the obvious that this was not even close to "normal".  I felt so trapped, depressed, and more anxious than ever.  When you know that you're trapped in bed, when left alone it is horrible.  You start thinking of the worst-case scenarios and life becomes a living hell.  I realized having to rely on someone 24/7 is beyond comprehension,  When I was at the rehabilitation center, I was never alone even though I felt very alone.   I thought that when I came home I would have PT coming to the house; but "no" my insurance company didn’t cover that. I’m living in my living room in a bed alone, apart from my fiancé in the bedroom. I went close to 2 months without any therapy and lost any progress that I had made. Now that I’ve been home for over a year I feel like life is a carousel of doctor appointments and physical therapy and I am all cried out;  I had never imagined that someone could suffer to this degree.  

Eventually, I found a neuro-rehabilitation that doesn’t accept my insurance, but I knew I needed it. Paying fees 3 times a week, out of pocket, is getting beyond costly. I’m on disability and it’s just not enough income with all of the overhead expenses. The insurance company only pays for a certain amount of diapers and underpads. I’m running through the supplies and spending money to get more since they don’t send enough. I had hoped that I’d be one of the people to recover from this hideous condition.  I’m slowly coming to terms that I need to take one day at a time and focus on living my best life.  Even though my chances of walking and getting my independence back are not all that likely, I pray every day that this miracle will occur. This is where donations could make the difference between life and death.  I need very expensive equipment that I could use on a daily to strengthen my body amongst other things and I beg you to consider donating any amount of money to help me achieve my goal. 

The following is the equipment I will need to help improve my life and potentially help me walk again :

A portable ramp so I can visit my family. I have missed so many holidays and birthdays 

An electric wheelchair to help move me from place to place. I have injured my shoulder and suffered much pain wheeling myself around on a manual wheelchair.

A standing frame that would allow me to stand since I can’t do so. Unfortunately, I have also developed osteoporosis from not standing.

A gait trainer to help facilitate walking and balancing without bearing weight on my shoulders. 

A fully electric high-low hospital bed with an air mattress. I have developed bed sores that have been getting infected and my insurance does not pay for either one of those.

Eventually, I would love to get a handicap-accessible vehicle so I could easily get in and out of the car that has a built-in ramp, and possibly I could drive on my own and become more independent. 

Life is so frustrating for me. Most of the doctors here have never even heard of this illness. I want to raise public awareness about vaccines and the side effects that they can cause. Any donation that you can afford will help me attain enough money to ease my suffering.  My life is now in your hands and I pray to g-d that your donations will help me walk one day.

With Loving Regards, 

Alyce