I want to thank my family, friends, doctors, nurses, therapists, and you. I want to thank Alexis for typing this while I dictate it to her and putting up with me.
My name is Todd. I was born in September 1976 (37 years old now) and I live in Philadelphia. I’m not a scientist or a doctor, but I’ll do my best to explain. In March 2013 I was diagnosed with Paraneoplastic Cerebellar Degeneration, related to the Anti-Tr antibody. I’m sure you are wondering what is paraneoplastic syndrome and what does the Anti-Tr mean? I will do my best to explain the very rare and very complex syndrome I was diagnosed with as simply as possible: Your body makes antibodies that will attack cancer cells or suspected cancer cells. When those antibodies make their way from your bloodstream into your spinal fluid, they can attack your healthy Purkinje cells in your cerebellum. In my case, the Anti-Tr antibodies (which are connected to Hodgkin’s Lymphoma) made their way into my spinal fluid and have caused cerebellar degeneration. Your cerebellum is primarily responsible for movement (speech, coordination, walking, eye movements). There is no way of knowing how much damage was caused, only time and my progress in rehabilitation will tell, thus my reason for documenting my progress in rehab.
I’m kind of a private person, but this website will monitor my progress and be a diary for me. It’s hard to be private when you have to go to the bathroom with three people who don’t know each other. I hope to use this website for motivation, it’s primarily for me. But why not let everyone else see it. I’ll begin with a story.
In January 2013, I thought I needed glasses. So I went to an optometrist who said I developed 20/30 vision. So I got glasses. I thought the glasses didn’t work.
In mid-February 2013, I gave up cigarettes. I also gave up coffee and alcohol to help with quitting the nicotine. I got dizzy and couldn’t speak well and I attributed that to withdraw. I also had flu-like symptoms and slurred speech. In mid-february, a friend came over and I tried smoking and a coffee, and I fell into a door. I cut my head, so I had to call an ambulance. In the ambulance, I remembered my driver’s license number and social security number. Then I went to the ER at the Hospital of the University of Pennsylvania (HUP) and I didn’t go home. There they stitched me, and then moved to the 9th floor to see what the problem was.
In March 2013, they thought I had everything. After multiple CT scans, MRIs, and spinal taps it was finally found out I had a paraneoplastic cerebellar degeneration syndrome. I stopped eating for a month. I had to be fed intravenously. I couldn’t talk. Multiple classes came to see me. I had to go to the bathroom with three people. I moved to the 11th floor. On the 11th floor, I was treated for paraneoplastic anti-tr syndrome. Even though degenerative is in the title of my illness, I think the degenerative part ended in March.
In early April 2013, I went to Good Shepherd/Penn Partners neurologic floor. It is an inpatient rehab facility. There I walked for the first time in two months. I also ate real food for the first time in a month, but I had to be fed. I also started massage with Shannon Ward, which I think helped. I still had trouble talking. They did what they could to rehabilitate me. When I first got a massage, I couldn’t roll over to my stomach. In time, I started to roll over.
In May 2013, I went home. On the ride home I noticed everyone walking. It was time I started rehabilitation on my own.
June was uneventful. If anything for me is uneventful. I also started a modified yoga with Jen Denis. Yoga seems to help.
In late July, I went to Magee’s Day Program. The day program is from 9am-3pm.
It is OT, PT, Speech pathology, and recreational therapy every day, once a day. You also go somewhere once a week, it helps you get reacquainted with the community. It was hard, but good.
In late August 2013, after surgery, they found Hodgkin’s Lymphoma. I was diagnosed with Stage 1A Hodgkin’s Lymphoma. I had surgery to take out the lymph nodes on the right side of my neck. I finally had the lymphoma I was waiting for.
In September and October 2013, I went through chemotherapy. I also got a puppy and named him Will Smith. I called him Will Smith because of the ears. I rescued him at STAR (Street Tails Animal Rescue) on Liberties Walk. For the most part, chemotherapy was easy. I only partially lost my hair.
In October and November 2013, I went through radiation therapy. Radiation was OK, but it made me weak. I hated the fact that they had to strap my head down. They had to strap my head down because of the tremors.
In December 2013, I started at Magee’s Day Program again. It was hard again. I started to walk further, stand longer, and speak clearer.
In January 2014, I just finished Magee’s Day Program and will utilize their outpatient services.
Now I feed myself (with a bowl and spoon), do everything in the bathroom by myself, and transfer from my wheelchair to pretty much anywhere alone. At the moment, I am severely ataxic. And I also have mild tremors. I still have a far way to go. What keeps me is going is that I might get better or I will get better. At times I am afraid like everyone else would be, but that fear keeps me going. I try not to have any feelings. I hope to be done with the wheelchair and walker by the end of the year (2014). One of the hardest things for me is people equate speech with mental ability. The front half of my brain is all intact, I just have trouble talking.
I will update the diary once a week. Everything else I’ll update once a month.
By clicking on the words coordination, diary, handwriting, speech, typing, walking and contact. They will take you onto different pages
It Takes a Community 