A Lifetime of Yesterday's Update 10/15/24 Tremor

On Multiple Sclerosis - My First Tremor

Situation:

I've had my first Tremor from my fight with Primary Progressive Multiple Sclerosis (PPMS). I am suffering from this rare form of Multiple Sclerosis (MS). Of the three million people who have MS, fifteen percent (450,000) have this type, and I am one of them. There is only one medication to treat people who have this degrading form of MS, Ocrevus. I have been on this infused drug for two years with good results, which means my MS has not progressed. There is no cure; winning for me is not getting worse. 

ME: I was standing in the shower. I had two of the four shower heads pounding warm water on my face. I had soap everywhere and held onto the grab bar to stand upright. When I got my MS diagnosis, they told me to be very careful, mainly when I was in the shower, because it's slippery and may cause me to fall. Falling for me is worse than someone who isn't sick. A slight knock on my head can have grave consequences for me. Head and spine injuries of any kind can kill me or make my condition worse. I am disabled already, and I don't need any more to deal with. So, I'm standing there holding onto the grab bar with one hand and soaping myself with the other. All is copasetic. I always have the music playing in our bathroom with my Alexa. My left arm started to fidget and shake, something new for me. The hot water kept pounding on me. My left leg started shaking.

Them: The man stood in the shower, water pouring down on him from different angles. It must have been hot as steam rose, filling the large shower room with wet, white smoke. We had a murky view of him. He was covered entirely with soap and held onto the bar with one hand. The bar was under the stupid window they put in. All you could see through it were trees.

Complication

ME: The shaking became violent on my left side. I slid off the grab bar and fell to the floor. I started yelling for Sue to help me. The fucking music was so loud I couldn't scream over it. I tried reaching for the grab bar and yelled at Alexa to shut the music off, but she couldn't hear me. My words, warped as they were, couldn't reach her. Instead, they were absorbed in the ceiling of the shower. We have an oversized window in the bathroom, which starts at five feet and runs up to the ceiling. It's probably too big, but it can't be seen through unless you fly above our house. The back of the bathroom faces a tree line. We had the room redesigned and built a couple of years ago. We are sure that even if a drone flew over our house with a camera, we don't offer much for anyone to see anymore anyway.

Them: He was lying on the floor of the shower. The water was raining down from the two shower heads six feet above. His body shook on his left side, and his right hand flapped on the tile floor, simultaneously making a thud and splashing sound. He seemed to be mouthing unintelligible words, indicating that he was in some distress. Probably drunk again." "I don't think so; I heard he quit drinking. I'm sure he'll flood the basement; thank God it's their house this time." 

Increasing symptoms and fear

ME: I was on the tile floor with water on my face. Some of the drops hit my eyes, making it difficult to see. I continued screaming for Sue in words intelligible to me in my head, but I didn't think they were clear to Sue. The music was loud, but she kept saying, "What's wrong with you? I don't understand you!"

Them: The guy on the shower floor looked about fifty and needed to be in better shape. We knew he was much older, 62. He looked so much younger than that. He was shaking more as time passed on the floor, trying like hell to get up. The grab bar was too high for him. It would have been hard to grab with his left side shaking so much. It would never have been stable enough for him to pull himself up anyway. 

Urgency and help

ME: "I don't know," my head was wobbling rapidly back and forth. I had attempted to raise it higher, thinking I would try to get up. Instead, I rested it on the tile and looked up to the right and towards the window. Sue turned on the fan and peered in at me. "What do you want me to do?" I didn't have an answer. I looked towards the window and saw a few puffy clouds with a blue sky behind them, filling the entirety of the glass from my view. I saw some steam rise to the fan. 

Them: He appeared to be yelling for someone when the music died down near the end of a song, which made his words more accessible to hear but not quite understandable. "He always played the music too loud, not sure why." He cried, "Sue, help!" We saw her rush into the back of the bathroom. "You drove him behind a wall of music." His wife, Sue, approached the walk-in shower and looked through the misty smoke throughout the bathroom. "How long have you been there?" She yelled to him. "What happened?" he just laid there, shaking, which seemed to be getting worse; about 10 minutes passed, and he wasn't getting any better or closer to standing up. 

Help arrives; what to do?

ME: Sue grabbed a towel off the hook on the wall and walked into the shower, holding it up with one hand while turning off the water. She bent down and forced the hand with the towel under my head to meet with her other hand to pull it through. The towel formed a sling around my shaking head, which I used to dry my face. "Let's try to get you on your feet," she said. I was shaking but felt I only needed to go up enough to grab the bar with my right hand, which wasn't shaking much. My hand had flapped for a few minutes on the floor but was calming now.

Them: "She got him to his feet, but he was wobbly." He grabbed the bar with both hands and appeared stable as she held him by the waist. The water was off, and he seemed to be trying to look out the window and up to the ceiling. "I don't think he could see; I read where Multiple Sclerosis can make you blind from optical neuritis."

Me: Sue got me up on my feet, and it became hard to see as I grabbed the bar with both hands. My vision started to tunnel and get dark from the outside in. I had this happen many times at the same time as I had a migraine. While I didn't have a full migraine yet, I was getting a building headache. "I can't see well, Sue," I said. No sooner were the words out of my mouth when I started to experience lightning-like flashes in my dimming site. Yellow, red, and green flashes alighted the darkening sky of my sight. I knew I needed to get to the bed and try to sleep. 

Them: She carried him to the bed. "He is not doing well; she should call 911." He was unsteady but getting closer to the bed. He climbed in after she pulled down the sheets with one hand and had another on his shoulder. "If he goes to sleep, he may never wake up."

It's over.

Me: Sue got me to the bed, and I climbed in; I put my head on the pillow and closed my eyes. My head was pounding; lights were flashing. My right hand started tapping lightly on the bed. "Just let me sleep." "OK, I will bring up some water for you." The whole episode had been about forty-five minutes; we would estimate later that evening. I woke up, and everything was fine; it was gone and over. 

Now what?

That is always how the headaches and flashes go, but the seizure episode was new for me. I called my neuro and explained the situation. The doctor had me come in a few days later and meet with another neuro who specialized in Epilepsy. He put me through many hours of testing and determined I did not have Epilepsy. Next, the two doctors collaborated and agreed together after reviewing the tests and description that I did not have Epilepsy. I had experienced tremors from my Primary Progressive Multiple Sclerosis, which was all I got. 

Recommendation

My type of MS is a mind fuck that doesn't go away. My best outcome is to slow the decline; I will never get better unless a pharmaceutical company discovers a treatment or a cure. I have accepted that, and Sue has, too. We are rearranging our retirement expectations as some of the things we wanted to do have to come off the list. Travel will move from extensive to limited as I cannot walk for much distance without assistance. We wanted to stay in the home we put so much time, money, effort, tears, and love into, but my prognosis lends itself to a one-story house. We will adjust; we are close to our sons, so that will be where we will spend more time—duck, boys.

Peace,

Chris