Angelo Leo Carlini

Angelo Leo Carlini, who had a brainstem stroke in December 1999, shares his experiences so far in diary form. Stroke Survivors will related to many of his struggles. We appreciate Angelo sharing this information with our readers and wish him luck in his continuing recovery.

MEMOIRS OF A STROKE

I suffered a brainstem stroke on the 23rd of December 1999. In this writing he shares the experience of the first 3 years post stroke.

It was a bleed directly to the brain as a result of a weak blood vessel in my head and heightened blood pressure. I could feel it coming on as most of my energy drained and I slumped to the floor; I could not recover. My wife thought I was dying and she called our younger son, Aaron who lived about a mile away. Prior to this experience I did my "morning constitution" regimen: had already taken my daily shower and had just finished shaving. It was just after 6am. Someone called 911 and the emergency team was there shortly. I fought not to go to the hospital, grabbing the door jamb. But they managed to get me out to the ambulance.

I should have died (more than 60% do) but my wife Deanna would not agree to remove my life support systems. The hospital I was first taken to did not have the necessary skills and equipment. The wait at the first hospital was about 7 hours. I thought I was going to be operated on, but the only operation I had was a tracheoscomy to insure that I did not choke on my own fluids. Although probably induced by the hospital medications (but possibly a result of the stroke) I was completely "out of it". I can remember thinking that I was at the top of the world and I was above the canopy that covers the sky. I could "flip" the "icons" contained in the canopy, and the reality of the world changed. I was in a one-person room. The nurses were very professional and interested.

When I started physical therapy, Deanna was told that we would no longer be able to continue our insurance if we remained in Utah. So we flew to San Francisco, and then by ambulance to Vallejo. At this third location, I was still "out of it" and was placed in a four-person room. I participated in physical, speech, and occupational therapy. About an hour per day I was spent in physical therapy. Therapists were young people (mostly German) from all over the world. They were excellent and very committed. I had some difficulty in swallowing. Finally, I had to undergo some x-ray testing to watch me swallow.

On my first weekend pass I went to where Deanna was staying. Aaron also came. She told him that she had some shrimp in the freezer; and she spelled it out (s-h-r-i-m-p) as if I were a child who could not spell; but I knew exactly what she had in the freezer and thanks to a food processor, I got some ground-up shrimp. Another experience during that same period was a ramp built by our son-in-law, Ryan, which was a bit too steep. Deanna tried wheeling Ryan up the ramp successfully, but I am quite a bit heavier; so, in the rain, Deanna attempted to wheel me down the ramp to the car to go to church. She got me successfully to the bottom (rather quickly). At the bottom, the wheelchair tipped over, dumping me out onto the wet concrete. When I got out of the car at the church, I had lost so much weight that my pants fell down around my ankles. Thank god, no one saw me except Deanna and the missionaries who came out to wheel me to the entry.

The following was recorded at San Diego, 15 May 2002. Since leaving the "rehab" center at Vallejo, California and returning to Utah, I have experienced mouth sensations, which feel like my mouth is re-forming. I can taste with all parts of my mouth, not just my tongue. My left eye still looks across the line of sight of my right eye. Glasses (with a prism left lens), partially correct that.

What frightens me most is my perception of reality vs. non-reality. Things, which I expect to be, often "move" from non-being to actuality. This is the case with reading; those words, which I do not expect, "change" to become those, which I do expect. When I look at anything, I'm not sure if I'm seeing reality or what I expect to see.

Sometime in March 2000, I was released from Vallejo. We spent the next 6 weeks in Grass Valley, California at the home of our daughter, Julia and her husband, Ryan and their children, Michelle, Bradley, Jessica and Julianna. I had the services of a "home-visit" speech therapist, a "home-visit" physical therapist and a "home-visit" occupational therapist. I made some small amount of progress during this time. One day, I went boating and fishing with our son-in-law's brother. I was quite frightened that I might fall into the lake.

Deanna did not pay Julia for our stay, but she was generous in other ways. She bought Julie and Ryan a new hide-a-bed couch and two new dressers; also, she bought a good deal of the food and did much of the cooking. She was also generous with the children. I took us out to dinner for Julie's birthday. We have since given our daughter and son-in-law our electric alternator (after paying-off their electric bill). So, in my mind, we did not "sponge" off of them; I wish we could have done more.

Since coming home, more of my neurons have died (I guess) because of the mouth sensations (described earlier). I have made some definite improvement as I can now talk and with great caution walk. Although my short-term memory is quite poor, my mind seems to be returning.