NICK SUDAR
My dad, Nick Sudar, died 4-8-79 at the age of 64 from CJD as mentioned as the cause of death on his death certificate. He was sick for approximately 4 months once the symptoms started. I was 23 not living at home any more and had 3 younger brothers - the youngest being 16. My mom was 54 at the time.
He started having symptoms in the beginning of January, 1979. First, his eye sight started changing - he couldn't read the paper well or see playing cards. He had 3 enjoyments: driving his car, playing cards and reading and couldn't enjoy any of those things. I suggested perhaps he had a minor stroke since that can affect your vision. He went to his cardiologist (he had open heart surgery in February, 1976) who confirmed a stroke. That wasn't good enough for my dad - he kept saying I think there is something else wrong. We thought he was being paranoid! He convinced his doctor to get him an appointment at the Mayo Clinic in Rochester, MN.
He was there for approximately 5 days. They confirmed he had a stroke so he was satisfied. While there, he asked the doctor if he could have some broken cartilidge repaired in his nose since he was never able to breathe correctly since he was a kid. The doctor did the surgery and said to come back in a "few" weeks to have the packing from the surgery removed from his nose. My mom accompanied him to the Mayo Clinic for this first visit. The first night they were there, they went out to dinner and my dad ordered a beer. This was totally out of character since he had not drank in 22 years. He was a reformed alcoholic and stopped drinking in 1957. He owned 2 taverns all those years and never touched a drop. My mother, who had known him when he was drinking, was horrified as he was a serious alcoholic. This was when she first realized that something was seriously wrong.
They returned home and within a "few" weeks he went totally blind, became overly irratible and started acting unusual. Again, my mom caught him with a bottle of Scotch. Another time she walked into the room and he was acting like he was smoking (he gave it up in 1966) but he had no cigarettes or matches. It was so scary. She walked into their bedroom one day and he was shuffling through a drawer looking for something. It happened to be where he kept his hand gun. My cousin, who was quite close to my dad, called my mom and said my dad had told him, "she's foxy - she hid my gun on me." Again, totally out of character - my dad loved his family too much to ever take his own life! My cousin had suggested she hide the gun before this happened. All this time he kept asking us if we knew something other than what the doctor had diagnosed. He kept saying, "I know there is something else wrong with me.." but we never imagined what would happen. He also would be fine one minute and then get really strange the next.
When it was time to return to the Mayo Clinic, he could no longer sit very well as well as a host of other problems. Another cousin, who had a motor home, came up from Illinois (we're in Wisconsin) to transport him since there was no way he could sit that whole time. His sisters (my aunts) also came up with my cousin and rode along and he kept wondering why. At that point, he said, "I know something is wrong and you're all keeping it from me." But we really didn't know! It was the last time I saw my dad alive.
When they arrived at the Mayo Clinic, the same nurse that had helped him last time was explaining all the buttons, "this is the call button, this is for the TV, etc..." My mom met her in the hallway and said, "you know he is blind now" (my dad acted like he wasn't but it was obvious). The nurse was flabbergasted and immediately called in the ENT that had done the surgery on my dad's nose. From that point on, doctors were constantly in and out of his room asking questions, testing, doing CAT scans of his brain, etc... They were totally puzzled. They even thought that maybe the Lupus he had on his face had somehow attacked his brain but eventually ruled it out. At that time they said you could not contract this virus through blood. But my dad lost his right hand when he was 20 and had transfusions at that time as well as when he had open heart surgery. He also was a meat & potatoes man - he loved beef, pork, chicken, lamb, you name it! However, it was progressing so rapidly that they were able to tell by the CAT scans. Also, they'd ask him to remember simple things like newspaper, airport, etc... They would leave the room for 15 minutes and return to ask him to repeat what he was to remember. He'd struggle and say, "Chicago Tribune, Mitchell Field.." but he just couldn't remember. Please keep in mind, this was a man, sharp as a whip with a memory like a hawk.
My mom would walk around the bed and he would yell at her and say, "Where in the hell have you been the last few days? I 've been laying here and you don't even care!" Again, totally out of character!!!! When we'd call him, my mom said he couldn't understand sentences. I would ask why and she said no one knew - they were still trying to find out what the problem was.
There were so many other problems. Finally, a week before he died, they diagnosed CJD and told my mom she had to take him home - that there was no cure and nothing they could do.
She had my dad flown home in an air ambulance because by then he was totally dependent: couldn't talk, walk or eat. He was totally bed ridden and my mom found a great skilled care facility since there was no way she could take care of him at home. He was only there 2 days when he passed away. After all these years I still miss him terribly and can't believe that he died from this terrible disease.
We never got to know our dad. When he died, none of us were married. He now has 9 grandchildren which he would have spoiled rotten. He loved children. We are all very successful and have wonderful spouses. He would be enjoying so much now. My mom joined him in February, 1992 from diabetes complications. So at age 42, I have no parents and haven't for some time. My mom was my best friend - only second to my husband. I can only hope they find out what causes CJD.
Ironically 2 things happened after my dad's death. My mom moved about 6 months after my dad died. The neighbor across the hall from her passed away from CJD a month after she moved in (What do they say? It affects 2 in a million people???). Secondly, I have been on the National Bone Marrow Donor list for 10 years. Approximately 3 years ago, I was contacted by the Blood Center and asked to donate platlets for a 14 year old boy at Children's Hospital in Milwaukee. They had to ask me the standard questions: Have you ever had hepatitis? Hypertension? Heart problems? Then they asked me if anyone in my family had died from CJD - I was totally shocked! I asked the nurse why they would ask that and she said, "It's a new question on the survey but I've never had anyone answer yes to that question!" I was told by the supervisor that they would have to remove my name off the list and I, including my children, their children, etc... can never donate blood again. I really feel sad for the parents of that 14 year old boy. If I would have been a match, I wouldn't have been able to help him and I doubt if they would have told the parents there was a match somewhere.
I was robbed of my dad - hopefully this story will help someone out there going through this. My thoughts and prayers are with you.
Sherry
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