CJD progressed extremely fast with Anne-Marie. Within one week of diagnosis, she was no longer able to speak. The following is a chronological (2009) outline of amm’s medical history regarding CJD.
–end of January 2009– amm, Charles and Grandma ‘Leen traveled to Vegas for a week and at the time amm said that she felt a bit off-balance.
-Friday, March 13 – Sunday, March 15– amm drove to Edmonton to visit KK and that weekend KK noticed a few things (amm spoke quicker, was off-balance a few times, chose different phrasing when she spoke), but amm realized these changes and attributed them to new heartburn medication. She decided to stop taking the medication until her next doctors appointment that was scheduled for the following Tuesday.
-Sunday, March 15– amm and Charles arrive home from Edmonton and Charles found that amm put away an alarm clock in the fridge. Charles also found amm’s toque and mitts put away under the bathroom sink. When he asked her about these things she did not remember doing them.
-Tuesday, March 17– amm sent Anth and KK emails filled with grammar and spelling mistakes, which are very unusual for her, but when confronted she did not recognize the errors. At her doctors appointment a CT scan was ordered but would take a few weeks to have the procedure.
-Wednesday, March 18– amm felt worse so Charles took her to emergency where a CT scan was performed and showed “dark spots”. She was urgently referred to a neurologist in Saskatoon, but after not hearing anything for two days, Charles drove her to emergency in Saskatoon where she was admitted to neurology on Friday, March 20. Testing wouldn’t begin until Monday.
-Saturday, March 21 and Sunday, March 22 – KK happened to be in Saskatoon and saw amm on Saturday and Sunday. amm could still move herself around, but needed an arm to guide her while walking. Her manner of speech was different – she was much more animated and aggressive with both her speaking and body language. She had little appetite. Her writing became large and almost child-like. She focused on being creative and came up with idea of documenting her experience so others can learn from this and have her story told.
-Monday, March 23 – The 1st EEG was performed and it was thought she may have been having seizures. Anti-seizure medication was administered and the MRI was performed in the afternoon.
-Tuesday, March 24 – The 2nd EEG performed but the results were similar to Monday’s results so seizures were ruled out. A lumbar puncture (spinal tap) was performed in the afternoon.
-Wednesday, March 25– The diagnosis of sporadic CJD was given around 6pm.
-Thursday, March 26– Anth, Julie & Madeleine and KK & Nick traveled to Saskatoon to be with amm. She took longer to speak and form her words and could no longer walk. She had also lost the ability to control her arms and feed herself.
-Friday, March 27– amm was sent to North Battleford by ambulance, as we were told there was nothing else to be done for her.
-Saturday, March 28– amm was still speaking, although slowly and she was no longer able to reposition herself in bed. She started to receive visitors and recognized every one and could recall specific memories and stories. Her thought process wasn’t affected, it was just her speech was limited and she was unable to completely express her responses.
-Sunday, March 29 – There was no real change.
-Monday, March 30 – There was no real change.
-Tuesday, March 31– amm took more time to form her words when speaking. Over the last 3 days she had over 70 visitors which was overwhelming but appreciated.
-Wednesday, April 1– amm slept most of the day and when she spoke it was soft and she did not speak often. Her muscle spasms occurred more often. This day was devoted to family only as she needed rest.
-Thursday, April 2– amm slept most of the day and hardly spoke – she only said a few words, even though she had many visitors.
Since Thursday, April 2, amm slept continuously for about 5 days, then awoke and attempted to speak and did say a few words and phrases over about another 4 or 5 days, and since then, she has returned to sleeping and has not been able to speak.
Each day we don’t know what to expect as the disease progresses. Some days she sleeps peacefully the entire day, while others she is awoken by muscle spasms throughout the day. Our priority now is to keep amm comfortable and have love and laughter always surrounding her, as well as have her favourite cd’s always rocking the Sony boom box.
-Friday, May 29 – amm succumbed to CJD with her family surrounding her.