Strides for CJD 2023

Looking back now after 8.5 years, we are so grateful to have found the CJD Foundation as they helped us sort out what we now know to be one of the most devastating diseases with no known cure, and today, sadly, most of the public still do not know what CJD is or how it affects not only the person who has it, but their entire network of family and friends in a profound way.

Here's our mom's story starting in Nov. 2015.

At the time, my mom was 72, she worked part-time, loved working out, had 2 great-grandchildren (and a 3rd on the way), 4 grandchildren, 3 children, a partner of 30 years, and a great ex-husband, whom she was very close with for many years. My mom and I lived together, so one day when she came home from work, she was complaining about how she couldn't seem to type at work the same, she figured it was her keyboard, and ordered a new one. This is when it all started. I pretty much didn't pay much attention to that complaint until two weeks had gone by and she said she couldn't type any longer and that she started going to doctor appointments to find out what was going on.

Ironically, around the same time, her granddaughter was due for her first child and at the baby shower, my mom didn't act or look quite like she used to, this was 3 weeks after the first sign. That evening, she slept for a large amount of the day and night and was freezing, and couldn't stay warm. We knew something more serious was going on. After weeks of doctor appointments and into NYC to specialists, we had no diagnosis, and it was Christmas time. At this point, mom was in and out of the emergency room a few times as she had so many different things going on, one was her right arm jerking and the other was that she couldn't sleep, so there were alot of ideas of what was wrong, MS, Alzheimer's, movement diseases, neurological diseases, but not one doctor could provide a solid diagnosis yet.

Finally, after going into NYC to Columbia University to see a specialist on movement disorders, she was disagnosed by him with a mental disorder. We were perplexed after waiting 6 weeks to see this doctor. We had hope. This was New Year's eve, and unfortunately, she ended up in the hospital on January 2, never to come home again. She had gone downhill fast, couldn't walk, could barely talk, her eyes were strange, like she was almost blind. She couldn't feed herself, and needed round the clock care.

We received a different diagnosis, CJD, from a local doctor in Morristown Memorial Hospital. At this point, she didn't know, we don't think, what was going on, so she lay in the hospital medicated. Hospice finally took over on January 17 or so and on January 22, she passed peacefully with her family around her at the hospital.

The day before her death, her 3rd grandchild, Chelsea, was born in the same hospital, downstairs, and it was a surreal moment in our lives. Our mom was full of life, she just couldn't wait to meet Chelsea for months, and so while they didn't meet in person, they are forever connected.

I found the CJD Foundation by looking online and called them up, and got some guidance on many things from obtaining help to get an autopsy performed of her brain to confirm she indeed, had CJD, and it was sporadic. We wanted to know so we could, as a family, know if anyone carried the gene, if it was the genetic type. Over the next few weeks we all learned alot about this dreadful disease.

My mom was the glue to our family, always woke up on the right-side of the bed, she was always happy, willing to help anyone and had an infectious laugh. She loved to travel, loved Adam Lambert, rock music and gardening. Although, the most important thing to her was spending time with her grandchildren and of course the great-grandchildren. She spent alot of time with them, babysitting, and doing crafts with them, etc.

She was also my best friend, and I was blessed to have had her in my life for 50 years, but not long enough and to see her get so ill and so fast, you just didn't have time to process what was happening. Not many doctors knowing what was wrong with her, thankfully, she didn't have to suffer to too many months.

My family and I have been involved in the yearly CJD walk since 2016, when the first one came to Morris County, which was on my mom's birthday in the next street from where we lived.. We participate by raising funds, having family and friends attend when they can and this year by getting the donations for our awesome raffle gifts. It's always a nice morning the day of the walk, and we look forward to it as it keeps her story alive.

Thank you for your interest in our story of Mom, aka Gigi !!