I’m new here. My name is Nick, and I’m newly diagnosed with Kennedy’s. A little back story about me. I’m a male and I’m 33 years old. My mother’s side of the family has known about this disease for quite a few years as I had two uncles with it (one passed away from unrelated issues) as well as my mother that was tested a confirmed carrier when I was 21 years old.
My own story, I have been feeling weaker as the years have passed, especially within the last 5 years. On my dream vacation in South Korea last year, I found myself struggling to do some of the standard traveling, especially with the numerous staircases that they have as they do not have the number of escalators hat we have here in the US. After that vacation, it left me thinking that it was finally time to have myself tested. Since my mother was a confirmed carrier, I always had this thought in the back of my mind that it was inevitable for me. I got referred to a geneticist here at the University of Minnesota, and saw them in December. In January of 2020, I was informed that my results were positive for it.
I feel as though I accepted it well at first. My family has known of this, I’ve seen what my uncles have been through and I’ve been mentally preparing for this for over a decade since my mother’s confirmation as a carrier. I’ve received a lot of support from friends and family. But as this year has gone on, and I try to live a normal life, I keep seeing myself struggling more and more and my ability to cope with this is starting to get more difficult with time.
I guess what I am hoping for is words of advice from those of you that have been living with this longer on how you have coped with it, and in general just wanting to know that things will be ok as time goes on.
Thanks for anything you can tell me and for listening to my story.
Hello Nick and welcome to the forum. The general answer to your question is: Yes, things will be ok. You have already begun the process of learning by asking questions here.
I suggest that you look at the General Discussion section of this forum; lots of excellent information there. Here's the link. http://kennedysdisease.groupee...s/a/frm/f/8581031121
Another excellent source is the Kennedy's Disease blog. https://kennedysdisease.blogspot.com/
Finally, you should plan to go to the annual conference of the Kennedy's Disease Assocation. It's absolutely terrific to meet other men who have KD and learn from them. This year (2020) the conference is virtual, so there's not even any need to travel. https://kennedysdisease.org/li...ucational-symposiums
Please feel free to ask your questions as they come up -- we will do our best to help.
Forgot to mention that one of the best articles on the KD blog is the one entitled: The Natural History of Kennedy's Disease.
Location: Chicago, IL
Hi Nick, welcome to the club!
I second all of Dan's great suggestions.
I'd add that KD has highly variable progression. It can come on early or late and can accelerate or slow down. The CAG repeat count is only weakly correlated to disease severity suggesting other factors are important. I've found much of what I previously attributed to KD getting better as I've discovered and addressed things which appear to have been contributing to my decline. For example, I had several key micronutrient deficiencies such as vitamins B12 and D and low on minerals magnesium and zinc. I was overfat despite not being overweight due to muscle loss with the beginnings of fatty liver disease. I was prediabetic with many symptoms of full blown type 2 diabetes. I had insomnia and chronic stress issues. I had an unknown long term periodontal infection. There was a mold problem in my home. And most recently I learned I had metals poisonings, severe for lead and mild for cadmium, arsenic and tin. Each time I've fixed one of those things I've had an improvement in symptoms I associate with KD such as weakness, tremors, cramps and choking. Each fix motivates more effort to improve health and fitness. My CAG count is 50 and I had a brutal decline in my 40s but now at 55 I hardly feel diseased. I am much weaker than normal for a man of my age but I'm slowly regaining lost strength and muscle and gaining confidence in a long bright future.
With a bit of luck and effort you can avoid the pitfalls of which I'm digging myself out.
Hi Nick, welcome. Life's still good. I'm 66, no wheelchair nor pneumonia so far. While everyone's experience is different, I was fortunate enough to live my life as I choose (for better or worse) and raise a family. If I could send a message to myself at your age, it would be what Dan said: It will be OK.
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614