I'm a 26 yo male in the Bay Area who has been experiencing increasing symptoms in the past two year (periodic, but intense neck/body/hand cramps, mild hand tremors, mild muscle weakening although I'm still healthy, able-bodied and active).

I've scoured the internet for communities of people living with KD and the only place I found for people with this disease is in this forum. While I would love to talk with anyone who can relate to what I'm experiencing, a lot of the posts I've seen on here are from people in their 50's with more advanced symptoms.

I was wondering if there is anyone in their 20's/ early 30's who is in this forum and who is open to talking? I'm down to chat with anyone in this forum in general, but it would be great to talk with someone whose early in their KD journey who wants to exchange stories and support.


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Aside from that, I wanted to say hello to you all! This disease is terrifying and I'm learning how to navigate all of this with grace and optimism. I don't know what the future holds, but I want to become an active participant in this forum when I can. Feel free to reach out if you need to talk

-Y

Have you confirmed the KD diagnoses with a genetic test?

BTW There is a KDA Facebook group that is more active than this forum. Doesn't work as well as this forum, but...

Hi Young, My name is Maurice I'm 66 I've been living with the effects of KD since my late 20's. I was and am very active. I participated in many sports in my youth including weight lifting and Tae Know Do. I'm an expert in many athletics. From the time KD started to effect my muscles until I was diagnosed was about ten years. It was horrible and confusing I was in incredible physical condition I could squat 450lbs. My muscles started to weaken I had all of the symptoms you listed and more. Five years into my decline I had stopped all athletics. Before I was finally diagnosed they thought I had ALS. I lived with that possibility for about a year until I had the DNA test. I'm very positive, a problem solver in my personal and professional life I found a doctor that was willing to support me and started to design a plan to manage KD. I have battled this foe ever since using every bit of knowledge I could find on KD and my experience in athletics and life and an indomitable spirit taught to me by many people along my journey.
Most important in my battle has been my mind and attitude. I never quit because KD will never quit. You are going to face some tough times but you can have a huge effect on how KD affects you. At 66 I have very advanced KD I have faced many challenges including many broken bones, including both hips four years ago, one in June the other in November after 6 months of rehab from the first break. I write this almost exactly 4 years since breaking my first hip. I put on over 15lbs of muscle in the four years my joints don't hurt anymore I fall les frequently and I'm crazy busy doing everything I can. I work 40hrs. per week weight lift 5 hrs. walk about 21000 steps with a cane and or walker and much more. I live a very productive life and so can you, you have an amazing advantage over my generation. You're access to an abundance to the Knowledge available is incredible. This isn't going to be easy but it's not what happens to you that determines the outcome it's what you do about it. Please contact me my entire story could fill a book. I am happy and willing to share any knowledge and experience I have acquired with you and anyone else interested.
Everyone is unique and KD progresses at a different rate and severity in each of us I have very fortunate but I actively push the medical system to hear me, it's your disease and it's going to mainly up to you to manage it. I've been monitored by some of the best neurologists in Canada.
and continuously by my doctor. I get frequent tests of all kinds to choose my path as safely as possible, my nature is to go hard you have to put in the work.
Sincerely Maurice

Maurice, I'd love to hear more of your story. I am impressed you squatted 450 lbs with KD genetics. I lifted weights in my teens and 20s and while I gained muscle and strength I bulked up much less than my workout partners. I have been weight training again for the past several years, currently 60, and was pleasantly surprised I can once again build strength. Although most of my gains came in the first year of resuming weight training. Since then during periods when all goes perfectly I can make very slow progress adding 0.25 lbs to my lifts every week or two for a few months. But then an injury or catching a cold or something else disrupts my routine and I lose months of progress. Despite the struggle to make gains and my feebleness compared to other men of my age I am pleased to be doing as well as I am and to not be declining as fast as most men my age. I think I have gained a little mental toughness and believe I have plenty of room for improvement there which hopefully offsets what aging does to my body for quite some time to come.

Todd, my weight training experience in my youth and now mirror yours. In my teens I had great coaching. I was very fortunate to have trained at a world class power lifting gym. I use many techniques learned there and some new ones I found online check out Jeff Cavaliere. He has lots of free videos. I get great advice there on form to limit injuries. To gain muscle and strength you have to push your limits. I use very light weight I'm very weak. Bench press 25lbs, Shoulder press 15lbs. dumbbell curls 5lbs. I do about 12 sets per body part usually two to three different exercises for each, I do compound and isolation exercises. I always lifted for strength and athletic function not body building. My diet is just as important I eat a very strict high nutrition, lots of veggies and fruit, low sugar, high protein foods. Creatine, Protein powder, L-Carnitine, Lecithin-(choline), Sapling Algae based Calcium with complimentary vitamins, and make sure through blood tests that all essential minerals and vitamins are in adequate supply for my body to use. I have to get lots of rest between work outs I have heavy days and light days. I do HIT punching 3 times a week for 30 mins sitting.
I do about 1200 punches per session. I also do many other exercises each week. I would be willing to connect with you directly. I would love to know your program and see what your results and challenges you have. I have no connection with any one else with KD. Exercises with KD can be so frustrating. Every morning I wake up with a stifling sense of lethargy. Just trying to stand up first time of the day takes all my might. My workouts start the same but once I get going I'm amazed at what I can do. For me if I didn't walk, workout and eat right I would have been in a wheel chair years ago. I would like to see a workout group or something like that. If you want to contact me directly my email is rrmmgg427@gmail.com