Kennedys Disease Community
Newbie Introduction

This topic can be found at:
https://kennedysdisease.groupee.net/eve/forums/a/tpc/f/8581031121/m/4081010342

08-21-2007, 10:44 AM
danylDET
Newbie Introduction
Hello: My name is Daniel, I was diagnosed about a year go. Turned 30 this past April. I am currently seeing Doctor Robert Layzer at UCSF and taking Dutasteride.

Thought I'd join the board to gain more information. I have better days than others, does anyone else experience this?
08-22-2007, 09:54 AM
Cam
Hi Daniel, welcome to the group. I definitely have good days and not so very good days. With me, it is mostly related to how active I was the day(s) before. While I can still do most normal activities, if I don't stop at the first signs of "tiredness", the next day goes downhill proportionately to how long I press on. Sometimes the activity is worth a day or two of "not so very good days".
08-23-2007, 03:58 PM
danylDET
I'll definitly have to keep that in mind. I can do most activities relativly fine. Walking has become my biggest struggle lately. Doesn't help that my current home has two flights of stairs. Thanks for the welcome!
08-24-2007, 01:35 PM
Bruce
Welcome Daniel. I am one of the older guys and have been living with longer than you have been around. Yes, early on KD has a tendency to rear its ugly head whenever you over-do something. Mine was playing racquetball or tennis, hiking the mountains, going too long on the treadmill, or when I was experiencing high levels of stress.

The two pieces of advice I can give is to (1) "listen to your body", and, (2) "regular and light exercise is extremely good for you and your motor neurons."

With (1), if you have over-done and you are paying the price, consider what you did and what you need to consider the next time. Rest the body before trying to push yourself again.

With (2), doctors now agree that stimulation of the motor neurons is important. You will keep your muscles working longer by developing a 'smart exerise' program and keeping with it. If you experience pain or extreme fatigue during or after an exercise program, re-evaluate your program, but do continue to exercise regularly. There is an exercise guide on the web site that might help you consider positive exercises that someone as young as you can modify to meet your current needs.

Good luck and stay in touch.
Bruce
08-24-2007, 02:21 PM
danylDET
Thanks for all the advice. This is exctly the type of info I was hoping to get from this board!