All of us have choices. I made a choice when I was first diagnosed to participate in a stem cell project which involved several of our most prestigious medical facilities. I think my decision was the right one not only for myself but my family and others with HD. Did I really do anything, no, I just stuck my arm out. The purpose of the study was to use human skin cells to regenerate stem cells atby mikee - Huntington's Disease Support Center
That's fantastic news. Mikeby mikee - Huntington's Disease Support Center
Sounds good. Keep up the good work by not smoking. Unfortunately I picked it back up years ago. Mikeby mikee - Huntington's Disease Support Center
It varies so much. I'm CAG 36 and may have never known except for a head injury. No history complicates a diagnosis of not only HD but anything else that can be have similar symptoms. I ask to test again at Mayo and it was the same. My Neuro told he would but a lot of improvements had been made and mistakes were rare if at all. Barb's information is actually reassuring to me since we are bothby mikee - Huntington's Disease Support Center
Hey Barb, I'm sorry I haven't gotten back to you sooner. It's not difficult with HD to turn things upside down but I managed to go see my first grandchild recently. I have been somewhat distracted (which is a good thing). To answer your question it has never gone completely away. Why don't you send me a PM before I spill out a bunch of stuff or give me a call so I can try to understand theby mikee - Huntington's Disease Support Center
Good advice already. Don't feel bad, my son wants to test anonymously but we can't find anyone or a packet to do so. It's much easier for me to say since there was no known HD until me in our family; don't be afraid to be your own advocate. This was my situation. Years of persistence paid off. If you think you are symptomatic take steps first to take care of you family financially. I forby mikee - Huntington's Disease Support Center
Lorrie, I only read a couple of the post so please consider that in my reply. You are ultimately the one person who can make the decision to have this child. I am not pressuring either way. You are the only one who can make the decision. In answer to your question, yes, I would have chosen to be born. In 57 years I have met a great many people. Overcome a great many hardships that have madeby mikee - Huntington's Disease Support Center
Go for it Mare. I need to follow suit.....good luck. Mikeby mikee - Huntington's Disease Support Center
The jury is still out but it could be male pattern baldness???by mikee - Huntington's Disease Support Center
Sorry this was meant as a PM. Mikeby mikee - Huntington's Disease Support Center
Welcome to our world, sorry you have to join in. You have gotten some great advice so far and I suggest you be proactive in your approach. With that said, listen to the experience of others who have walked this windy path. Keep posting and asking. Someone will respond. If you can salvage walking off the job it would be in your best interest. Perhaps something could be worked out so you couldby mikee - Huntington's Disease Support Center
Patty is correct. Testing is the only way to know in conjunction with a Neurologist. Curious though; how did you come upon HD as the basis of the movements. It is a possibility to be the first although it is rare. It does start somewhere. Good Luck, Mikeby mikee - Huntington's Disease Support Center
Hi all, I wanted to share something with you and get some of your feedback. As some may know I had two breaks (compression fractures) in my spine around January of this year. Last week I was cleared by the Ortho but ever since it happened he and my family Doc couldn't understand why at my age I could do this. If I were a female it would have been different. I had to push a little to get my Doby mikee - Huntington's Disease Support Center
Now I know why Will is so special to us all!!!by mikee - Huntington's Disease Support Center
Congratulations to you as well!!! Hope they are doing well. Yes, it's wonderful. Thanks Chicago..... Mikeby mikee - Huntington's Disease Support Center
I can believe I forgot.....Our family was blessed last week with a 7 lb 10 oz boy born to my oldest son and his wife. Looking forward to seeing him soon. Just had to share...... Mikeby mikee - Huntington's Disease Support Center
Sure. It can be something else. I do know the supplemental oxygen helped but my gait issues did not disappear. Mikeby mikee - Huntington's Disease Support Center
Barb is right on the money. I can tell you that without sleep/naps you will become exhausted. Exhaustion comes on easily, stress brings on exhaustion and more exaggerated symptoms including irritability, cognitive decline and depression. Overstimulation also becomes a bigger issue. I have been encouraged to be active but the fatigue is always there. It just gets worse with activity. Stress just aby mikee - Huntington's Disease Support Center
In response to the chorea issue I just want to say, "all Doctors are not created equal". I mean this in the sense that all are not responsive to your problems equally. I've had to consider many issues before being diagnosed. I have come to some conclusions about these experiences and without physicians being totally up front about what they are thinking I had to make some assumptions onby mikee - Huntington's Disease Support Center
That young man has a huge weight on his shoulders. If he has read anything about HD he will know he too is at risk. If you need a way to break the ice, I would suggest getting some printed information about HD. Let him know you hope he didn't mind you looked into it since you weren't familiar and if you could be of help you would know a little about the disease. Then maybe you could ask himby mikee - Huntington's Disease Support Center
I have issues with not eating. Eating more often during the day helps. All the things you mentioned get worse on an empty stomach and cereal doesn't last very long. Do you mind sharing your cag? Mikeby mikee - Huntington's Disease Support Center
Don't know about stepping on heels. Gait problems, wide and sometime stiff gait, wobbling when still, walking into things, scissor gait etc. all go along with HD. Mikeeby mikee - Huntington's Disease Support Center
Keep posting Dusty. It's great you aren't giving in.... Mikeby mikee - Huntington's Disease Support Center
Hooray for your Dad. That had to be an especially great day for you and your family. Mikeby mikee - Huntington's Disease Support Center
Calm is good. Thinking about the situation as you have gives you some control over where it will go. I am not even sure at times what chorea really is myself. You certainly don't get much from the Doctors about what to be aware of and I think that is in part due to the varying symptoms we experience. ( although I have no way of knowing). If not for people as yourself and this forum I would know lby mikee - Huntington's Disease Support Center
For what it is worth, my wife is a social worker and loves her job and clients. Although professional (can't think of the word) doesn't allow them to disclose information, I have learned a few things about medication, albeit minimal by listening to her and co-workers. Meds and dosage work for a time and need adjustment. Medications must be stayed on top of and benefit vs. outcome weighed at allby mikee - Huntington's Disease Support Center
That was an interesting article. Thanks for sharing. Too bad we have to wait so long and so many pass before these things can be implemented. Mikeby mikee - Huntington's Disease Support Center