I respect and admire you so much. These videos help many people feel less alone and encourage us to find the humour and the joy in our own journeys. Thank you for being you. Wishing you all the best my friend.
so glad you were able to exit the drug that caused you difficulty...by the way, you are still as articulate and clever a conversationalist as ever. I totally agree that if you have to endure altered reality states of thoughts...you deserve something positive! I once was sure that the Beatles visited me at my high school while I was under the influence of gas at a dental office. I can tell you that I have never been happier than while in that belief state. I am so glad your team takes your complaints no matter how bothersome to you....seriously. And help you reframe *as common theme* with HD plus help tamp down perseveration (a word I feel very accomplished to correctly pronounce.) YOU are a compassionate and charming guy....glad you feel the same about your docs. Love to Emily. Someone living with HD will benefit from this post!~!
Thank you so much for being so open about your HD. My family has it also and most what you see about HD scares a person more rather than being informative. I’ve learned so many new things from you and the uplifting way you present it is amazing. HD is not fun in any way, but the new information can help families try new things. Again, thank you and continue to “find the funny “. I will be one of your cheerleaders in the side!!!!
Hi. I’m so glad I found your channel. Me and my gf just found out that she has Huttington. It is a devastating news for us. Let’s hope there’s a cure in the near future. GL✌🏻✌🏻
Your videos are so fun to watch. My mother has alzheimer's and we also frequently joke about her/our forgetfulness. Sometimes it's all you can do. I am now caregiver for my husband, diagnosed with HD two years ago at the age of 62 with a CAG 41. His father was not diagnosed (they said "Alzheimer's, or something like it" but I knew it was not ALZ and just thought it was some form of senile dementia). Looking back, I am hopeful that my husband's progression is similar to his father's, as he was only bed-bound after a fall at age 72 and passed about a month later. My husband's condition is not too bad yet. No meds at this time, his chorea is not significant and not enough to warrant the risks/side-effects of pharmaceuticals. Our original neurologist was *terrible* as he did not counsel us (or even refer/suggest counseling), did not explain the disease to us, and pretty much just said "you have HD, here, take this pharmaceutical." I was also not happy with his response when I questioned the medication's side effects by shoving a pamphlet in my face and saying "Here, you can read about it." Since my husband had been DEMOTED at work (after 30 years of employment!) and subsequently decided to take early retirement, I did not want to run the risk of suicidality! So for two years I have self-researched and reached out to Facebook support groups for help! He takes a high dose CBD oil that includes CBG, a cannabinoid compound that some preliminary (lab rat) research has indicated it might help. We are scheduled for his first assessment by an HD specialist in Memphis, TN, in a couple of days, so I am hoping for better treatment from them!
I love this video!! Thank you it was very helpful! I have seen the obsessive personality in my 15 yr old daughter. She also paces alot and we are hoping to get her tested this year!
Your channel very helpful!! Thanks. I am also very interested with your new treatment.. I believe this trial will be a rainbow to HD patients in the world.. Are you taking RG6042?
woohyun kim Thanks for watching and for your comments. My trial was involved in the SIGNAL drug which I believe was designated HTTR 16. I just recently found out that the drug was unsuccessful in treating HD. But that’s OK that’s science.
"Am I being forward, or is it my dystonia?" LMAO, still the Mike I know and love!
Larkw hilarious 😆 thanks for watching!
I respect and admire you so much. These videos help many people feel less alone and encourage us to find the humour and the joy in our own journeys. Thank you for being you. Wishing you all the best my friend.
Thanks for watching and commenting.
Holy crap man, so nice to see you being so upbeat in the face of such a horrible disease.
Thanks for watching.
so glad you were able to exit the drug that caused you difficulty...by the way, you are still as articulate and clever a conversationalist as ever. I totally agree that if you have to endure altered reality states of thoughts...you deserve something positive! I once was sure that the Beatles visited me at my high school while I was under the influence of gas at a dental office. I can tell you that I have never been happier than while in that belief state. I am so glad your team takes your complaints no matter how bothersome to you....seriously. And help you reframe *as common theme* with HD plus help tamp down perseveration (a word I feel very accomplished to correctly pronounce.) YOU are a compassionate and charming guy....glad you feel the same about your docs. Love to Emily. Someone living with HD will benefit from this post!~!
Thank you so much for being so open about your HD. My family has it also and most what you see about HD scares a person more rather than being informative. I’ve learned so many new things from you and the uplifting way you present it is amazing. HD is not fun in any way, but the new information can help families try new things. Again, thank you and continue to “find the funny “. I will be one of your cheerleaders in the side!!!!
Terrila Marks thanks for watching and for your encouragement.
You're an awesome person!Loved your video and your attitude!
Thanks for watching!
Hi. I’m so glad I found your channel. Me and my gf just found out that she has Huttington. It is a devastating news for us. Let’s hope there’s a cure in the near future. GL✌🏻✌🏻
Thanks for watching!
Your videos are so fun to watch. My mother has alzheimer's and we also frequently joke about her/our forgetfulness. Sometimes it's all you can do. I am now caregiver for my husband, diagnosed with HD two years ago at the age of 62 with a CAG 41. His father was not diagnosed (they said "Alzheimer's, or something like it" but I knew it was not ALZ and just thought it was some form of senile dementia). Looking back, I am hopeful that my husband's progression is similar to his father's, as he was only bed-bound after a fall at age 72 and passed about a month later. My husband's condition is not too bad yet. No meds at this time, his chorea is not significant and not enough to warrant the risks/side-effects of pharmaceuticals. Our original neurologist was *terrible* as he did not counsel us (or even refer/suggest counseling), did not explain the disease to us, and pretty much just said "you have HD, here, take this pharmaceutical." I was also not happy with his response when I questioned the medication's side effects by shoving a pamphlet in my face and saying "Here, you can read about it." Since my husband had been DEMOTED at work (after 30 years of employment!) and subsequently decided to take early retirement, I did not want to run the risk of suicidality! So for two years I have self-researched and reached out to Facebook support groups for help! He takes a high dose CBD oil that includes CBG, a cannabinoid compound that some preliminary (lab rat) research has indicated it might help. We are scheduled for his first assessment by an HD specialist in Memphis, TN, in a couple of days, so I am hoping for better treatment from them!
Thanks for watching and sharing! Good luck with the Center of Excellence. I go to the center at VCU in Virginia!
How did the assessment go?
Goodness you’ve really been through it the last few months! Glad to see your face again, you’ve been missed. 🥰
I'm glad to be back! Thanks for watching
Hi wish you happy life.
New subscriber 🙏❤️🤗🌹🌹🌹🌹🌹
Thanks for watching p
Looking good brother, great update.
Thanks for watching, John!
I love this video!! Thank you it was very helpful! I have seen the obsessive personality in my 15 yr old daughter. She also paces alot and we are hoping to get her tested this year!
Great episode! The new microphone certainly helps.
James Starkey thanks for watching!
Fingers crossed for more entertaining and fun delusions/hallucinations in the future! 🦄🐲🪐🎸🏝🎉
Melody Counts thanks! 😄
My daughter who has HD is vegan and takes probiotics.No problems with constipation
Thanks for watching and for sharing
Your channel very helpful!! Thanks. I am also very interested with your new treatment.. I believe this trial will be a rainbow to HD patients in the world.. Are you taking RG6042?
woohyun kim Thanks for watching and for your comments. My trial was involved in the SIGNAL drug which I believe was designated HTTR 16. I just recently found out that the drug was unsuccessful in treating HD. But that’s OK that’s science.
@@hdfindthefunny I believe your positive attitude will be very powerful to you. Please stay healthy..and let's keep in touch.!!
woohyun kim yes thanks!