Thank you so much for helping me understand choreoathetosis. I'm a medical student, and I can tell you that my classmates and I sincerely appreciate wonderful people like you helping us understand the human side of this. I admire your ability to help educate us. You're awesome!
Aan je reactie, goed om te zien dat je er maling aan hebt.. .
Mijn persoonlijke mening: je bent een mooie dame! (hopen dat ik nu geen ruzie krijg lol ;) ). En je spreekt overigens wel heeeeel goed Engels! Gr. Richard.
Sorry I promised a video update and then nothing happened. All hell broke lose on my end. :( I gave a quick update in two new bulletins, and have some video material ready to be converted to youtube format. This time there really will be video updates soon, and the first update will be me in normal mode! :)
@Pienie8 oh sorry.. i will remove my comment.. thanks for posting the video, as a medical student it was very educational for me... thanks for sharing :)
@jcsjohnson: Ah, a medical student! The syndrome I'm told I have is Paroxysmal Kinesigenic Dyskinesia. My neurologist keeps telling me how incredibly rare this is. Officially the cause is idiopathic, but it's thought to be most likely caused by autoimmune/inflammatory processes (most likely sarcoidosis, but as of yet this is unconfirmed).
I am very good..thank god! I am happy to receive your message today..I have a tough exam tomorrow and I feel really good receiving your email before taking this exam.
I wish you the best and I pray for you for real..Take good care of yourself Marcelle..
Thank you for sharing your story. My son (15yo) developed this disorder after a second open heart surgery. Until now I had never seen another individual with choreathosis. Bless you!
@niccan75: I'm so sorry that your son has already had 2 open heart surgeries at age 15! I hope he's doing well now, other than the movement disorder of course. Have they tried medication for your son to suppress the movements?
Thank you for sharing with us. I am very happy the world has courageous people like you who face fears with a smile. You are not alone. I will remember you in my prayers Marcelle..
@zabata1234: Sorry, I accidentally voted your message down and for some reason it won't let me change it! I thought your message was very sweet and I really appreciate it!
Marcelle, je bent een prachtvrouw, en geen freak: terwijl je vertelt is je kat zich volkomen relaxed aan het wassen, kijkt op noch om. Ik hoop dat je je niet verstopt want 'anders' zijn is verrekt lastig in deze 'perfekte' wereld. Hey! laat ze maar staren. Je schoonheid pakken ze nooit af. Lef hebben ze niet, niet zoals jij.
@wokkel10: Hardstikke bedankt voor je message! Ja, anders zijn is inderdaad niet makkelijk. Maar ik heb ondertussen bewust gekozen voor het niet meer 'normaal' willen zijn, whatever the hell that even means. Ik ben wie ik ben, en ik heb wat ik heb. Ik verstop me niet! :)
Thank you for sharing your story. It is good that people with these types of disorders are using youtube to raise awareness. It helps people to know they are not on their own
@kaazoom: Thank you for your message. Yes, seeing Shay really helped me. So if I can help someone else to not feel alone that would be absolutely wonderful! :)
Thank you so much for helping me understand choreoathetosis. I'm a medical student, and I can tell you that my classmates and I sincerely appreciate wonderful people like you helping us understand the human side of this. I admire your ability to help educate us. You're awesome!
Niloy63 3 months ago
Aan je reactie, goed om te zien dat je er maling aan hebt.. .
Mijn persoonlijke mening: je bent een mooie dame! (hopen dat ik nu geen ruzie krijg lol ;) ). En je spreekt overigens wel heeeeel goed Engels! Gr. Richard.
dutchman983 1 year ago
Sorry I promised a video update and then nothing happened. All hell broke lose on my end. :( I gave a quick update in two new bulletins, and have some video material ready to be converted to youtube format. This time there really will be video updates soon, and the first update will be me in normal mode! :)
Pienie8 1 year ago
Marcelle, dank voor je reactie. Blijf wie je bent. Kat ook o.k.? Die kleine dingetjes doen 't!
p.s.: Kan je in Ljauwerd schaatsen?
audia32000 1 year ago
@Pienie8 oh sorry.. i will remove my comment.. thanks for posting the video, as a medical student it was very educational for me... thanks for sharing :)
jcsjohnson 1 year ago
@jcsjohnson: Ah, a medical student! The syndrome I'm told I have is Paroxysmal Kinesigenic Dyskinesia. My neurologist keeps telling me how incredibly rare this is. Officially the cause is idiopathic, but it's thought to be most likely caused by autoimmune/inflammatory processes (most likely sarcoidosis, but as of yet this is unconfirmed).
Pienie8 1 year ago
@Pienie8 Ha sweet, thanks for the details. I"ve only seen choreathetosis in the limbs so it was intersting to see it in the torso.
jcsjohnson 1 year ago
Comment removed
jcsjohnson 1 year ago
I am very good..thank god! I am happy to receive your message today..I have a tough exam tomorrow and I feel really good receiving your email before taking this exam.
I wish you the best and I pray for you for real..Take good care of yourself Marcelle..
zabata1234 1 year ago
Marcelle...How are you doing now good friend?
Please email me on this email if possible: omarhamdyz@gmail.com
zabata1234 1 year ago
@zabata1234: I just posted a little update, and I will have a video update soon. How are you doing?
Pienie8 1 year ago
Thank you all for your absolutely wonderful comments, I really appreciate it!
Pienie8 1 year ago
Thank you for sharing your story. My son (15yo) developed this disorder after a second open heart surgery. Until now I had never seen another individual with choreathosis. Bless you!
niccan75 1 year ago
@niccan75: I'm so sorry that your son has already had 2 open heart surgeries at age 15! I hope he's doing well now, other than the movement disorder of course. Have they tried medication for your son to suppress the movements?
Pienie8 1 year ago
Thank you for sharing with us. I am very happy the world has courageous people like you who face fears with a smile. You are not alone. I will remember you in my prayers Marcelle..
zabata1234 1 year ago
@zabata1234: Sorry, I accidentally voted your message down and for some reason it won't let me change it! I thought your message was very sweet and I really appreciate it!
Pienie8 1 year ago
thanks for sharing. hope the tegretol helps you live an easier life. I wish you all the best!
2melit1med 1 year ago
@2melit1med: Thanks! It has helped me to live an easier life. I will add an update soon!
Pienie8 1 year ago
Marcelle, je bent een prachtvrouw, en geen freak: terwijl je vertelt is je kat zich volkomen relaxed aan het wassen, kijkt op noch om. Ik hoop dat je je niet verstopt want 'anders' zijn is verrekt lastig in deze 'perfekte' wereld. Hey! laat ze maar staren. Je schoonheid pakken ze nooit af. Lef hebben ze niet, niet zoals jij.
wokkel10 1 year ago
@wokkel10: Hardstikke bedankt voor je message! Ja, anders zijn is inderdaad niet makkelijk. Maar ik heb ondertussen bewust gekozen voor het niet meer 'normaal' willen zijn, whatever the hell that even means. Ik ben wie ik ben, en ik heb wat ik heb. Ik verstop me niet! :)
Pienie8 1 year ago
Thank you for sharing your story. It is good that people with these types of disorders are using youtube to raise awareness. It helps people to know they are not on their own
kaazoom 1 year ago
@kaazoom: Thank you for your message. Yes, seeing Shay really helped me. So if I can help someone else to not feel alone that would be absolutely wonderful! :)
Pienie8 1 year ago