Hi jennifer, I agree. There is only one problem. I hate having my picture taken, so there aren't many around. My daughter, Brandi is currently in photog school. I will have her help me w/this. She is the only one who takes a picture of my true spirit, not just my face. Regarding the clonazepam. I'm glad it helped your mother. Sometimes getting the dose right is the key. It took me a while. I wasn't taking enough. Now that is the only thing I take. You know speech therapy may be a viable option for her. Daddy used to try to do things for himself, as well. But he ended up getting some physical injury everytime. I call an incident w/replacing a toilet. Yes, a toilet. When I arrived home from school, there he was on the side of the house, holding a towel and saying "call Mom!" over and over. He had severed the main artery in his forearm. Many stitches and a huge scar later(he was lucky) he finally learned to ask for help. But when my mother got further along in her illness, non HD, she would forget to ask for help and she bruised her face alot of times. Alot! Also - Thanks for the heads up on the support network. FYI - I reside in Cincinnati and we have the Southwest Ohio Chaper of HDSA here. (513)741-4372, Dan Leuggers is president right now. I do not know our status on a website . . . Mary Beth Bailick is our Social Worker, what a godsend. My life would not be the same without her. She just arived on our scene a few years ago, but if anywone needs anything in the southwest Ohio area, she is the one for the job. My mother just adored her when they hired her and now I know why. Being a former Medical Claim Processor and Office Manager for the same, I thought I would breeze through my SSI, Medicaid, Medicare paperwork. Well, I learned another one of my limitations. You see, I hadn't found Clonazepam then, and wasonly taking Ativan. Well the anxiety and depression was excrutiating then, leading me to cry endlessly, or to have these respiratory anxiety attacks. That was when Mary Beth and I became close. She has been w/me every step of the way. When she was hired my oldest brother Dennis, and 3rd brother Roger were running the chapter. Now Dan Leuggers is our pres. but I think Den's son Trent is our Treasurer. We don'g have a webpage however. We used to. I'd like to see it up and running again. My mom was integral in setting up our local chapter, with brothers in the 70's-80's. She and i spent many hours crafting, baking, and planning bazaars, then we graduated to Hoop_A-Thons, then Art Sales, refocussing from just family and neighborhood support to corporate sponsorship. It is a neverending task, however they never ending supporters. I commend them on a great job done. How are you?
We've gotta get a picture of you uploaded! We need to see the pretty faces of everyone on here! I understand there is a great support chapter in OH, so if you are not involved yet - you need to hook up with the right people. Check out Robert and Laura Cleveland on this site. They live in Columbus. Love to you! Have a great day!
Hi Mary. That is the dose my mom takes, so now I feel better. If it is working for you, then there is hope. I have seen a substantial decrease in her aggressiveness. I believe that my mom would not be as bad as she is today if she didn't fall in Jan. 2007. She was still with a walker, she was in assisted living and doing well enough to keep her there. Although, she got stubborn one day and tried to shower on her own. She didn't trust some of the staff for her own crazy reasons. She fell in the shower, and probably fell more then I knew because there was not one but two subdural hematomas. Two emergency craniotomies followed. It took over 1 year for her to get better from the operations. There were many complications. Including MRSA...that nasty infection you read about. Yeah - my mom got it from one of the best teaching hospitals in MA. But it all brought me to this point. We didn't know she had HD until after all this went down. So, I still say that Things Happen for a Reason!!!!!
Hi Jennifer, You are a good woman, taking care of your mother. I have the utmost respect for you. Yes this medication for me has done wonders. With the other meds, phycotrophs, and sleeping agents, argumentive, out of it, and manic. Now I only take Clonazepam. While I was taking .5 split in half 4 times daily, .5 twice works better for me. My family history is for me to endstate around 52-55. Meaning I am early in development. Two brothers swear by this also. But I do not know their dosage. Only twice daily. May I ask, what stage is your mother in?
HI Mary. I noticed that you are taking clonazipam. They have just recently given this to my mom. I was wondering what your dosage is because my understanding from speaking with a pharmacist is that it takes very high doses to help with the chorea. My mom's speech is very bad and I'd love to try to help that for her. She gets so mad when people don't understand her. Best to you.
Mary
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Mary
Jennifer