Thank you for all you and Marsha have done and are doing . This is the only site I use to express myself and digest by reading what others are going thru. Sandiby sonshinesandi - Huntington's Disease Support Center
Have corrected the mistake , thank you Marsha for the information. I would be pleased if any of the insights gained from the information that God put in my path to help me understand what is going on with my own HD would be used to help others. Thank you for asking and offering to put it where others will receive the most benefit.by sonshinesandi - Huntington's Disease Support Center
please if you are struggling with the cognitive issues of HD or you have a family member who is struggling and you are a caregiver read the very lengthly post "gleanings from the point of view of the person that has HD" for extensive info on cognitive issues of PHD I think it will be worth your timeby sonshinesandi - Huntington's Disease Support Center
Thank you for your input. I have not tried St John's Wart in a long time, I will purpose to go to check this out at the health food store and in the pharmacy also. I would like to make changes that can be added to my diet regularly and permanently that will improve my outlook and not have to take pills or prescription drugs on a permanent basis. I do not mind taking prescriptions when the goaby sonshinesandi - Huntington's Disease Support Center
This is from my personal journaling and it is VERY lengthly but I am posting it for those who are struggling with the cognitive side of HD and feel like they are drowning. Coming on this information changed my outlook and helped me to understand what was going on inside my own head and mind. September 15, 2013 This week God allowed me to be encouraged by finding a book written by Jeffrey N.by sonshinesandi - Huntington's Disease Support Center
For those of you who are interested. Phil Hardt, and part of the staff HDLF has HD and if you will put his name in the search area it will bring up all articles he has written for HDLF. I have also found that Marsha Miller, also on staff at HDLF , and as part of the scientific community who has chosen to concentrate her research and practice around HD , has so much information that she has poby sonshinesandi - Huntington's Disease Support Center
For those of you who are interested, if you will go to the search blank and put in Phil Hardt, or Marsha Miller, it will bring up all the articles that they have written and made accessible thru HDLF. I have found both of their research and postings so helpful.by sonshinesandi - Huntington's Disease Support Center
Author: Phil Hardt Author: Phil Hardt I wrote 14 Changes That Could Signal Concern In HD - to inform and teach about the softer symptoms of HD in a manner that can be easily understood, allowing everyone to recognize their subtleties early on so they can cope positively with them, instead of letting them ruin their lives. In addition, I got tirby sonshinesandi - Huntington's Disease Support Center
YES BARB.....YES, YES, YES.... I do agree about applying for the disability as soon as you qualify. I apologize for the misunderstanding. Not all have jobs that will allow us to keep those benefits and again, I was looking at things from my personal situation. That is why all this input is good and right!!! Applying for disability as soon as possible , even if you are rejected to begin with,by sonshinesandi - Huntington's Disease Support Center
So sorry Barb, You are 100% right.by sonshinesandi - Huntington's Disease Support Center
Thank you Barb for the input and I do apologize for the length of the posts. I will try to keep them more concise. Yes, loosing a job can be for other reasons than the disability and that is a very good point to remember. We, none of us, have true job security whether we are a PHD ( person with HD) or not. The ADA ( American's with Disabilities Act ) has guidelines that are for ouby sonshinesandi - Huntington's Disease Support Center
Again, thank you all for the input in this conversation. Concerning the sleeping in separate beds in order that you both may get some rest. I am now a widow so this is from observation of my parents who have been married 61 years August 23. My mother has HD, she was diagnosed the fall of 2009 at the age of 78. They are together in a nursing home now. My mother was always somewhat of a rby sonshinesandi - Huntington's Disease Support Center
Just want to repy to the caregivers... I have found out that I ( as a person with HD ) when I get tired, must immediately say" I am tired, I have to stop, and then for me, I have to walk away and go take a nap. It may be 15 minutes, it may be longer, but if I try to be polite and socially correct it always backfires, I MUST quit whatever it is, talking, cooking, playing, grocery shopping,by sonshinesandi - Huntington's Disease Support Center
I appreciate the feedback. It is encouraging . We just have to keep on keeping on one step at a time.by sonshinesandi - Huntington's Disease Support Center
Each person with HD has a different emotional and mental and physical experience. The caretakers experience is different than the person who has HD. Reading about HD from the point of the person who has it , is totally different than reading about it from the caregivers point of view . I am learning that if communication is possible that it is best for me ( in my situation as a person with HD) toby sonshinesandi - Huntington's Disease Support Center
Altho I am not a regular participant, I have found such good information here on HDLF. I have just done a search thru the search forum and nothing at all comes up with the words depression, depressed ..... I am struggling. I am one of the eight who have very little chorea to deal with except in times of severe stress or exhaustion, but I do struggle with depression and motivation. This genby sonshinesandi - Huntington's Disease Support Center
Thank you for your prompt reply.. I will keep this info and print it off. God Bless as you continue your work to help us understand HD.by sonshinesandi - Huntington's Disease Support Center
To those that are administrating this site or anyone else. The fact Marsha Miller posted that 1 in 8 with HD do not show signs of chorea...... Please elaborate and give more info, direct to written information. Even tho I have tested positive for HD, I have very little if any chorea. The neurological doctor in the clinical trials for CoQ10 that I am participating in at UTSouthwesteby sonshinesandi - Huntington's Disease Support Center
Marsha, Please email any info you have on this fact. I have not seen it before and am struggling not with chorea but with the emotional and cognitive parts and because their is very little if any chorea the medical neurological doctor in charge of the clinical study thinks I have a "mild" case of HD. And yes physically it is mild but the cognitive part that latches on to somethiby sonshinesandi - Huntington's Disease Support Center
We found out after a serious car wreck in the fall of 2009 that my mother has HD. We also know now , after the fact, that her daddy and his mother must have had HD. My only conscious memory of my great grandmother is a very small woman with jet black hair and a nodding head. I only remember my granddad as having tremors when he would light his pipe, no other time. My mother was always a resby sonshinesandi - Huntington's Disease Support Center
Thank you for your response Eve, I get distracted with the daily things and forget sometimes where I find encouragement. I know that only if I take one thing at a time can I make it thru the day and sometimes I get over whelmed by the barage of decisions that are just part of every day living. It is especially frustrating when the affects of the HD and the ability or non ability to process tby sonshinesandi - Huntington's Disease Support Center
If you are not ready to spend your life with him if he is diagnoised with HD then it would be kinder to break it off now, Whether this is HD or not does not change the fact that it is a problem that is not going away or getting better and whether that is by choice or by genetics the fact remains that it is something you will be dealing with forever in this relationship and if you are not willingby sonshinesandi - Huntington's Disease Support Center
so, scary. You send the family the information on HD and try to educate them. My dad said there was something wrong with my mom and for 20 years we just attributed it to the way he had to be in control of everything and that she was finally standing up for herself. The in 2009 after a severe car accident ( she was a passenger) she was diagnosed when it became apparent to everyone that somethiby sonshinesandi - Huntington's Disease Support Center
I know I am new to this site but one thing I have found out is that routine and stability is paramount to an HD individual . If that routine can not be provided the situation gets worse. Even a planned trip or outing can trigger undue stress and emotional outbursts. The routine of same activity at same time weekly, daily, is so important. My mother is almost 81 and was diagnosed when sby sonshinesandi - Huntington's Disease Support Center
Just want to say thank you to those responsible for this site. I found it thru HDSA when they posted the faces of Huntington's meet Steve His short account of what he experienced and the confusion and unexplained actions and reactions and unconnected odd thinking of his wife was like a light in a dark tunnel. I became a widow in April or 2010 (my husband and I had been together on and off sby sonshinesandi - Huntington's Disease Support Center