My Mom is driving me crazy with constantly wanting to go to the bathroom! She will pee about once every 10 times. It is difficult to keep her in her chair - her walking is really bad so I must walk with my arm around her, pull her pants down, sit her on the toilet, etc. I feel so bad that I lose patience - but it makes me crazy. She is obsessed with going to the bathroom and then having a cigby juliew - Huntington's Disease Support Center
What you are experiencing when you go to sleep is called myoclonus. Everyone jerks like that sometimes. Also this will come and go. Your experiences do not at all sound like HD and one of your parents would have to have it. You sound like you are battling anxiety and obsessive/compulsive thoughts - If you do go to a doctor ask about Luvox (really helped someone I know who was obsessing aboutby juliew - Huntington's Disease Support Center
I have been perfectly happy with my lasik surgery. Going on 10 years. My HD Mom is always breaking her glasses and she is in no way able to repond to a doctor appropriately for an eye exam to get new glasses. We have had anyone with a remotely similar prescription to hers in our family hand down old glasses to her. I never had dry eye, halos or anything - but maybe I'm just lucky.by juliew - Huntington's Disease Support Center
I am in Michigan and getting one of us on the title would make her ineligible for Medicaid for at least 3 years...by juliew - Huntington's Disease Support Center
Just need to vent.... My Mom is 69 years old, CAG 42, I would say mid to later stage. Walks with someone holding her, lots of swallowing problems, conversational problems. We have had her in her condo with care 12 hours per day (family some hours, other hours paid). Long story short - we are out of money to pay for care. All she has is her condo (worth about 50K). I just found out that we cby juliew - Huntington's Disease Support Center
by juliew - Huntington's Disease Support Center
Thanks Marsha for posting this! I will be praying that this research goes well.by juliew - Huntington's Disease Support Center
Peace to T and your family...by juliew - Huntington's Disease Support Center
by juliew - Huntington's Disease Support Center
Hi friends, Happy New Year to everyone. Not the easiest holiday, spent alot of time with my HD Mom (69 yrs old, CAG 42). She is still able to walk with lots of help but has been having a hard time with choking (also talking). I really thought she was dying one day. I gave her some good blows to the back and attempted the heimlich. It was about 60 seconds of me thinking "This is it...&quoby juliew - Huntington's Disease Support Center
Brittb777- Sorry you are having such hard times. My Mom is in mid to late stage so I sure understand where you are at with her. Hang in there!by juliew - Huntington's Disease Support Center
Brittb777- Sorry you are having such hard times. My Mom is in mid to late stage so I sure understand where you are at with her. Hang in there!by juliew - Huntington's Disease Support Center
For any of you smarties...is there potential treatment here?by juliew - Huntington's Disease Support Center
Barb - I am so sorry for your loss. You and Dan are in my prayers.by juliew - Huntington's Disease Support Center
Would memantine be beneficial to very early HD or those at risk?by juliew - Huntington's Disease Support Center
Yeah!!! So happy for all of you!! And Go Tigers!!!by juliew - Huntington's Disease Support Center
The memantine has been good. Tetrabenazine seemed to work well at first but it seems less so now...by juliew - Huntington's Disease Support Center
My Mom does, both prescribed by her Neurologist.by juliew - Huntington's Disease Support Center
MY Mom repeats the word "shoot" constantly. Like probably 30 times in a 2 minute phone conversation.by juliew - Huntington's Disease Support Center
FYI Fred - we do have legal guardianship.by juliew - Huntington's Disease Support Center
Letting her continue in her current situation may be against my catholic religion - keep her in her condo (and she dies by injury) did we not respect life as we should and take all measures to keep her alive (is this the goal? Keep her alive with little quality of life?). Eric - we ARE scared thaT WE will find her bloody/dying at her home and EQUALLY scared that she will languish in a NH wiby juliew - Huntington's Disease Support Center
I would love to hear from those of you who have been through this or are currently struggling. My PhD Mom is still living in a condo alone. My 2 sisters and I live nearby and see her, we have in home care 4X per week but I am afraid it is not enough. She is way unstable walking (falls), chokes, drops cigarettes etc. We struggle with making choices for her. I know a Nursing home may keep her sby juliew - Huntington's Disease Support Center
Can anyone tell me how their pHD is doing on it? Has anyone been able to get the maker to help pay for it? My Moms walking and movements are getting very bad.by juliew - Huntington's Disease Support Center
My thoughts and prayers with you bohth.by juliew - Huntington's Disease Support Center
by juliew - Huntington's Disease Support Center
Hi Carla - I took my MOm (PHD) to Rome last May. Some things that helped me were - a wheelchair (even though she can still walk - not well), We rented an apartment with laundry facilities. So glad we had the opportunity before she gets too badby juliew - Huntington's Disease Support Center
by juliew - Huntington's Disease Support Center
Barb you are a gem!by juliew - Huntington's Disease Support Center