Huntington's Disease

[livingwith]

My grandmother was lost to this desease, and one of my aunts is currently kiving with hd During the psat couple of years my mother, who is in her mid 40’s has started to show signs of the desease. For example she has had an increased difficulty in managing her life, wich is something my aunt also experienced. She has had noticable lapses in memory and confusion. Most recently I have noticed that she seems unable to be still. her movement seems uncontrolable and looks similar to my aunt, a...Read the full article

[hannahh]

Hello,
your journey at the moment sounds very hard. I am a partner of a man with CADASIL - similar genetic set up to that of Huntingtons and in some ways quite a similar disease affecting the blood vessels in the heart and brain, a unpredictable course, with depression, mood swings, early stroke, dementia, migranes, loss of cogntive function,...the list goes on.
I hear your story close to my heart as i became involved with this person when he felt he could not tell me and we planned a family. We have lost an unborn baby in the last 12 months due to the stress this caused me.
My words come from the heart.
I have noticed in the fmaily i am now involved with no one talks about the disease, or addresses it. Some members of the fmaily are even refusing to tell their offspring they have it...even though their offspring are adults and have 50/50 chance of also having it. People will refuse to be tested. it is too scary and too confronting. Every adult has a right to decide if they want testing, but it does become complicated when children are involved. If your mother is showing signs of cognitive decline it may well be far too difficult for her to make a clear decision about this now.
i try and take it day by day. The awful days do get better, it takes time and courage. I surrounded myself with people i could trust and who would understand if i needed time to cry.
My partner does not discuss his condition with me, i do all the research, im scared ill never get to have kids with him...
i think trying to address this with you mum and telling her how its making you feel and your concerns for her grandchildren might work. i guess it depends on her readiness and your readiness to address it. i htink some people will never reach a point where deep in their hearts they feel they can address it.
not sure if this helps.
you are not alone, be brave

[JeanEMiller]

Dear AD

When someone with HD is in denial it can be pretty difficult to get them to do anything that they think is HD realated! Does your Mom live near any of the HDSA Centers of Excellences, etc.? If you contacted either a CoE or Chapter you can connect with a Social Worker that coveres your area to get their help. If your Mom doesn't currently have any insurance, maybe you could convince her that going to this special doctor would help her get medical insurance coverage [if she does test positive for HD you could get her on disability].

HDSA CoE's: http://www.hdsa.org/site/PageServer?pagename=COE
HDSA Chapters: http://www.hdsa.org/site/PageServer?pagename=Locate_Chapter
HDSA Support Groups: http://www.hdsa.org/site/PageServer?pagename=Support_Groups

Connecting with a social worker or support group would also help you to have someone you can talk to! There are several HD on-line groups on Yahoo one is for anyone at-risk. If you check out the HD Advocacy Center you will find all the on-line groups and how to access them: http://www.hdac.org/chat/index.php

I hope this helps a little, A.D. Please find support for yourself, you are dealing with a lot of emotions and responsibilities right now. There are several very excellent websites that can help you learn more about HD, most you can connect with on this link: http://huntingtondisease.tripod.com/hdvideos/id19.html

{{{{HUGS}}}}
Jean E. Miller
HD Patient Outreach
HDSA HD CoE at USF~Tampa, FL.
HD Links: http://get-me.to/hdlinks

PS - I'm not sure that links on this forum show up as a direct link! You may have to copy and past the URL into the "address" window of your internet browser!

[stulchinsky]

In addition to the contributions of others in this forum, users can find physician-developed and monitored information on Huntington's Disease here: http://www.neurologychannel.com/huntingtons/index.shtml

You can also read the stories of others dealing with Huntington's at this link: http://livingwith.neurologychannel.com/huntingtons-disease/

Best wishes.

[lharpster]

Dear AD,
I am truly sorry for the difficult time that you are going through. I lost my mom on Dec. 20, 2007 after a long battle with HD. My dad had been her caretaker until he passed away in May 2005, at that time I became her POA and made sure she had the care she needed. It is difficult to watch someone you know and love live with this disease. My dad was always adament that my mom not know she had HD due to the high suicide risk associated with this disease. Some people had ethical problems with this, however he was doing what he needed to to protect her.
If your mom does not have health insurance is there some way to get her on medical assistance or is there a free clinic that she can go to. I don't want to scare you, but after seeing what my mom went through for 10+ years, health insurance is a must. I had my mom to the emergency room numerous times for falls, not to mention drs. visits for mood swings, psychiatric symptoms, follow-up care, etc. There are a variety of medications available to help curb the symptoms, but health ins. would be helpful in paying for them. There is a lot of info. out there, some of it pretty scary. The Huntington's Disease Society of America has a lot of info. too and is helpful. I saw someone from there replied to your post suggesting that you file for disability. I suggest that you do this if your mom isn't working. Realize the she will most likely get rejected the first time, file again. My mom was never able to get social security disability because she had been a housewife since 1973. Go figure, aliens get social security, but Americans with true disabilities can't because they were "lucky enough" to stay home and raise their children...well, that's a whole other subject. If I can help you in any way, please don't hesitate to contact me. You will need to have a strong support system as this will be a long road.
My prayers will be with you and your family.
Lexi
[moderator note: e-mail address has been removed]

[mamakluv]

Hello My name is Karen and my fiance Douglas is in the early middle stages of the disease his CAG Repeat # was 42 when he was diagnosed in Oct 06.We are involved with the specialist from Johns Hopkins Research Hospital in Baltimore Maryland,I dont think you could get any better than this.We have a wonderful social worker her name is Kit McFarland they assisted us with a very detailed letter to submit to Social Security for Doug to get his Disability Benefits,he was approved the first time,which I understand is a big problem for those affected with HD to get a approval based on a qualified doctors diagnosis.Well here we are, he is getting his disability almost $1500.00 per month and I work as a Personal Care Provider for a few senior citizens in the area,and I also provide care for Doug for which I am paid.....listen carefully.....Call your Social Services Dept in your area ask about your states medicaid waiver program.it is a program that allows the affected person to have a care provider for which that person is paid through the program....still got your attention???The care provider can not be a spouse of the affected person,it can be a sibling,friend,or a child of the affected....a spouse can not be paid!!!!the care provider will have to become certified in the basic training of care giving...CPR...First Aid etc. training can be for free if the caregiver is employed through an health care agency...much like home health..when I went through training I was trained here at the house.A nurse came in from WVMI( West Virginia Medical Institute)we live in WV.and she assessed Doug on the basis of what he could do for himself and what he could not..Upon the nurses determination and with that said,and documentation from Johns Hopkins I am being paid for between 12 and 16 hrs per day.Also the down side to this is that with this program since medicaid pays for the services,if Doug were to own any property,and upon his death...Medicaid will recoupe all monies for services paid to provide him with a caregiver buy placing a lien on such property,at which time if say for example he left his house to his child and if the child sells the property then all expenses would be repaid to medicaid...if the child did not sell the property than the child would have to reimburse medicaid themselves in order that no lien would be issued against said property...fortunately for us Doug does not own anything,we rent.I have a wealth of info.too much for this space.Contact by email [moderator note: e-mail address has been removed].I will be happy to assist you further...Regards,Karen