Hello,

To whomever takes the time to read this, THANK YOU.

I am a 43 year old woman with HD, which apparently has been in progression for some time.
I am in DESPERATE NEED OF HELP. I AM ALONE, AND NEED ASSISTANCE OR ASSISTED LIVING HERE OR IN THE STATES BUT HAVE KNOCKED ON SO MANY DOORS MY SOUL IS BLEEDING AS ARE THE KNUCKLES OF MY HANDS. No one here "gets it", my family has shunned me completely after offering help and HOPE to get back to the states into assisted living, and then yanked it through a text message that tore my heart out.

I am currently living in Mexico, because of how poorly I was treated in the States. Because I need assisted living, as well as anything else available to HD patients. When my family of origin offered help, but with conditions and emotional threats, and then withdrew them, as they have for years, I realize I am utterly alone, and suffering from abuse and neglect from my family of origin as well as physicians who did not care enough to look deeper as I looked drunk or stuttering or had blackouts or falls

I was diagnosed with HD in 2007. I am a 100% disabled veteran who also suffers from PTSD from physical and sexual assaults both during active duty and in VA medical centers, and my family of origin. I come from a severely dysfunctional family where the divorce forced me to become an adult early, caring for my younger siblings, keeping grades up, enduring sexual, physical, emotional, and religious abuse from my father I could not find words for - and disbelief from my mother who refused to believe what I DID VOICE,and ignored the signs we all showed (she was head of pediatrics. Ironic, no?)


It began in 1988 with a blunt force trauma to the head from a senior officer, (an overhead throw where I landed exactly as Christopher Reeves landed, my body a pretzel, and lost consciousness for an indeterminate amount of time. LUCKILY, I DID NOT FRACTURE A BONE). However, I was not believed forced to continue training for 2 years, and my body has become an ortho neuro mess, a source of constant pain and disability. I have learned that such injuries can trigger early onset HD. In my case, in 1990 I was diagnosed with Temporal Mandibular Joint Syndrome...which I now recognize to be the CLASSIC GRIMACE...as well as depression, other soft signs, and a benign brain-cervical spine tumor that a private surgeon blamed on the neck trauma in 2006, when my body went into complete rebellion and confusion.

I was awarded VA Vocational Rehabilation, on my way to becoming a Chaplain, albeit, as my mother said, after 10 years of falling and getting up again from what I thought were what the VA diagnosed, "WELL, IT TOOK YOU LONG ENOUGH!!. I had just been accepted into my MDiv program, when, AFTER THE SURGERY AND DOCUMENTED COMPLEX PARTIAL SEIZURES THAT MY NEUROLGIST INSISTED WERE "IN MY HEAD"....(He locked onto the PTSD diagnosis and boxed me in for 2 years) - was tested in a VA Medical center without ANY pre genetic counseling, offer of anonymity, and received a phone call from my assigned VA neurologist saying "Well, yes the test was positive, you probably have a year or so to live, and there is not much we can do for you. I will follow up with you in 6 months."

I do not lie, if anything I minize so as not to burden people around me. When I read the text message from my sister, a trained social worker, gerontolgy nurse specialist, mother who has been head of nursing homes, pediatrics, hospice, etc....AFTER I revealed to my sister that I FAILED in a suicide attempt a few weeks ago...she asked for complete honesty from me...and put coerced conditions on her offers to help me, INCLUDING BEING CERTIFIED AGAIN AS A SPANISH MEDICAL INTERPRETER WHERE I COULD ACTUALLY CONTRIBUTE TO THE COMMUNITY.... feel like my life IS WORTH SOMETHING, ANYTHING....AND THEN YANKED IT, IT WAS AS IF SHE HANDED ME A BULLET TO AN UNLOADED GUN.

Then I realized something my training, volunteer and paid work with abused youth and human rights advocate, domestic violenc counselor, as well as an assistant to the head of disabled student services in 2005-6.....it was a lifetime ago.

I realize that I am very disabled, unstable emotionally and physically, and that AS MY COUNSELORS FOR YEARS HAVE TRIED TO TELL ME, a victim of abuse and neglect from my mother as well as my father, and that as a disabled person, have been DISBELIEVED, IGNORED, THREATENED, ABANDONED, EMOTIONALLY ABUSED PUTTING MY LIFE IN DANGER ....

I cannot do this on my own anymore. The consequences of dealing with the HD with minimal support in Mexico has left me choosing between meds that let me sleep or food....head injuries that have provoked partial amnesia, I lose meds, money, social support...I am trying to act normal but cannot anymore. Not alone. In my apartment, where I exist...because I am afraid to cross the street alone....I cannot do this for much more.
Not alone.

Do I have any legal recourse, or any assisted living facilities that don´t discriminate the second the hear 43 or HD? I am dying, for a quality of life...

Can anyone HELP me?

Sincerely.

Thank you.

I'm so very sorry for your situation and reason for coming here. I wish I had some advice for you, but honestly I'm not sure what to tell you or where to go, especially if you're in Mexico. If they have some type of social service agency, they could possibly assist you or set you up with an evalution with a nurse/doctor that could say whether you'd qualify for assited living . . . It definitely sounds like you've been through so very much. I hope that you can find help and some hope!! I'll be thinking about you. You've come to the right place, there's a lot of people on here who will be able to offer you support and knowledge . . . try to take care of yourself!

Michelle

Welcome to the site! I, too, am very sorry to hear about your situation. It sounds as if you've already had a very difficult life--even without HD. Are you trying to find a nursing home in the States? I think there are a couple of nursing homes that specialize (or at least better understand) the challenges of working with HD patients. You might want to search this discussion forum to see if any of them have been mentioned. Also, do you have any disability benefits from your time in the military?

If you are a 100 disabled veteran and it sounds like you are due to service connected activity you should go to a Veterans agency in the US.
You would be eligible for a pension for life and a pension due to PTSD. You would also be eligible for all medical care and they have some
facilities you could live in. It would definitely be very positive for you. The best thing to do would be to go to the state in which you lived at
the time of your serving.

Hi Mango,

Welcome to the forum. I agree with Shar and Avenir, the best place to seek help sounds like the VA hospital. It may be the time for you to begin to create a safe network of people around you, sometimes families can't do it. I know it sounds crazy, but a place like a homeless shelter here in the US may be able to help you navigate the system and connect you to the people who can help. I know of one young man who was homeless and now resides in a skilled nursing facility due to the efforts of the shelter. Good luck to you, it sounds as though you could use a break.

Carla

Michelle,

Thank you for the understanding and "TRY" to take care of myself. Just found out a name for a lot of symptoms I´ve been dealing with. I have now advanced to HD related dementia. Not crazy, just not safe to be without assistance. I need assistance to get assistance. I know I would qualify...I am so tired...

Be well,
Jeanne

Hello,

I just got diagnosed with Hd related dementia, guess that is why it´s been hard to help myself get help. I would qualify, but cannot and should not do anything on my own without putting myself at risk..as I have been doing. I do have military benefits, but THAT is where the PTSD came from....assaults on every front, malpractice and neglect in VA Medical Centers, and my ONLY option has been VA medical center "care." I use the term loosely. SUCH A TRIGGER.

I DO get VA "benefits", but the money is not enough to keep me in meds and doctors or an assistted living facility, which right now would be the best option. The VA WILL NOT COVER IT.

I need someone to fill in the gaps between what I make, and help me get help from I don´t know where to start, and the dementia is making it soooo confusing.

Did I thank you for the time and care you took to respond?

My best

Shar,

Thank you for your thoughts. I´ve tried that. PTSD rating that I have is 100%, but it is BECAUSE of abuse, neglect, malpractice, during active duty and from VA health"care." And their mishandling of my case with the HD diagnosis has been devastating. A military sexual assual specialist looked at my case and I was APPROVED FOR NON VA HEALTHCARE FOR LIFE in 2005 while in Vocational Rehabilitation training to become a chaplain. Because ANYTHING MILITARY OR VA IS SO DAMAGING, ANTI THERAPEUTIC, A HOSTILE ENVIRONMENT, SENDS PTSD symptoms through the roof..

Then they YANKED it without explanation. And sent me back to my abusers...so to speak...I cannot go back there.
And according to most States, because I QUALIFY for VA benefits , I do not QUALIFY for state benefits... Unless you or anyone else can help me around that? I now in Mexico have been diagnosed with dementia due to HD, with PTSD. If anyone out there is willing to brainstorm, MY brain is like a collander-strainer.

Make sense?

Take care

Hi Carla,

It´s Jeanne. Thank you for the welcome, and for brainstorming too, it SHOULD work in theory, but if you read my responses to the other posts, that would be jumping directly from the frying pan into the fire and I would die more quickly than alone struggling with dementia.

It is NOT crazy...would´t be for a normal person with normal military and VA and no orthopedic and neurological areas that are also part of my disability rating. The PTSD is due to sexual and physical assaults in the military AND in VA MEDICAL CENTERS. It´s why I get the pension that is not enough....and makes me ineligible for other aid, unless ANYONE KNOWS I AM WRONG?

It would just be crazy making, IN MY CASE. Get sick and triggered around anything VA or military.

Take care

Avenir,

I just reread your post. Yes, theoretically I could qualify for assisted living and hate the idea of a nursing home....but if I could find something in the states in my budget or who would help me fight for increased benefits....I so much just want to live my life with people who "get it." And contribute somehow...

But the dementia, daily memory loss and ability to follow through, the effort it takes is EXHAUSTING. If YOU or ANYONE would be willing to help me navigate to find some of these places or resources....kind of hold my hand through cyber searching....it´would be SO APPRECIATED.

And thank you again for your humanity when I assume you´re on this site because YOU too are affected directly or indirectly by HD.

Sincerely,
Jeanne

I’m really sorry for what you have been through and are going through now. Thank you for your service to our country. Unfortunately the only thing I personally can come up with is the VA and it doesn’t seem like that is an option for you. Do you have any extended family in the states? Cousins? 2nd cousins? Someone? Any relatives at all? It sounds like you only need someone to assist you with the process and unfortunately most of us here are either already assisting a family member/spouse, etc. or are a pHD and can’t take on anything additional.

[www.patientadvocate.va.gov]

I would love to be more helpful but my plate is overflowing and I am stretched way to thin already.
Pete

edit>
[www.mentalhealth.va.gov]

Veterans Crisis Line 800-273-8255

[www.suicidepreventionlifeline.org]



Edited 1 time(s). Last edit at 06/02/2011 09:21PM by lauraandpete.

Laura and Pete,

I got a bit confused reading your response. No thanks needed for trying to serve our country, but thank you...then I´m not sure if Laura or Pete put in a website address? Are YOU the VA advocate?

And then wrote that no, you were stretched too thin as were most people on the site. Ouch, I hear that a lot when I ask for help. That´s why it took me so much to get on this sight.

Please let me clarify. I DO NOT INTEND TO PERSONALLY BURDEN ANYONE TO HELP ME. You are right, I DO need help with the process to get help, and I DO NOT have any. I posted the request in case ANYONE who is in a better situation than I am, who likes cyber searching or has time or information that I do NOT, would be willing to share such with me. Not EXPECTING, PRESUMING THAT ANYONE HAS THE RESPONSIBILITY TO HELP - ESPECIALLY IF IT TAKES AWAY FROM ANYONE OR THEIR QUALITY OF LIFE.

That´s just what I´m trying to fight for right now.

Thanks for "listening."

My best to you

I'm sorry Pete upset you with his post!
we are not VA advocates he was just trying to help by putting up the links.
I dont blame you for being leary after what you have been through.
I think it was the only way he could think of to help you.
but hopefully if you keep digging eventually you will find the help that you need so its great
that your are trying to improve your life.
so keep your head up.
Laura

Hi Mango, I feel for you. Your posts remind me of my brother's state of mind before going into a nursing home. He was trying to live on his own, but nothing, nothing, worked for him. It wasn't his fault; it was the fact that HD had grabbed such a hold on his brain that even the simplest chores were beyond him. I think you are realizing this and reaching out for help. Here on the forum so many of us are barely surviving our own lives with HD or caring for loved ones with HD, so what with the distance added between people who wish they could help, this might not be a good place to find that one someone who will take things on for you. I think you have to look to a relative, a social services person, or governmental agency person for this help, hopefully someone in the town you are in. You need to put those past experiences behind you and seek help at the VA in my opinion. As for my brother, we his family took him to the hospital because he was not eating, and from there he went to the nursing home, and lived for 7 more years. Good luck to you.

Laura and Pete,

Please don´t apologize. I felt horrible that I made someone feel dumped on. I am new to this and am stumbling along. Please thank him for the website, believe me, I´ve alredy used it...

Be well,
jeanne

Laura and Pete,

Please don´t apologize. I felt horrible that I made someone feel dumped on. I am new to this and am stumbling along. Please thank him for the website, believe me, I´ve alredy used it...

Be well,
jeanne

Alice,

Sounds like you have your plate full. Your brother is lucky he has family to assist him.

Good luck.

Alice,

Sounds like you have your plate full. Your brother is lucky he has family to assist him. Sounds like you MISunderstood my email and intentions. I´m looking for emotional support or any other type I can get, and you are telling me that this sight is NOT the place for me. Is that the case? Because it´s hard dealing with this on my own. As a person who used to be a counselor. I find that the word SHOULD can be a unproductive one...because it sounds blaming...and sometimes burdens instead of helps.

Good luck.

I'm sorry you misunderstood me. Sorry I said "should." Of course I didn't mean this wasn't a place to come for support. Why would I say that? Anyway, good luck to you, too.

P.S. I looked through my post and couldn't find a "should."