My name is Jillian. I am 25 years old and was diagnosed with HD 5 years ago. I'm new to the forum, never really ventured into any type of support group activity but lately I feel the need to. My symptoms are starting to show and I'm scared and alone. My Mother's great grandmother, grandmother, and mother all had HD as well as my mother and her brother. She passed from it in 2012 at 59 yrs old and my uncle passed 6 months after. Once she started getting really sick I decided to get tested. Still not sure if that was a smart move or not because sometimes i find myself obsessed with it. Everyday it haunts me. Every time i trip or drop something i start to get anxiety. Recently I've been losing feelings in my hands and getting tingling sensations from my shoulders down. I worked at Allied (in care facility for the intellectually disabled) and quit yesterday. I was being told by supervisors that my motor skills were lacking. And yesterday I was told that my speech was slurred and they had thought i had been drinking. (I also have epilepsy which i take Keppra for and I'm being treated for migraines as well). After being told that my motor skills were off and my speech was slurred and they wanted me to be escorted by security to a local hospital to take a drug test and had thought i came to work drunk i was very offended. I have been consumed in these new symptoms to begin with and to be approached the way i was by my supervisors made it all that much worse. So i got up and left. I have a 3 year old and now no job and my HD is progressing. I can't control my feelings, i cry the majority of the day, i am extremely exhausted but have insomnia, i get very moody. I have another appointment at the end of the month to talk about the progression of the disease and the new symptoms. I just need someone i can talk to who knows what i am going through.

Hi, Jillian, what is your CAG count?

Jillian-

sending a cyber hug your way, it sounds like you need a friend and you will find many here. This site is full of compassionate people who know what you are going through. Not certain but you may want to talk to your employers and level with them about the HD so that you could get some financial assistance if it is offered with them. Also maybe you could move your appointment up instead of waiting till the end of the month. Not certain who you are seeing but perhaps they could direct you to a social worker who could help you find the resources you need. Keeping you and you little one in my prayers.

Jillian, I am sorry that you have tested positive but glad you found us. Is there anyone who can act as an advocate for you? Is your father alive; can he help? I think you need to get in touch with a social worker right away. Is there one attached to the place where you tested? Someone needs to contact Human Resources on your behalf and tell them that you do not have a drinking problem, you have a neurological problem. I can understand your being upset and offended and just quitting the job, but you may have cut off resources such as unemployment insurance or disability insurance if you have it and you will need resources and you deserve them.

Hi Jillian.

So sorry you are feeling alone. What area of the country are you in. If you have a local HDSA chapter, you might be able to get the social workers to advocate for you and get an SSDI application for you. Someone needs to talk to your employer and explain the situation. You would think they would be compassionate of your situation given the business they are in.

Do you have any family nearby?

{{{hugs}}}}
Patty

thanks everyone for the hugs and the prayers. My CAG is 43. Also as far as family, i really don't have anyone to understand whats going on, my family kinda distanced themselves from me and i from them. I tried to move the appointment up but the VA is so booked that the end of the month is the soonest they can get me in. as far as the job resources, yes, i probably cut myself off. i just was pretty hurt the way the situation was brought on. and I'm not sure about any HDSA chapters near me. i needed someone quick to talk to so i jumped online and found you guys. I feel like my symptoms are progressing rather rapid and needed someone quick to spill my guts to. and i read a lot of your stories before i posted my own. so i want to say thank you guys for listening and responding with your thoughts.

Hi,

I am in a similar situation. In the beginning stages with no one to help. I am divorced and my daughters live close to me but don't have time to help me.

I agree with Marsha that it would be really beneficial is someone could call your work place and explain to them that you don't have a drinking problem and you were offended that they thought that so that's why you quit. Have them explain that you have a neurological problem. I would hope that they might hire you back or be forced to fire you so you could get unemployment or benefits. Do you belong to a church? If so, maybe the minister, priest or rabbi could call for you? Or see if there is some sort of social worker who could help you and maybe he/she could call. I hope you get involved with trying for SSI disability since that might take awhile. Don't give up! Good luck!!!

Welcome to our world, sorry you have to join in. You have gotten some great advice so far and I suggest you be proactive in your approach. With that said, listen to the experience of others who have walked this windy path. Keep posting and asking. Someone will respond.

If you can salvage walking off the job it would be in your best interest. Perhaps something could be worked out so you could go back on the payroll and leave in such a way benefits were available.

Mike

Jillian,
Want to agree with all of the good advice you've gotten so far. Also, just a suggestion if you do not have a church already, find a church that takes part in outreach -- in my area there is a large church that sponsors the Food Bank dispersals -- and approach them and tell them just what you've told us and ask if there is someone who can advocate for you. You might even suggest you only need a 'one time donation of time,' or something like that. Something with a limit. I find that people tend to give MORE if you allow them the limit and express your gratitude for whatever they can give.

Also, to others reading this. Can't we create a "critical moment" team that can help individuals like Jillian? We need a list of lawyers, nurses, doctors, ministers and lay persons available for that "one time" help. Most cities have a handbook of services available locally -- here in Oregon you can sometimes get that information at DHS. There isn't a "critical moment team" in the local handbook, but there are other church-group non-profits that offer a number of limited assistance services (usually bookkeeping or carpentry, but why not helping someone walk through the SSI process?).

Kathleen