Mark and I have known for about 3 weeks of the possibility but had only told our children(age 15, 17, 19) the day before that HD was being considered. The test result confirmed what I knew in my heart but I was still holding out hope. Now on to the next steps and I have a few questions.
1. Mark is the first diagnosis in the family. We will have to notify his sister and his 2 adult children who have only occasional contact with him. Any recommendations on doing this most compassionately?
2. His CAG is 42. He is 58 and has probably had symptoms since he was 40.Does this tell us anything about what age any of his children might start to have symptoms?
3. He does not have health insurance. We have applied through healthcare.gov but don't know yet whether that will actually occur or not. He was a stay at home dad until our divorce so has not worked 5 of the last 10 years so cannot get SSDI. Is there a way he can get medicare only or Medicaid? His income is around 24,000.
Thanks for being here!

First, I'm sorry about your news, but knowing is better than not knowing. I did not know my parents were going through the testing process. I think you telling your kids the day before was just perfect, didn't give them several weeks of worrying, but, they were given the results as soon as you knew. My parents apparently were going through the testing process just before Christmas, but, they didn't tell any of us until after Christmas. They phoned each of us on new years day that year, told us he had been tested, and it was positive. In thinking back, I realized they waited until after Christmas so as not to put a dampner on Christmas. I wish you good luck in needing to tell other family members.

A 42 CAG is not the worst news. (My daughter's is 60) The children could be well along in life before they are effected, but there are no guarantees. There are folks here like Will doing quite well with a similar CAG. Do not assume that he may not qualify for SSDI. It has been a while since I've studied the formula, but it is complex and based on lifetime accumulated earnings. It is better to apply and be denied than to assume he is not eligible. There is always SSI which is for lower income earners. I don't know if his alimony would figure in. It and other assets could be a dis qualifier for medicaid but he should talk to a financial planner to cover all bases.

Who would we go to about applying for SSI? Do we need a lawyer? Howard mentioned a financial planner but my experience with them is that they mainly handle investements, IRAs etc.

SSI would probably be at the local department of social services. Medicaid would be there also. They should have a medical MSW who could steer you in the right direction. Make an appointment, it can't hurt.

Thanks Howard,
We are seeing a social worker in the neurology department tomorrow so will start there. I also called the Center of Excellence in Minneapolis and hope to get up to see their team at some point depending on the cost. I am still hoping Obamacare will come through for him. Thank goodness the pre-existing condition is no longer a problem....at least that is what they say.....

I would only use a lawyer as a last resort. A lawyer will take some of your benefits and SSDI can be attained without one. My BIL went through
an attorney with little luck and two years later I helped him and he did get the SSDI, however, since the attorney had started his case the
attorney received his large fee. I didn't realize he was using an attorney or applying until it was too late to get the attorney out of the picture.
As far as SSDI in our state if you have been married to your spouse for 10 years or more they can get SSDI based on the spouse's income if
it is higher even if the marriage resulted in a divorce, widow, widower, etc. so you might want to check into this.

Medicaid will depend on the State you live in. Medicare is federal and Medicaid is administered at the State level.

Each state has different Medicaid laws.

He should still apply for SSDI. If he hasn't worked and it was because of symptoms they will sometimes go back retroactive. He should at least apply and try. I believe it is 7 or 10 years of no work which makes you ineligible. SS now has compassionate allowance for HD, meaning it is easier (with a confirmed diagnosis) to get benefits. If he doesn't qualify for SSDI they will automatically submit an application for SSI.

Forget the lawyer. Check out Phil Hart's instructions on this site about applying for SSDI. One of the things you have to show is that your ex is unemployable. So if he has gotten into trouble with the law or anything like that, include police reports. If he was fired from a job, include that. You want to show any anti-social behavior or problems that would make him unemployable. Also if the Dr.'s have said no more driving, that helps.

There is still a 2 year wait after approval for Medicare so continue with application for health insurance. If he qualifies for your states Medicaid program the application will tell you at the end.

Good luck

The last two time we went through the SSDI review process I was pleasantly surprised with the case worker at SS. He was able to pull Laura's file and review any areas of concern on the paper work with me over the phone. Any time I have to fill out SSDI documents I refer to Phil Hardt's page here [www.hdlf.org] . Also search out "SSDI' on this forum for additional research. When you fill out the application, they give you these tiny spaces to write paragraphs. I had them refer to a separate document I wrote referring to each specific question. We never used an attorney and we had to appeal the original decision back in 2004.

I am so sorry to hear the news. I went back and read some of your previous post and I'm glad I did. I apologize but I am going to get off subject a bit.

It seems sometime that when things get tough (especially with children involved) we at some point dig deeper and find a part of us we didn't know was there. Then we take what has been dealt and push forward even harder. You sound like a very compassionate and caring person. To blame yourself for the way things are today is not giving yourself enough credit. I cannot attest to the circumstances but your concern for him and the children is a precious gift. Perhaps that's why you are in your particular field. I would certainly want you on my team. Remember, we have no control over whether we have the gene or not. That is how I have dealt with the possibility of passing it on. This doesn't make it easier but it is being honest with ourselves. After all, you have wonderful children you may not have otherwise decided to have had you known.

I too am the first in my family diagnosed with a cag of 36. It seems everyone presents so differently and progresses differently as well. Like Mark, we are similar in age, my Father died at 57 when I was only 6. I can't say if I had symptoms earlier but there are things that make me wonder. I have probably been somewhat atypical. The "doc's" think a head injury may be to blame for mine being triggered.

Having two children I told them and my family right away since getting a diagnosis was so difficult (if you have time I had the opportunity to write an article on the forum about the subject that could possibly help). I have learned so much about the subject, mostly here. My children are older and both have reacted differently. Since diagnosis my oldest and his wife are expecting our first grandchild in April. They were referred to genetic counseling. After that my son began to see what I have been trying to tell them both.

I think telling those at risk is important. This can help them with future decisions as well as minimize some testing of ancestors test negative. Don't forget there is a 50% chance they don't carry the gene. Testing as I have learned is a pretty personal thing. What will "I" do with the results. There have been some great threads on the subject. Perhaps when you make contact with his family you can find something in print to share with them on the subject. HDSA has free literature packets that may help. Unfortunately denial is possible.

Back to SSDI. I'm not sure about the details but you have gotten some really great starting points. Yes, if you get an attorney they get a limited cut and quite frankly probably won't do much to help your odds. I did use one but they didn't want to talk with me until I was denied.

I hope you can get the insurance in place. With Obamacare at least health insurance will be easier to obtain.

I wish you and yours the best. Lean on us, that's why we all have come here. I apologize for taking the long way around.

Mike

Thanks so much Mike. The fact that you care enough to read my posts and reply in such detail is very comforting to me. I am so isolated as most don't know what Huntington's really is. Also, I am trying to respect my children's privacy by being very careful who I share this information with.
I will look up for your article on the forum about informing family.
I don't know much about triggers but I have wondered if Mark's symptoms started progressing more rapidly since his heart attack and bypass surgery last thanksgiving. This can stress even a very normal brain as can a head injury. I believe Mark's symptoms started over 20 years ago. We had to get twin beds because I couldn't sleep in the same bed with his feet moving all the time. He has had word finding difficulties for many years and his physical movements started with repetitive sniffing and a shoulder shrug which I can remember being present at least 10 years ago or more. He has had depression and mood swings for many many years and it is probably impossible to know if that was related to the Huntington's or not.
Thanks for your support!
Jackie

Thanks. I'm not doing anything the rest wouldn't do. You have good days and worse days with this. I caught this on a good day. We have some very compassionate caregivers here.

Think for a minute about triggers and MS as well as other neurological disorders. Personally, I don't hide the fact that I have HD. I get a lot of uh huh's but they mean well. Sometime I ask if they really know what it is. Now, I don't really bother much, it's harder to explain and I don't want to be a whiner although I feel like I need to explain.

What was your exposure to HD in medical school? Just curious.


Mike



Edited 2 time(s). Last edit at 12/16/2013 08:56PM by mikee.

wow, medical school was a long time ago. I don't remember but probably not much exposure to HD unless it was used as an example in Mendelian genetics. My first exposure to HD was after I started doing hospice work about 6 years ago. I remember the patient in the nursing home, he had mats and bean bags on the floor and would scream at anyone who came near that he wanted a cigarette. Then, my Dad married the widow of a physician with HD who shot himself after becoming unable to practice. His 2 children were a few years younger than me and both had HD. One was a veterinarian in practice with one of my highschool friends and the other was a social worker who had babysat for my kids years before she had symptoms and years before I ever knew we would be related. Pretty weird huh?!. Over the past 6 years I have cared for 3 adults and 1 pediatric HD patient. They have been the most difficult cases I have had in terms of managing symptoms without making other symptoms worse.
This is just a horrible disease, no 2 ways about it and i am so broken hearted. I just want to pull the covers over my head and stay in bed. But, I don't of course. I just keep putting one foot in front of the other trying to imagine how I am going to manage Christmas. The kids and Mark seem to be handling this much better than I at the moment.
Thanks for listening
Jackie

Wow and your are very welcome.

Merry Christmas.

Mike

Hi,
So sorry to hear the news. I am newly going through this with my sister right not. My best advice, is tomorrow, call the HDSA.org and ask who is the social worker in your area. They are amazing. A great social worker will help you with the paperwork. I am in those steps right now with my sister. Finding doctors and facilities that are HD is KEY. It makes a world of difference. If you want to e-mail me, feel free. I want to help and like I said, I am going through the same process.
But rest assured, you will qualify for everything that is available. It will just take time. And it should be free.
Sincerely,
Christine Burke
chriss6007@comcast.net

Reading this post again reminded me of one of my visits to Mayo. This was the day I got my results but prior to seeing the Doctor.

While in the lobby, a man was wheeled out and when they got to the elevator area just outside the lobby he began yelling and becoming as unmanageable as he could be. This was very disturbing, not personally but knowing he probably had no control of this outburst from the sound of it. It wasn't until a long time latter that I connected the dots. If that was HD and I'm pretty sure it was, it would be very disturbing knowing what the symptoms are as a family member being at risk. Being first can be a blessing in some ways or is it ignorance is bliss.

Mike

yes, my kids have the experience with my step sibs so they 'get it'. However, their friends don't really. One of my girls said to me "it's not a secret that Dad has it and we might get it...the thing is....kids really don't know what it really is"

Yep and a lot of adults. We have or have not had the fortune to see HD symptoms. Children no matter what age are somewhat made of Teflon, just like we were at some point. I am having difficulty this Christmas and no matter how I feel you have to ask if it's HD progressing. It really sucks.

Mike

I am sorry to hear you are having some trouble. You sound like a really top notch guy! It must be awful to be analyzing every feeling and thought as to whether it is the HD? Do you have some clear symptoms of HD yet or are you just in the waiting game?

Thank you very much. You sound like a good person to do what you are for your ex-husband. Good people don't keep count of good deeds.

I am in the early stages. It has been confirmed genetically and symptomatically.

Sooooo many thoughts a day go to HD.

Mike