Hello:

I've attempted this post a few times now. My husband (hereinafter as "D" has been experiencing early symptoms of HD. We have not gone to have him tested yet as this is still a difficult situation, as I'm sure you know, to grasp hold of. I am quick to notice things, I always have been, and for some time I have had a feeling knotting up in my stomach that this is what we are looking at. And slowly it is becoming more pronounce and worrisome. His hands and feet and other limbs have been twitching more, he has more difficulties formulating thoughts, and he's noticed that things are just off. He can't sleep and he's sad and I am powerless to stop the tide from coming in. D has other symptoms as well, but it seems that these are the more notable on-set symptoms. Has this been the case for others who have found out to be positive?

We live quite a distance from the nearest facility to test. I am hoping that they will forgo the genetic counseling to have him tested. What has been the experience for others? How long does one have to wait before being able to have the test done? Because at this point, not knowing is a horrible feeling.

I should have included. My husbands grandmother died from this disease, when my husband's biological father was young. My husband's biological father passed away a few years ago from the disease. We didn't know that what was on his biological father's side of the family. But they knew. We have two children. My husband's sister seems to have more symptoms than my husband currently has. She is a few years older. My husband is 33 years old.

Welcome. I'm sorry you're here, but you'll get a lot of support and guidance from this group. The recommended protocol for testing includes genetic counseling, a neuropsych exam and the blood test. It's only a recommended sequence. With a family history of HD and what appear to be definite symptom, you can ask any doctor to order the blood test.

It will cost around $300 to $400 and the result will be back in 3 to 4 weeks.

Best,

Will

Thank you, Will. Your response helps greatly and is much appreciated.

I am so sorry for what you are going through. Having tested (negative) and lost my mom, I know the process. The only reason I would encourage genetic counseling is because they ask questions and help you understand what the ramifications are on your loved one and family. They are so important. For me, I had to make sure that I had life insurance, nursing home insurance and disability before I took my test to protect myself if the result was positive and I was somehow unable to receive those after. (Discrimination is not supposed to happen but it does). The other things to consider are lifestyle choices. Having a bedroom on a first floor versus stairs, being close enough to walk to the library or store when driving is no longer an option (thus allowing for as much independence as possible). Having a good network of doctors who understand the disease and options that will give your spouse the best support through therapy and medicines is key. Also, hugely important is for you to have support as a wife and caregiver. I think that some testing places if they know you are coming a long distance can make arrangements to perhaps do the counseling in one session and the physical assessment. Anyone can a test done but it does not prepare you for all you need. It is like getting married with no clue of what you will need to survive. I know many people who live productive and happy lives for years with this disease before it becomes incapacitating. The key is being proactive. Also, siblings can vary significantly in their symptoms. I hope this helps.

I'll echo what the others are recommending. My husband was already strongly symptomatic when he went for genetic testing. Even so, they made an appointment for genetics counseling to answer any questions and dispell any myths he might have read online. Depending on which physician you go through, and if they believe D to be symptomatic, you may or may not need to do the pre-counseling visit, and just have it done in one visit. That is how it happened to my husband.

Before testing, you might want to secure life insurance and long term care insurance. I wish we would have anticipated that need before having my husband tested. We had (and continue to have) life insurance--along with a disability rider he opted into years ago. Now we pay NO premiums for his life insurance. We do not, however, have long term care insurance. I am my husband's caregiver. I stopped working a year ago to be at home with him. Our sole income is his SSDI. I will try to find work from home and am completing a training program as we speak. If we had LTC insurance, I would be able to pay caregivers to care with him and still work a bit. We have taken quite a hit financially. I'[ve cashed in a retirement fund to cover some living expenses until I am working again. We are filing bankruptcy to get out of the debt we have. I try not to dwell on the material loss. We have a roof over our head and are able to meet our needs for now.

Good luck with your husband's testing. We are here to support you!
Patty

Thank you, I have been wondering what precautions, i.e. insurance, we need to take before testing.

You can only honestly complete the application forms before you have concrete knowledge of your husband's gene status. The GINA act (Genetic Information Nondiscrimination Act) should protect against family "risk" Unless it specifically asks about family history of Huntington's, you are not required to elaborate.

Once he is gene tested, and if he does come back positive, he would not be able to truthfully answer the pre-health questionnaire. Any falsification could be breach of contract due to fraud. Get those things in place before he becomes either more symptomatic or has his gene test.

On the brighter side, if he does test negative, you would then be able to retain or cancel any policies you no longer think are immediately necessary.

This is my understanding. I am sure I'll be corrected if I am wrong. It is a fairly common thread here.

Patty

This is the same information that I have been able to assess in my research as well, nor would we want to be dishonest about it--but as you said, at the moment my husband is still "at risk" and not absolutely positive. So there is still hope and I would hope that we won't be flatly turned down. It may be a while still before my husband is going to take the test, but knowing that we should look into disability, long-term care, and life insurance is important. We have health insurance and we both have life insurance; however, the health insurance and his life insurance is through his work, so this is something we'll have to consider. I still need to find our insurance booklet and see if his insurance covers disability and long-term health, and how much it would be to continue it if, in worse case scenario, he is positive and will eventually not be able to work.

Thanks for the info and heads up Patti, as always it is much appreciated.

Just keep in mind, if he goes on LTD through his work, they only pay until he turns 65.....only private policies keep paying.

Patty,
Good work, gal. I am "technically" homeless and have no savings, work part time, and am trying to figure out my own future with my HD son. I have excellent friends -- that's why I'm only "technically" homeless. I live in a lovely single-wide trailer on a beautiful riverfront pasture way out in the rurals in Oregon. I'd love to share the "working from home" ideas that you and others discover. Right now I work part-time at the employment office (can you say "Ironic"?) helping people brainstorm job ideas, learn how to navigate online, write resumes and cover letters, and so on. I love my job, but it pays minimum wage part time. Right now, I figure loving my job is the most important consideration. Dealing with HD is enough without adding other pressures right now. I'll let everyone know how it turns out.
Thanks for sharing!!

I have a degree and 20 years of experience as an occupational therapist. Unfortunately, I can't do that from home. I am completing an online course for Medical Transcription and Editing. Many MTEs work from home, either in employee status or independent contractor. It is interesting, keeps my mind stimulated, and actually is teaching me more about other medical specialties than I already had experienced. I know that my time at home with hubby will not be forever, but this should keep me supported until such time as I am able to work outside the home again. Who knows if I will even want to. I enjoy the relaxed pace it brings.

Be careful of any work at home schemes that you have to pay to get into or that promise crazy pay. There are many scams out there.

My biggest difficulty is nailing myself to the desk when there is so much to do around the house. I am creating a more isolated work space for myself to help with this.

Single-wide on a river pasture. Sounds heavenly.

Patty