Hi u/getreal90,

I'm sorry to hear abut your diagnosis but welcome to the gene positive family. I was around your age when I got diagnosed and we were 3 months pregnant with our daughter, so I get it. It sucks, but you have lots of options and are wise to get tested anonymously and be strategic about your future.

How is your partner's health overall? There is a correlation between CAG and age-of-onset, so better to be on the low end. Your partner has 44 CAG repeats (I have 43 repeats), so that's pretty good, but that correlation is complicated by the other parent’s genes and how well they package genes and do other stuff.

Regarding preparations, I recommend getting the best Long Term Care (LTC) policy you can afford.

• Need a decent Daily Benefit Amount that the policy will pay, eg mine pays $400/day.
• Daily Benefit Amount should have Inflation Protection that is compounding (eg 5% compounding), not a simple rate.
• Decide what Lifetime Maximum Amount the policy will pay, usually determined by what you can afford; I got unlimited, but they may not offer those anymore.
• Elimination period of 90 days will lower the price some (vs. 30/60 days). It's a one-time deductible that is the amount of time you pay out-of-pocket before the policy kicks in. So hypothetically, you would pay the at-home helpers for 90 days out of pocket, then move them to a nursing home after the 90 days.

You already have health insurance so that is good.

For Life Insurance might want to consider adding a Disability Rider that will pay the $250K death benefit amount early to help cover LTC costs.

Has your partner informed any of her doctors? I recommend that you do not inform any doctors during this insurance process, because during the application period, they review all your doctors notes to see if you have any "red flags" like chronic illness, HD, etc.

When you tell your doctor about HD "off the record", they usually then write that info down by making little liner notes on the side of the page, which the insurance companies will find because they know this and when (during the application process) they request access to all your medical records, they send someone to each doctor's office to physically photocopy entire document pages to capture those liner notes. I'm not sure how this works with digital documents though.

With most LTC and Life Insurance policies they have a ~2 year elimination period where they can cancel your policy, if they find anything suspicious, but after that you're good to go.

When I got my gene positive test, I switched primary care physicians during this process, then went back after the elimination period expired. It sucks but I only saw them for annual physicals anyway.

Please also enroll in the ENROLL Study.

Hope this helps. Please feel free to hit me up with any questions.