One of the difficulties I witnessed my friend Lynne struggle with was when she had to stop driving due to the progression of her illness. Lynne was also a recovering alcoholic and regularly drove to various meetings around Melbourne. For a few years prior to Lynne surrendering her licence, she would have to complete a driving assessment with a specialist OT and driving instructor. During the weeks prior to these assessments Lynne would insist that I instruct her to drive around different areas as well as practice reverse parking in between parked cars. Lynne would also insist that I be at her place on the day of her assessment, for moral support. We were both devasted the day the OT told Lynne that she had failed her assessment, as this took away Lynne's independance, especially getting to her meetings which were extremely important for her maintaining her sobriety.
Lynne was able to get a taxi card which allowed her to only pay half the fare, but she often preferred to travel with me by uber to her meetings. She loved to chat with the drivers and tell them if they were going the wrong way. They were always pleasant and helpful and loved chatting with Lynne who would often tell about Huntington's disease. 
Hi I found the grief side of when I was diagnosed as I am normally someone who tends to google when I want to know things I googled so much about it even tho I had been thru it with my mum.i googled another when I was home and when I wasn't looking online I was constantly running around doing things for it. It got to where my body said enough stop or it will break I then made a decision that when my child comes home from school and weekends I turned my phone off I told everyone if my phone is off leave a message and I will get back to u when I can it maybe sometimes a couple of days bit I am having me time to just breath iaam trying to remember to stop and just breath now I continue to still do this for me a big thing I have noticed is I get tired alot easier then I used to I can have an amazing sleep by just after lunch I'm tired so when my child's at school I tend to have a nap for 1hr I have mild symptoms atm and can drive still but I have issues with memory so I often will forget things I will pause and try prompting and if I can't remember I will ask the person if I have to I have a car and can still drive atm I'm very glad for this but also know and accept down the track I will have to stop. I'm hoping waiving put makes sense
One of the hardest experiences has been becoming a parent figure to my parent. Seeing mum decline over the years and her family not supporting her.
She has no family/friend support bar my sister and I and it's been that way as long as I can remember. I've never know anyone else with HD or anyone who knows about the disease. I always have to explain what HD is to people if I've told them about my mum.
@negativenellie welcome to the forum.
I have some understanding of what you and your sister are experiencing. My friend Lynne had this disease and raised 3 children as a single mum with very little support from her family. I met her before she had gotten tested and became symptomatic. I supported her from the time she got tested until she recently passed away. I once complained to a manager while at southland shopping with Lynne after a store assistant kept staring at Lynne thinking she was drunk. After explaining Lynne's illness the manager was very apologetic and said that their staff would receive training regarding how to assist all customers and to not make assumptions. You and your sister are not alone. I have learnt that no question is a dumb question. Dont hestiate to ask questions and reach out for support. Take care
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