@A MyParkinsonsTeam Member. I think about it all the time. I'm the pt. not the caregiver I haven't brought it up with my husband. I'm relatively young (60) been dx for 2 yrs but looking back it was going on much longer. I'm very active and I think that helped stave it off for at least 10 yrs. I've tested positive for Laark 2 gene mutation so there's really no doubt. My concern is also about my advanced directive. I've brought it up with hubby but I don't think he was ready to hear about it yet. It's all very hard n confusing at times isn't it!

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A MyParki...

I very much agree with FoViola

as it progresses yes it can be very hard on you his care giver, now here is some suggestions that you can try to have in place for your self and your husband to perhaps take some of the load off your mind, check into in home care if you guys have this in your health care system witch im sure you guys would, a C,C,A or P,C,W comes into your home to help with some of the load, this can prove to be helpful for you and him now this is somethingh you would have to discus with your husband, check into it first see what info you can find out check into long term care witch is a nursing home it is best to get his name on a list for that as the wait list can bee very long. hugs to you you are a very strong willed person

My husband 43 years after the everyday that he will be there for me forever but I don't want him to have to take care of me I feel guilty

we will b living with my daughter and her husband in our own little house that is attached but it is ours. we r fortunate b/c i have terminal emphasemia also.