Parkinson’s expert Lianna Marie, CEO of AllAboutParkinsons.com,

joins Suzanne to talk about coming to terms with a chronic illness such as Parkinson's that changes your life.

“I just want to talk today about some of the disappointments, practical or emotional, that mom went through, and things that we were able to do to help her through those, or that she did herself. As we went through, we tried to replace — let's say you, you lose this thing, but let's try to gain another thing over here. If you are a very active person, and now you can't be, that's a huge disappointment. In my mom's case, she was a knitter. If there was competition, knitting, my mom would have been a competitor because she was just the best to put things together. But if you can imagine those fine motor skills slowly deteriorating, and then her not being able to do that anymore. What could we replace that hobby with? And there was piano, then it became singing, and then if it wasn't singing, it was outdoors working on her rock garden. And so it was always trying to shift, going, "OK, we can't do this. OK. What else can we do then keep focusing on, what can we do?" It wasn't saying that we weren't sad about it. It was just saying, well, we're not dead yet. So let's find another thing, and personally, that's how I had to do it for care partnering, and certainly most of my disappointments would have come when mom had dementia. That piece being taken away, mom's ability to have that relationship with me. How did I deal with that? Not very well at the beginning."

Lianna adds, "An unexpected disappointment was in the way that some of my mom's close friends reacted to her diagnosis, and not all in a positive way that you might expect. I will give them the benefit of the doubt, that I think back when that happened, there wasn't a lot of as much information out there about Parkinson's, and there was a stigma. This concept that they had in their mind was that mom was now gonna be this frail invalid that couldn't do anything. And so they changed their view about her. That was a huge letdown for my mom. Of all the things I might have anticipated, that was not one of them. We cut bait from a couple of these friends, because they were definitely not supportive.

"With my sister, when she was diagnosed with terminal cancer, that stress can exacerbate any disease process. The idea that my sister get rid of all the negative things, negative people, it sounds very cut-throat. But in my sister's case, she really had to do that very quickly because, unlike my mom, she had a lot less time. It's a similar case to my mom where these people were not helpful. It was really just saying, "ok, you know what, you're in or you're out, you're on this boat with me or you're not. Mom did have a lot really — as she would call them — gems in her life. Friends that were just fabulous, and family members that really supported her on her journey. And I would just say to everyone that that is a really key. It's basic, but really, life is too short."

Suzanne pointed out having unrealistic expectations of family and friends. "I'm really disappointed in my brother because he didn't come for Thanksgiving," and it could be my mom or dad's last Thanksgiving dinner. And so I had all this in my head, 'He should have been there, and why didn't he do this? And we were all there, and we couldn't have him in the pictures' and all these things. And then we get angry. But the brother says, 'I just had to work.' That is simplistic view, but the whole point is, pay attention to your expectations."

Lianna adds, "That's a great point. Not the easiest thing, because you're like, "But I don't get it. I don't get why they can't do this. It's just so easy." Well, it may be easy for you, but maybe not so easy for them, for whatever reason, and it's not giving them an excuse. It's just saying, hey, we're not all built the same. I am guilty of wagging my finger at one of my siblings and It was just me: my expectation was a little higher than what they were doing.

"I cannot say enough that, in general, just it's always good to keep positive, find your best tribe, your support group, your support people, stick around them and focus on those folks instead of keeping your focus on the one negative."

Listen to more of Lianna's podcasts on Answers for Elders and visit Lianna's website.

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