Anxiety, it’s quite a new thing for me to be as anxious as I can be with this Parkinson’s now. I’ve always been, verging on a bit of a shy person when I first met people. Even though I’m usually quite outgoing, I do find entering into a room with a whole lot of people that I don’t know can be quite disconcerting and I get quite nervous and anxious and sometimes don’t quite know how to approach things.
So recently I decided that I would go to a games thing in our local library from 10 o’clock in the morning on a Monday. I was told that they played games like Scrabble and other board games and some cards. Now, I’ve always enjoyed playing Scrabble. We used to do it when we were kids and, always used to enjoy playing on those rainy days when you couldn’t get outside and play. So, I thought I’d go along and see if I could find somebody to play Scrabble with. So anyway, I, toddled along to my local library, went up the stairs, found the room, and there were people in there already who had started, looks like well before 10 o’clock, and they were all happily playing their games.
And I walked in and they sort of just looked up at me and didn’t really say much, and I kind of stood there feeling a bit awkward, and I said, “I just come to see if I could play some games here.” And somebody said to me, what sort of games do you want to play? And I said, “Scrabble ” and with that. They turned around and said well, there’s not many people here that play Scrabble, and so I sort of thought, oh gosh, what do I do now? So I just kind of stood there and they, some of them went back to the playing their cards and kind of just blocked me out.
And the woman that had spoken up, I said to her, “What are you guys playing?” And she said, we are playing a game called tens. And she said, do you know that game? And I said, no, I don’t. And then they sort of didn’t seem to be offering anything else and I was very tempted to just sort of back out of the room and leave them to it ’cause it felt really uncomfortable.
So anyway, she’d said to me, you know, did I know this game called tens? And I said. No, I don’t, but I’m willing to learn if you are willing to teach me. And that was a huge thing for me. Every, instinct that I had was telling me to turn around and not quite run out the door, but turn around and, and leave the room because there didn’t seem to be much encouragement for me to be able to join that group.
And that is the problem when you have a group of people that have been. Playing a game together for a while orassociating with each other for a while. They get in these little cliques and it’s really hard to kind of get in amongst them and be part of something. So, I felt really uncomfortable at first and just the way everybody kind of stopped looked at me, looked me up and down, and then went about their business.
Some of them acted like I wasn’t even there, and that made it really hard to stay. like I said, I had an instinct to kind of turn around and say, “Well see ya” and walk out the door and not come back. But I’m proud of myself that I actually decided that I would stick it out and that I would give it a go.
So, it was a complicated card game, and it was taking me a while to pick it up and I thought, gosh, they’re gonna get annoyed with me because I’m holding the game up. And I kept saying, “well, I’m sorry. I’m so slow”. And, and they said, no, you’re fine. You know, you, you’re picking it up. All right. And in fact, one lady that seemed quite grumpy throughout the game when I said at the end when we finished up.
“Thank you for, for letting me join you. I’m sorry I held up the game, but I really appreciate you letting me try” And this lady, like I said, who was quite grumpy on the outside, she said, “Actually you you’ve picked it up really quickly. And surprisingly so, she said you picked it up more quickly than most people we’ve tried to teach”. So, I was quite tickled about that. And I had actually said to them, as I do, when I join any kind of group, I’d said to them that I was in the early stages of Parkinson’s.
I told them that it took me a while to process information, so that might throw me trying to figure out what I needed to do next. I think I did quite well and I think I will try and go back next week. It’s another social opportunity. It’s another Opportunity to give my brain a bit of a workout ’cause it is a complicated game. And yeah, it’ll probably do me good getting to know some other people, but I think I need to get there earlier than 10 o’clock or else I won’t get a game by the looks of it. So yeah, that was my experience on trying something new,
I went to play Scrabble, which is very familiar to me. Ended up playing this game called Tens, which was quite enjoyable, but quite tricky. The other thing that I did was this morning at the pool, we have, a group of people, the main people that go to the pool in the mornings and. One of the ladies, well a lot of the ladies are quite chatty and that’s great.
It’s good, very social, but you know, I try to keep moving and I try to get there early normally so that I can get some decent sort of lengths and just walking really fast. Or I’ve been starting to do a little bit of breast stroke, , which helps get my heart rate up, which is good, and just doing a bit more actual swimming than I have been.
But this morning I was running a bit late and so I just thought I’d had two days of being out and about with my granddaughters and my body was quite sore. My back still gets quite sore if I do too much in a day and it gets quite achy, and I have to rest. So, I thought I’d have an easy morning this morning and that was okay.
So anyway, this lady that, I do talk to quite a bit when we’re at the pool started talking about Huntington’s Disease. Now I know it’s a really terrible disease. And she has a family member with it and she started talking about this amazing new. , study that’s been done. I think it’s gene based.
They can inject healthy genes into a person. I don’t know if it’s into their brain or what it is, but, it apparently has amazing results and she said, that, you know, people with Huntington’s disease don’t usually have a long life. And this, this particular gene therapy can apparently give people, maybe decades more sort of Life to live if they, they take this gene therapy. And then she went on to start talking about how terrible Huntington’s was and how it progressed and it how she’d seen some sort of clips of people with Huntington’s in the latter stages and all this sort of stuff. Now this lady knows that I have Parkinson’s disease, and at one stage there when she was talking about it and she was going into some detail.
, I said, “Well, it’s a shame there’s not something like that happening for Parkinson’s.” “She goes, “oh yeah, yeah it is” And then she carried on about terrible how terrible Huntington’s was and how people ended up and all this sort of thing. And I was quite proud of myself ’cause I was starting to feel really uncomfortable.
And I said to her, I’m sorry, I’m gonna have to stop this conversation now. I can’t be part of it. IIt’s just leading me down a path that’s not helpful for me and I just can’t continue to talk about it and, she seemed to take it quite well. She did seem a bit taken aback, but , it was just leading me down the path of thinking about what might happen to me in the future.
What horrible things as she describes them, might be part of my life in the future. I don’t need to go that way.It got my head into a space of thinking about what would happen when I progressed, what would that look like? And I deliberately avoid that. Most of the time I don’t allow myself to think too far in the future. , I’ve done some forward planning with things with, wills and enduring powers of turning and all that sort of thing.
I’ve done the things that need to be done that need to be considered for my future, but I’m very much about living in the now. And not focusing on that future, whatever that might look like. So, listening to this woman talking about Huntington’s disease, it just put me in that space that I’m not comfortable with that I don’t wish to go to, that I deliberately live my life for the moment, for celebrating what we can do in the here and now, and I don’t go there.
So I was quite proud of myself that I actually opted out of this conversation. Because it wasn’t actually going to work for me to be involved in further discussions. And I think that’s a lesson to be learned. And I think that, sometimes we need to kind of speak up if something makes us uncomfortable and if we know it’s going to increase our anxiety or lead us to some point in a conversation that makes us look at the future too closely.
And it may cause us some distress or depression. , I, for one, know that that sort of conversation is not helpful for me. So that’s how I dealt with, a couple of things that have happened in my life recently that might’ve caused me more anxiety had I not kind of spoken up and said, this is what I’m feeling at the moment.
So, yeah, it’s important for me to take control, to not have to feel that I’m forced to be in a conversation that makes me uncomfortable and that I have the strength to say that. So, I hope if you find yourself in a situation where you’re not comfortable talking about something where it pushes buttons for you that you don’t want to be pushed, you too can say, I need to opt out of this conversation, or I need to leave this room and not be involved.
The other thing that happened at swimming this morning was another woman came in and she described a couple of groups for women. She described, two groups for women where women were in, two stages of life, postmenopausal and premenopausal. They gather with women in the same situation and support each other and sort of talk about their issues and basically counsel each other and that sort of thing.
And they were talking about it and I sort of didn’t make much comment. And one of the ladies that I spent a lot of time with said, that sounds really interesting, you know, that something that you might be interested in. And I said. “Actually, no, I feel like I need to actively avoid being in situations where people are talking about their problems, in depth and, and it enters into a kind of a counseling, peer support group that, I don’t feel like it would be helpful for me because the way they described the group, it sounded like something that I would’ve done as a social worker. Much more intensive than the peer support group that I belong to for Parkinson’s and my concern would be that if I entered into a group like that, if I became part of it because I spent 20 years as a social worker, my brain would automatically skip to trying to help people, trying to help them sort things out, what they wanted to do.
And you know, I would then become in a pseudo social work role, I feel, and I want to very much avoid that. So, yeah, a lot’s been happening. It’s just the last few days and those are just some thoughts on those happenings and how they made me feel. So this has been Sue for Parkies and me, my Journey with Parkinson’s
Kia Kaha. Be brave, be strong. Be you.
My journey with Parkinsons 