So today I was reminded to count my blessings. , The title of this podcast is Feeling Lucky to Have Parkinson’s, and that is, no doubt going to seem like a weird thing to, to say to actually celebrate having Parkinson’s. But I’ll tell you what happened today. So my husband and I decided to go , into Christchurch City to have a bit of a walk around the park.
And for some reason, I don’t know why I was feeling really heavy. I felt like I was tipping to the right. I didn’t feel myself, I felt a bit fuzzy headed and I just didn’t feel right. I wasn’t able to walk along without sitting down and having a rest, and I just felt horrible. And I was apologizing to my husband and he said, “Look, you have days like this. You know, there are days where you feel like a real Parkinson’s person. There’s times when you don’t”. And he said, “Today’s just one of those days that you’re finding it a bit tough.” And I think he’s right. , There are times when I almost forget that I’ve got Parkinson’s and I just get on with my life and enjoying my life.
And there is a lot to enjoy in my life. You know, there’s friends that I’ve made at the pool. There’s my exercise at the pool. There’s bowls. There’s cards. Nice people that I’ve met and I’ve developed friendships with. And you know, I can still do things that I enjoy. And every now and again I get a little bit more tired and a more achy.
At the moment I’m managing quite well usually. So, I was having a bit of a slow day and I wasn’t feeling that great, feeling a bit sorry for myself. And when you feel sorry for yourself, sometimes something will happen that will almost slap you in the face and say, “Hey, you’ve got nothing to complain about! There are others so much worse off than you.”
So what happened was, as I said, I wasn’t feeling that great today. My legs felt heavy and things just weren’t working well for me. So we agreed to go to a local cafe that wasn’t too far away from where we were, , called the boat shed. We were sat down and we were waiting for our food to come out. And then the next thing, um, a group of family members came in and one of them was in a wheelchair and there was this family group. They were changing around tables and trying to put the wheelchair somewhere where it was accessible but not in the way of other people. And it was a bit of a palava.
At one stage they went to move a table and it started to fold up. And I was watching and my husband had his back to them and I said, “oh, could you give them a hand? ” but sort of as I said that they managed to get it right because the, table was imminently going to fold up and dump things on the floor.
So they managed to get it all together. And then one by one, they all went inside to, order some food. Somebody came out and talked to the guy that had been in the wheelchair and asked if he’d wanted anything to eat. He gave them some options and off they went to put in his order. Well, he was sitting there and he, I was directly facing him and he looked me in the eye and we both sort of smiled sheepishly at each other.
And I said to him, you look exhausted. And he said to me, yes, cancer’s a bitch. He said, I’ve only got seven weeks to live. And it really brought me up short.
He said that , his family had gathered to be with him over these last weeks. His brother had come from London, his sister had come from Edinburgh. I’m not sure where his, adult daughters had come from, but they came back to the table just after we had finished speaking, and he introduced me to his wife and his daughters.
And he said, , “They’ve come out to be with me and we are going to have some adventures together.” So he said they were going to go to, I think, Milford sound, and , they had a number of, things in the itinerary. He said he’d been to the zoo and he’d feed Meercats. And he had done a few other things that he’d always wanted to do.
So he was a guy that was basically working through a bit of a bucket list and having his family come out to be with him in these last weeks. And so we had a bit of a chat , he said, they’ve all come out to be with me. And I said, well, that’s good that they can come to see you and make some precious memories together. And he agreed. He said, yes, it is. It is great that they could be here. And just as we finished talking, his wife and his daughters came out and as I said before, he introduced me to them and my husband had been in the cafe doing something and he came back, and he said, are you ready to go?
So , we got up to go and I said, I wish you all the best. And he said, thank you. And we walked off.
So as we walked off, I turned to my husband and said,
“Today is a day where I’m grateful to have Parkinson’s!”
And he said, “Why?” I said, “I feel terrible that I was moaning about having heavy legs and feeling a bit weird, but ultimately there’s not so much wrong with me. I managed quite well. I’ve just been speaking to that man and his family that have just sat down, and he said he has cancer and he has seven weeks to live.”
And of course my husband said, “oh no, poor guy”. I said, yeah. But I said, “I have heard from other people who have had someone special in their life who has only weeks to live that have done what this family have done that have come out to spend some precious time with them and see them before they pass. And I think that’s a wonderful thing to do. It’s all very well coming to a funeral, but that is for the people left behind, not for the person concerned. I think it’s a wonderful thing for family members to gather and be with that person who is facing the ultimate challenge of their lives and just be a presence. Make some. Memories, maybe re rehash and talk about old times and reminisce. Look at photos, have adventures as much as the person can, and just lock in those special memories for when that person is no longer around”
As I am writing this, I have also done a podcast and you can tell by my voice if you listen to it, that I am very touched by this man’s bravery and the wonderful gift his family are giving him in his last weeks to make memories together.
So yeah, I feel lucky to have Parkinson’s because it is not going to mean that I have something necessarily life limiting. It’s not gonna mean that I only have weeks to live. Nobody has said that. I have Parkinson’s, I have arthritis, and I have a number of other things. But I can live with them. I can medicate them, I can manage them. I can still have a life for hopefully another 20 years or so. When I think of that man and the courage he showed when he was talking to me, and the fact that his life is limited to weeks, I feel lucky to have Parkinson’s. I have nothing really to complain about.
So I hope he and his family can build some special memories together that will support those that are left behind when he passes.
If only we could all have that when we are nearing our end. This has been Sue for, for Parkinson’s and me, my Jenny with Parkinson’s Care Kaha. Be brave, be strong, be you.
https://open.spotify.com/episode/30kYMCvqoisE0LDuFaQFTp?si=RRAP2gv6RRi2yx8F5AhVmw
My journey with Parkinsons 