One of the first questions we asked when Mum was put on riluzole was ‘will the other medication be affected’. The nurses said no, so we were grateful. Riluzole won’t cure her, but it will slow down the disease. It might extend her life by two or three months, but when PBP has such a short life expectancy, we jumped at the chance.
Unfortunately, there have been problems which we couldn’t expect. The riluzole is impacting her antidepressants, meaning they aren’t working properly anymore. Her mood has been vastly varied – one moment she is crying, then next she is laughing, and she can’t stop.
It was stark over the weekend. We went to McDonald’s; she wanted a pineapple and mango smoothie. She was the only one having anything, and she has to take her time, so we were sat, having a chat, scrolling through our phones. Dull. Nothing exciting.
And she starts to laugh. We’re looking at her, puzzled. Nobody has said a word for a good minute or so, but she’s laughing and laughing and laughing. The smoothie is getting everywhere – by the time she eventually stopped it had melted and was too thin for her to drink easily.
It was awful. It was almost scary. She was uncontrollable. There was nothing we could do to calm her down, and she couldn’t explain what was making her laugh. I want to see her happy. I want her to enjoy every minute of life she has left.
I’m concerned that she hasn’t been as happy as we thought. We’re tackling this by keeping calm and carrying on. We are going to make plans, give her something to look forward to – from playing with puppies to concerts in the winter. So much to look forward to.
And her medication is being changed. She is being put on mood stabilisers which won’t conflict with the riluzole. I am a bit nervous about the impact it will have on her; we don’t know how her mood will be once the medication is changed. It’s all up in the air at the moment.
But, hey, she’s got us. Her family. Her daughters. We’re just about bonkers enough to keep her happy.
We were there through some of her darkest days, and we will always be there. We don’t give up easily.