It’s been a while since I discussed how I’m doing so this is a general update on where things currently stand.
I met with my GP earlier this week and unusually I was on my own, Greg usually comes with me. I was also the last appointment for the day and so he spent oodles more time with me than is usually allocated.
We discussed my meds and I’ve been taking some in the evenings that I should be taking in the mornings which has now been rectified. I was also there asking for some more sleep support - I’d had a particularly bad week of sleeping; 10 hours sleep in 4 days. He’s popped me on melatonin which is not addictive and so far, it’s not having much affect but I’m also going to try Magnesium and see if that also helps.
I then asked the question I kind of knew the answer to - how will I know the new medication I am on which masks my symptoms is no longer working? He was so kind and sadly replied “You probably won’t know - but Greg will”. It confirmed my suspicions that I will go from how I am now to dementia proper when it wears off fully. I am OK with that answer - I would much rather know the truth.
Even though these new meds have been truly miraculous I’m already reverting back to how I was before - forgetfulness, word searching, confusion (particularly around time) and just generally not being sure if I have done something or not. None of this is new but I was hoping for more fully lucid time if I’m being honest. I’ve gone from not wearing my ID bracelet to popping it back on again whenever I leave the house. Just in case.
I also have a new aphasia symptom which is saying the opposite thing to the word that is in my head. I recently spent a whole day with two of my cousins which was such a treat. They really are more like sisters and one of them asked me an important question to which the answer was a definite YES. However, I sat there and heard NO come out of my mouth! It was the first time I noticed this and it’s been happening more frequently since then. It’s like the wiring between speech and brain has gotten mixed up. More info on the various kinds of aphasia can be found here Aphasia in Alzheimer’s Disease (verywellhealth.com)
It’s also begun affecting my written words, I just reread a draft blog and I had typed because twice instead of became (I promise it wasn't the spell checker). It’s a word that begins with the same letter but it’s still the wrong word - now that could get tedious. I may need an editor with a working brain going forward.
As always Greg has been a champion - we are both learning to live for today because after all tomorrow is not promised for any of us. His answer to all my queries is “Will it make you happy?” And if the answer is yes then I have a green light to go forward. I’m trying not to take advantage of that and instead be grateful for the precious gift that it is. God really did choose the perfect partner for me.
I’m planning two trips, one to see family in Dunedin next month and in September I am taking a trip with a girlfriend to visit another girlfriend in Tasmania. Right now, my focus is on being as physically healthy as I can so that I can do those trips and enjoy every moment. The three musketeers will be reunited. Oh, the fun and trouble we are going to get up to!
In the meantime, I continue to spend all the time I can with Greg and Gabe. I also hang out at the op shop and make pretty windows with Nikki which I still adore but it’s so much more that. The shop is staffed by the loveliest group of local volunteers and I just like hanging out with them. They are all extraordinary in some way and each week I learn something new about each of them.
I’m trying to say that I am still loving life even if I am back to losing things on a daily basis. It’s a hassle and it’s hard not to get frustrated by the losses but I’m getting better at not going immediately to the frustrated place - It’s kind of like reprogramming yourself.
Have an awesome week and stay warm.