Every now and again, I feel the need to check in with myself and see if I have noticed any changes in my presentation. Because Parkies is a condition that has many facets to it, there may be aspects that I am not fully aware of, but others who know me do. That is the hard thing about this condition and I wonder if my family and friends will tell me if they notice some changes. Will they be up front if they notice anything, or will they ignore changes for as long as possible? If they do notice and not tell me, is that OK? When does it become necessary to say something?
There are things about myself that very much are an integral part of who I am. Things that I fear in the way of changes are things like, losing the ability to be articulate in my speech. I have always had a reasonably good speaking voice and I also need that voice to read my poetry. The type of rhyming – old school – poetry that I write is designed to be read out and preferably to be read out by me. If I can’t write my poetry any more it will be a significant loss. I have been writing poetry for nearly sixty years now and it is a huge part of how I express myself. If I can’t write it would be one aspect, but also if I cannot read it out once produced that would also be difficult. I haven’t been inspired to write poetry for the past few weeks. The muse is not really with me right now, but hopefully it will return to me soon. It is not something I can force myself to do. I have always found that if I spontaneously have an idea for a poem pop into my head, then it almost writes itself. If I am out driving and an idea comes to me, I often have the first 4-6 lines of verse before I get home and write it up.
Memory is something I worry about a bit. I have noticed that my memory seems a bit worse lately. The part of memory that I notice as affected is often my ability to name things. It could be the name of an object, a programme or just a word I should easily be able to call to mind. I’m not sure my husband has noticed because he hasn’t said but writing this will no doubt be a conversation starter for us!
I just hope I don’t lose my ability to communicate verbally too soon. That would be a blow for me.
Another thing I am not looking forward to is having what the medical fraternity refer to as “flat effect” which means that my face loses its ability to show emotion. It is something that I often check in with my husband about. I straight up ask him if I still have expression in my face and he says he thinks I do. I hope that is a fact, because I need to know.
This is a challenging space to be in as someone with a degenerative condition. The acknowledgement that there will be change is one thing, but having people tell me they are noticing things about my presentation will be difficult. Perhaps they won’t tell me out of kindness that they are noticing things. Would I want to be told if they are noticing significant changes? It’s a bit of a double-edged sword. If they tell me, I will have a raised awareness that my condition is deteriorating. If they don’t tell me and I pootle on in blissful ignorance, will that ultimately serve me well?
So far, my self-analysis tells me:
- At the moment my mobility is still pretty good. Any mobility issues I have had in recent times have been absolutely not linked to Parkies. It is as a result of arthritis in my knee and issues caused by my back that both necessitated an operation to remedy the issue.
- Every day I feel stronger and better able to mobilise with the minimum amount of pain in my back, unless I overdo things. I am OK if I listen to my body.
- My speech is still pretty good and clear. At times though if a sentence is a bit of a big one, then my voice tends to fade off at the end. I often have to take a second breath to have enough puff to finish what I wanted to say.
- My memory is perhaps slowly getting worse. Remembering names of things, or people seems a bit harder lately.
- I am sleeping less lately. I tend to wake up about 2am or 3am and sometimes can get back to sleep for a while but only if I go out in the lounge and have a snooze in the lazyboy chair. I can usually sleep for another 2-3 hours if I am lucky. If, however, I wake up at 4am, I tend to get up and do some word games on my computer and stay up. I do get tired, but I think I maybe just need less sleep these days.
- My ability to write this blog and record my podcasts seem to be OK. Check out my podcast on Spotify and Youtube “My journey with Parkinson’s”
- Also check out my podcast in which I interview others with Parkinson’s and their partners, if they wish. This second podcast is called “Parkies Patter – a chat about all things Parkinson’s”.
Check-in complete I think. I can’t think of anything else I need to add.
I will try to continue and manage any changes without undue stress and hopefully I can be accepting of change and it is not too difficult for me.
In the meantime, I pootle on…
Here’s my podcast on the topic. It has a bit more detail and can be found on Spotify and Youtube and other podcasting platforms.
My journey with Parkinsons 