Forgetting….

When I open up to people about my Parkinson’s – which I often do early on – one of the first things they tend to say is that I don’t look like someone with Parkinson’s. They also say that they don’t notice any issues with standing, walking or tremors. All of the above is true.

My tremors appear very rarely and are controlled by medication. They come out when I am unwell, unsafe or anxious. A classic illustration of stress or anxiety bringing on tremors is when I have been in the dentist chair. I have always hated the dentist, so will always get a bit stressed before I go in. The minute they start drilling away and the assistant starts to squirt gushes of water into the back of my throat, I start to tremor. Tremor brought about by all that water being forced into my mouth and feeling unsafe, like I could drown. Not logical at all, but a lot of things we fear probably aren’t logical!

Apart from the odd tremor, I don’t seem at the moment to have too many symptoms. Not ones that are at the stage where people notice.

So my physical symptoms – if they exist – seem to be relatively minor. However, my cognitive issues are increasing. I have noticed it quite a lot lately. Feeling confused and not being able to remember what I was going to say when I am part of a conversation. Especially frustrating and difficult if the participants in the conversation are only my husband and I. Very difficult to contribute when you can’t remember everything you wanted to say. Sometimes I have the words on the tip of my tongue, but I just can’t recall them. It is very frustrating indeed.

One thing I notice about myself is the singlemindedness when I want to get hold of someone to record a podcast. I have had trouble finding many volunteering to be interviewed, but I have made a start. It is a privilege to be able to offer other people with Parkinson’s to tell a bit of their story. I know there are many people out there affected by this condition and I hope I can find some more for my podcast. When I talk about singlemindedness, I often give the example of when I was working at the hospital doing Social Work, I would sometimes need to talk to other team members such as Occupational Therapists, Physiotherapists and others. Being a busy ward, it was often quite some time had elapsed between thinking I needed to talk to another member of the team. So, I would start to enter the ward and I would see the staff member I needed to talk to and I would rush up to them and start talking flat out. Finally after starting to babble on about something, I realised that the person I was bombarding with questions and my own observations, looked like a deer in headlights! Poor things, they probably had their own head full of ‘to do’s’ and I had just pounced on them virtually without warning. I had to try really hard to train myself to approach a bit more slowly and first of all check in to see if they had time to talk or we could make a time. That would often work well.

Then I started to think about why I often felt the need to almost grab my colleagues and start talking before they had hardly registered that I was there and rather demandingly firing questions at them. A big part of it was that I knew that if I didn’t grab them in the moment, that with my memory issues I may forget what I was going to say. Once a moment and a memory was lost, it was difficult to get it back.

Fast forward to today and I am noticing that although my physical self seems to be pootling along, my cognition and recall is not great. I often find myself starting a sentence and then forgetting where I was going with it. I go to mention something and forget what that object might be called. Recalling characters on TV can be hard, but I usually get to a point where I can recall, but it must be painful to watch. When I get over-tired I get much worse with my memory. But sometimes if I carry on with something else, whatever imagery or name I was seeking might come to me when the focus wasn’t on it.

I usually recall eventually.

For me I think at the moment, the cognitive symptoms are the ones that I find most difficult. I have always been good with words and love writing, most especially my poems. If you put in a search for poems on this site, you will find many poems to read. They are mostly amusing and mostly about anything but Parkinson’s, because life is not just about Parkinson’s is it? If it is at some point the one and only thing I think about, I hope that it is far down the track.

So, my memory is not good and seems to be slowly worsening. My husband has said that he hasn’t really noticed it so much, but I certainly do. Also, as illustrated with the incidents of interrupting my co-workers and firing information at them, I can tend to do the same thing with my poor husband. My ability to put off asking him anything or to assist me with anything is not great. I seek almost instant gratification and response from the poor man, for fear that something I know needs to be done will be lost from conscious thought. It is a definite challenge for me to have to ask for assistance with things. Prior to this, it would be my usual practice to try to do something myself first and then – and only after several unsuccessful tries by myself – I would ask for help. Now days I have promised to minimise risk by my husband and so he will naturally be asked more frequently to do things for me. Not a natural state for me to be in, as a person who needs constant help and oversight and it is difficult for me to accept. I see something that needs to be done and my natural course of action of trying for myself is often not open to me. Very frustrating indeed.

I find when I am doing things at home, I might be going to put something away in the bedroom. Part way there I might see that the guest bathroom needs the vanity unit cleaning. So, I detour to the bathroom and commence cleaning it. In order to do so, I put down the item I was taking to the bedroom. I can finish cleaning, walk out the door and turn right instead of left and find myself coming to the kitchen and wondering what I was going to do there. Then a vague thought might enter my brain that I had had in my hand something to take to the bedroom. The trick is remembering what that item was, where I was taking it and where it is now! So, a wee detour can completely derail what was initially a very small task! It is definitely one of those ‘you’ve got to laugh’ occasions.

I try to jot notes down as much as possible. I have a whiteboard on the fridge that shows any appointments and commitments we have in a week. It is especially useful for me to know when my husband’s work days are and what they look like. He works a variety of different shifts and it is very useful to know what he is doing and when. The system for the most part works very well. I just have to remember to do it. I have been guilty of missing appointments and having to rebook a couple of times recently. I think I get caught up in a project – the latest being a mosaic table for next to our new little barbecue – and I can be so foccused that everything else very much takes a back seat.

As I said earlier in this post, I think I am doing pretty well in my physical presentation with very few obvious symptoms. I like to think that I am still at a stage where people wouldn’t know I had Parkinson’s if I didn’t mention it.

So, right now it is the cognitive side that seems to be most problematic.

Strategies include writing things down I need to remember. Keeping a small notepad with me can help. Or, I have a note function on my phone that I put things in to remind me. Nothing is going to be foolproof, but I will try to keep some sort of order in my life and minimise the risk of forgetting appointments or important information.

I still have the ability to communicate through this blog and through my podcasts “My Journey with Parkinson’s” and “Parkies Patter – a chat about all things Parkinson’s” The second one being a podcast in which I interview various people with Parkinson’s and their carer/wife ie. I enjoy interviewing and would ideally like to interview more to give others affected by PD the chance to tell their story.

I hope to be able to enjoy the beauty of words for a long time to come.

The written word in my blog and my poems.

The spoken word in my two podcasts.

So far, so good and fingers crossed tightly that it remains so for quite some time.

What are your main symptoms and how do you manage them?

I’d love to hear from you.