When I attended the NHNN to have my device re-programmed last Friday, I explained that my problems were left sided tremor, and a lack of motivation. Whilst the DBS programmer was adjusting out my tremor, I experienced a “lifting” sensation. It was like having a sack of potatoes taken from my head and shoulders, and was such a strong sensation that it was almost a physical “lifting”. I thought that that could have signalled an end to my lack of motivation but, if today is any indication, then I fear that is not the case. Tremor is a little better today, since I increased the left hand side voltage on my device, so things appear to be settling down. My voice is getting very soft and weak again, though, and my balance and walking have deteriorated as well. It takes me so long to recover from a long day like last Friday, though, so it’s currently not possible to say whether the changes in my symptoms are down to the device re-programming or just because I’m exhausted.
I get out of bed with good intentions of working my way through a list of tasks that I have written down, but it’s now approaching the end of the day and I have only crossed one item off (and that was just an email that I needed to send). I have done the “usual” tasks (2 dog walks, split some logs, filled the log basket and vacuumed downstairs) so I have done something, just nowhere near what I wanted to achieve.
I really need to get the bathroom finished, so I was supposed to have put that job out to tender on the internet, and still haven’t managed to do it. You’d think it was simple enough. A simple task. An easy win! I don’t understand why it’s so difficult, either. But it is.
My wife calls to say she’s on her way home, so I stick a couple of ready meals in the oven – that was an easy win!
I’m still feeling knackered (and I slept pretty well last night) so I’m planning on an early bath and early to bed.
I’m so happy to know I’m not the only one suffering from apathy. I used to be able to get so much done effortlessly. Now having even two chores can cause anxiety. I find that I am procrastinating which I have never done before.
I try not to be too hard in myself for my failings.
Knowing I’m not alone helps.
Martha
Hi Martha
I used to believe it was apathy, too, but I don’t have all of the symptoms of apathy (see my vlog – https://www.youtube.com/watch?v=1Th0gKlRel4) and a lack of motivation is just one of the symptoms. It’s very difficult to deal with, isn’t it? Made worse because nobody else seems to understand it! It is difficult not to beat yourself up over it, but I try to maintain a list of things that I need to do, and just managing to cross a single simple item off that list can be an achievement some days!
Take care,
Ian
Hi Ian,
Like your blog because it describes really well the some of the hidden effects of PD, in other words, the stuff that no one really sees or even knows about. Things that are mundane and trivial to people without PD become mountains to climb for us. It is exhausting by itself because you feel you should be able to do more – and that is before you´ve actually started the task at hand.
I find that 1-2 hours of rest/napping helps, as does regular and strenuous aerobic exercise.
Cheers,
Hi Oliver
Thanks for your comment. I think I need to get a cross-trainer for the conservatory!
Cheers,
Ian
That is what I use mostly for exercise, besides bicycling and the treadmill ( when my dodgy right knee allows, that is) … I also use one of these heart rate monitor watches, as they give you a good summary of what you actually did in the workout – not everyone´s into that, and in the end it doesn´t really matter – it´s the exercise that counts, not the stats about it.
One question I had: is there any other way to self-medicate cannabis besides smoking the stuff ? Silly question, I´m sure, but I´m an absolute novice on the subject, and I´m just wondering… not that keen on smoking, what with the way smoke gets into everything.
Cheers,
Oliver
Hi Oliver
Yes, you can use a vaporiser (as I do) or make cannabutter (Google it) and use that for baking edibles.
Cheers,
Ian
I am about the same way. My balance is not very good. Legs below the knee are weak and painful.
Sometimes I fall forward to my hands and knees. Like my feet refuse to move in time. I have to concentrate of walking.
I increasingly find myself having to concentrate on putting one foot in front of the other, and not leaning too far forward!