Today I was struggling to do a screen recording of the Word letterhead lesson. Part of the problem was certainly due to Parkinson’s as I have explained previously.
But part was due to my living in a care home. The staff have certain routines they have to follow. So even if your door is closed, which would normally indicate you desire privacy, staff would storm in to bring your laundry, or whatever. Some would knock first but barge in anyway like the others. Some would come in just because your door is closed. Either way your recording is ruined and you have to start over.
I don’t blame the staff. They just don’t understand that someone living in a long term care home would want to do video recordings! I thought I should make a sign that I could put on the door “SILENCE – Recording Session in Progress“. Wonder what their response would be?
They have no idea of the pain and anguish I go through to make these recordings and that I indeed have a medical reason for this. As one looses neurons during the disease progressions, the brain uses the remaining neurons to form new connections or synapses to take over the work from the lost neurons. One has to persist even though it is awkward and painful because it takes time to form these new synapses.
I have seen some success. For example, I had lost my ability to type, but now I manage to touch type at a reasonable speed except for my left hand where the Parkinson’s is more advanced, I still struggle with the shift, control and caps lock keys.
The other success is walking. I am now able to go down to the shops with my walker. I have improved my balance a lot. I try and walk fast to get some aerobic exercise as that has been shown in clinical trials to slow the progression of Parkinson’s. I have even seen anecdotal accounts of people improving their symptoms to such and extent that they can stop taking their medication!
There is a catch though. I am in almost constant pain, mostly as a result of dystonia caused by Parkinson’s or the wearing off of the wearing off of the medication. At night when the levodopa levels are low, I also get dystonia in the muscles down my spine. Then there is the neuropathy which common in people with Parkinson’s but it can have other causes. The net result is that my feet are on fire. When I walk it feels like I am walking on Lego blocks.
Although I know I should do things, exercise, etc. I just cannot bring myself to do it. I know that if I just walk through the pain I will feel better for it – easier said than done.
There is a reason for this long explanation. When I get to late afternoon I am really exhausted. So I try and stay up but eventually I just go to bed. I have found that Vicks vaporub helps for the neuropathy so I close door, reeking of Vicks, and go to bed. You would think that the staff would respect that. Oh no, they seem to take delight in bashing to door open, letting the bright lights stream in, and then in their loudest voice announce what they are there for.
I may be exaggerating but the result is the same – I am now wide awake! And falling asleep again after that seems impossible.
I often just get up and do some reading or work.
What I have noticed though is how much the staff rely on smartphones for their work. Now I don’t feel so bad struggling to record the smartphone video lessons. Perhaps if I persist I will get better at it and the staff will get used to it.