Since Chad’s seizure in May, I haven’t had much to share. Things have been relatively quiet on the Chad front.
He is having a few issues, but nothing completely unexpected.
Some days are better than others, and we just deal with it. Everyday is a new normal.
Chad has had a problem with his right side (arm & leg) for quite a while. Neither of us feel he fully regained his strength after his tumor resection in March 2009, despite frequently passing the routine neuro evaluations for strength control.
He has tremor-like movements in his right hand daily. If he were to hold a sheet of paper in his right hand as still as he possibly could, it would still wave as if a breeze were blowing.
His right leg and foot have started to behave a little (more) erratically since the May seizure.
When we saw his neurologist at the end of May, she finally diagnosed him with Apraxia on his right side; which is a disorder of motor planning. It’s caused by damage to specific areas of the brain, characterized by loss of the ability to execute or carry out learned purposeful movements.
He has a hard time going up and down stairs, as he just cannot make his right foot move the way it should. This means he trips and sometimes falls; and he fell quite a bit last week.
Although I don’t see it in the immediate future, I think having a cane of walker will be very beneficial in time. There is nothing we can do about the Apraxia; we just have to recognize (and remember) Chad’s limits. The lack of motor control is more exaggerated when he is over-tired, for example.
Chad’s memory is still patchy. He remembers lots of things for different reason ans associations; and sometimes it baffles me what he actually does remember versus what he does not. The brain is a tricky, tricky thing!
He is having some increased difficulty remembering his medications, their purposes, his medication schedule and ordering schedule.
I try to give him as much autonomy as possible with his medications, and I check behind him frequently.
With the addition of new meds and changes in ongoing drugs last month, he has just been a little more confused.
He has been organizing his pills in a pill box since this journey began in November 2007; but it’s getting a little complicated.
Last week, I made us each a list of his current medications, dosages and schedules for each of our wallets. I just couldn’t remember all the changes recently, and felt it best to have a list to hand to the nurses when they ask for changes in meds.
Just this morning, I made a new list for Chad to tape to his medication locker.
It lists each medication and how many pills equal the proper dose. There are two columns for AM and PM, so I hope this will help him feel more in control of counting out his medications. And I will feel better when I double-check behind him.
The ordering part is driving me crazy. I wish I could order everything on one specific day of the month. It’s just not working out that way – yet.
We venture to Winston-Salem next Tuesday (June 29) for another MRI and a discussion with Dr. T.
We still have so many questions about Chad’s current state of health and mental clarity — and I’m growing increasingly frustrated with the lack of answers (or a plan of action).
Thank you for your continued prayers, support and positive thoughts.