So many questions, so few answers
Getting Gilly dressed and out of the house today was like trying to pour frozen molasses, or so it seemed to me. I do not assist him with what he can do for himself, but it is difficult to resist, especially when the clock is ticking and we have an important appointment. His right hand is giving him a hard time; he hardly uses it at all. He has trouble lifting that same arm past his chest, as if it weighs 100 pounds. The situation worsens daily in this regard.
We arrived at the Neuro miraculously on time, and were ushered in to Robert, the O.T.’s office immediately. The assessment procedure took almost 2 hours. I had to leave at some point, because I didn’t want Gilly to see the welling up of tears in my eyes during the question period; Gilly is no longer aware of the date, his own age, etc. Robert was kind enough to ask if I wanted to leave. At first I refused the offer, saying I’ve heard it all before, but this time it was just too painful. Robert seems to know me better than I know myself.
The bottom line is that Gilly requires some further adaptations so as to retain is current level of independence in terms of self-care (which isn’t much to begin with). We were given exercises to enhance his deteriorating fine-motor control. Robert is requesting that Lethbridge (a rehabilitation center) service him. They will look into his language deficits there as well. He used the term Aphasia, but is not sure what is actually going on.
He also threw out the term Apraxia. I asked if he thinks this has something to do with his speech. We discussed his difficulties with motor planning. He is unsure if his speech problems have anything to do with motor issues.
He examined Gilly’s swallowing (food and drink) and discovered that the right side of his mouth is impaired as well. He provided some suggestions for eating.
He had a look at Gilly’s peripheral vision, and provided ideas for encouraging Gilly to turn his head and look to the right, so as to see what is hidden from his view (which seems to be the opposite strategy suggested by the optometrist at the MAB. Robert believes that with enough prompting and practice, it may become part of his repertoire; an automatic compensatory strategy.
He will contact our local CSSS and provide them with his report, which ought to spur them on to the next step; reassessing our situation and adding on or expanding services we are in need of at this point. He suggested that Brad help us to apply for a grant to subsidize our necessary home renovations.
Robert mentioned that he will see us every few months to monitor Gilly’s progress. He informed us that he works 5 days a week from 9 to 5 and is willing to see us at anytime. I’m not really sure what the nature of a visit at our request would be, since he does not do the actual ‘therapy’ it seems, but I intend to find out.
We went home for lunch and then it was off again; this time to Physio. Thi examined Gilly’s right side very carefully today. He said that the isolated muscle groups are still functioning, but coordination of movement is seriously impaired. He too used the term ‘motor planning.’ He suggests that Gilly begin using a cane, and urged us to continue attending physio sessions (which I for one am thankful we have). He gave us a few pointers for using the cane to support himself and prevent falling. i have been trying to get Gilly to use the cane for over a week now, but to no avail.
Gilly is rejecting the idea of using the cane, insisting on using only his left hand for everything, balking at my insistence to accompany him down the stairs and refusing to take a shower with the aid of the new transfer bench (but he did agree to look at it and try it out fully clothed; that’s progress, I suppose). The only battle I won today was escorting him downstairs this afternoon and then again this evening. He is becoming downright feisty (a familiar behaviour, but exceptionally hard to deal with in this case).
I have to wonder if the Temodal is doing any good. Is this what one would describe as ‘controlling the disease’? I think not. We will see Dr. Kavan next week, at which time I will ask him to re-evaluate Gilly’s medical status. There is another MRI scheduled for December 12th. Perhaps it can be done sooner. Would changes of this nature show up on an MRI?
We arrived at the Neuro miraculously on time, and were ushered in to Robert, the O.T.’s office immediately. The assessment procedure took almost 2 hours. I had to leave at some point, because I didn’t want Gilly to see the welling up of tears in my eyes during the question period; Gilly is no longer aware of the date, his own age, etc. Robert was kind enough to ask if I wanted to leave. At first I refused the offer, saying I’ve heard it all before, but this time it was just too painful. Robert seems to know me better than I know myself.
The bottom line is that Gilly requires some further adaptations so as to retain is current level of independence in terms of self-care (which isn’t much to begin with). We were given exercises to enhance his deteriorating fine-motor control. Robert is requesting that Lethbridge (a rehabilitation center) service him. They will look into his language deficits there as well. He used the term Aphasia, but is not sure what is actually going on.
He also threw out the term Apraxia. I asked if he thinks this has something to do with his speech. We discussed his difficulties with motor planning. He is unsure if his speech problems have anything to do with motor issues.
He examined Gilly’s swallowing (food and drink) and discovered that the right side of his mouth is impaired as well. He provided some suggestions for eating.
He had a look at Gilly’s peripheral vision, and provided ideas for encouraging Gilly to turn his head and look to the right, so as to see what is hidden from his view (which seems to be the opposite strategy suggested by the optometrist at the MAB. Robert believes that with enough prompting and practice, it may become part of his repertoire; an automatic compensatory strategy.
He will contact our local CSSS and provide them with his report, which ought to spur them on to the next step; reassessing our situation and adding on or expanding services we are in need of at this point. He suggested that Brad help us to apply for a grant to subsidize our necessary home renovations.
Robert mentioned that he will see us every few months to monitor Gilly’s progress. He informed us that he works 5 days a week from 9 to 5 and is willing to see us at anytime. I’m not really sure what the nature of a visit at our request would be, since he does not do the actual ‘therapy’ it seems, but I intend to find out.
We went home for lunch and then it was off again; this time to Physio. Thi examined Gilly’s right side very carefully today. He said that the isolated muscle groups are still functioning, but coordination of movement is seriously impaired. He too used the term ‘motor planning.’ He suggests that Gilly begin using a cane, and urged us to continue attending physio sessions (which I for one am thankful we have). He gave us a few pointers for using the cane to support himself and prevent falling. i have been trying to get Gilly to use the cane for over a week now, but to no avail.
Gilly is rejecting the idea of using the cane, insisting on using only his left hand for everything, balking at my insistence to accompany him down the stairs and refusing to take a shower with the aid of the new transfer bench (but he did agree to look at it and try it out fully clothed; that’s progress, I suppose). The only battle I won today was escorting him downstairs this afternoon and then again this evening. He is becoming downright feisty (a familiar behaviour, but exceptionally hard to deal with in this case).
I have to wonder if the Temodal is doing any good. Is this what one would describe as ‘controlling the disease’? I think not. We will see Dr. Kavan next week, at which time I will ask him to re-evaluate Gilly’s medical status. There is another MRI scheduled for December 12th. Perhaps it can be done sooner. Would changes of this nature show up on an MRI?
posted by Gilly at 9:00 PM
1 Comments:
TREAT..
See you tomorrow.
...Happy Halloween....
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