Chapter 319 - A few Notes
I think we are both sleeping better since the decision was made not to travel to Pivot City for the wedding. She was afraid of the difficulties to be faced, myself how to help her and minimise her pain and stress. She is waking me less frequently for assistance onto the commode. Early in the week I reverted to positioning our "foldable" commode, without wheels, beside the bed so that she needed less assistance to sit upon it. The replacement chair from the Hospital OT, exchanged for the first one which developed wheel locking problems, is too high for her, for when seated her feet do not touch the floor and often she needed me to lift under her left arm. In consequence, my left fore arm now has pains in it. Fortunately, for a period of several weeks, she is able to walk, well shuffle really, into the bathroom to shower, seated on our shower chair. I rang the Hospital OT about the height of the commode only to learn that she is no longer in the job, but she said she would arrange for someone to visit to check the height of the commode. It seems the first one we had was a low one, most are taller. No mention of the commode "ordered" for us. And no one has phoned or called yet to check their commode. Perhaps we will have to buy our own wheeled commode/shower chair and to hell with assistance.
Tuesday before last one of the Respite staff mentioned to me that she was in difficulties during the day and that the "new" medication was not having much effect. Next day at home she commented that the night and day following each Tuesday Respite were "bad" for her. I noticed the same after Respite this week.
Yesterday she unilaterally decided to reduce the Motilium anti-nausea pills from 3x two to 3x one each day. She has not suffered any nausea feelings.
She has noticed that within seconds of administering a bolus of Apomine that her toes tingle. After a bolus at 4:45am this morning when she woke very stiff and uncomfortable her leg tremors/shakes were undiminished bringing her to the conclusion that the bolus dose had not helped her at all. She also experiences the "someone walked over my grave" feelings (that we now refer to as "myoclonus" rightly or wrongly) following bolus doses. While seated on the commode following this morning's 6am meds, she reported that when her feet were on the floor rather than a pillow, that her insides were "churned up" although she felt better with her heals pressed hard into the floor but then in attempting to return to bed her toes insisted in turning down.
She slept in this morning so the Apomine pump was only started after a shower at the time of her 10am meds. She reported toe tingling before the pump started and afterwards tight bands around her feet. Walking and using the pedals also initiates foot and toe tingles.
Yesterday she commented that her right foot/leg was deteriorating and behaving much like her left.
From last Tuesday's respite she brought home an unassembled doll that had been donated. Since then she has spent 3 to 4 hours each day putting it together and making clothing for it. Several times she has commented that she had assembled pieces of clothing in reverse order or her hands have been unable to manipulate pins.
I re-subscribed her to Lumosity brain training and she has had several sessions without needing to be prompted.
A few days ago from a PD Forum I learnt of an exercise regime specifically for Parkies, and was surprised to find accredited physios in this country, one of which is quite close to the Hot Air City Hospital. So I sent them an email requesting an appointment. Having found YouTube demmos of the techniques I decided that due to balance problems such exercise is best introduced by a professional.
Hopefully the Revolutionary Chair we ordered will be available by next Thursday when next we visit Hot Air City to see Polly the PD nurse, and perhaps the physio at the same time.
Tuesday before last one of the Respite staff mentioned to me that she was in difficulties during the day and that the "new" medication was not having much effect. Next day at home she commented that the night and day following each Tuesday Respite were "bad" for her. I noticed the same after Respite this week.
Yesterday she unilaterally decided to reduce the Motilium anti-nausea pills from 3x two to 3x one each day. She has not suffered any nausea feelings.
She has noticed that within seconds of administering a bolus of Apomine that her toes tingle. After a bolus at 4:45am this morning when she woke very stiff and uncomfortable her leg tremors/shakes were undiminished bringing her to the conclusion that the bolus dose had not helped her at all. She also experiences the "someone walked over my grave" feelings (that we now refer to as "myoclonus" rightly or wrongly) following bolus doses. While seated on the commode following this morning's 6am meds, she reported that when her feet were on the floor rather than a pillow, that her insides were "churned up" although she felt better with her heals pressed hard into the floor but then in attempting to return to bed her toes insisted in turning down.
She slept in this morning so the Apomine pump was only started after a shower at the time of her 10am meds. She reported toe tingling before the pump started and afterwards tight bands around her feet. Walking and using the pedals also initiates foot and toe tingles.
Yesterday she commented that her right foot/leg was deteriorating and behaving much like her left.
From last Tuesday's respite she brought home an unassembled doll that had been donated. Since then she has spent 3 to 4 hours each day putting it together and making clothing for it. Several times she has commented that she had assembled pieces of clothing in reverse order or her hands have been unable to manipulate pins.
I re-subscribed her to Lumosity brain training and she has had several sessions without needing to be prompted.
A few days ago from a PD Forum I learnt of an exercise regime specifically for Parkies, and was surprised to find accredited physios in this country, one of which is quite close to the Hot Air City Hospital. So I sent them an email requesting an appointment. Having found YouTube demmos of the techniques I decided that due to balance problems such exercise is best introduced by a professional.
Hopefully the Revolutionary Chair we ordered will be available by next Thursday when next we visit Hot Air City to see Polly the PD nurse, and perhaps the physio at the same time.
posted by Kilpike | 4:12 pm
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