Chapter 326 - Commuting
Busy this week commuting to and from Hot Air City particularly for her appointments with Neurospace for LSVT BIG training. (I'm sure they won't mind my spelling the name in "clear") Although on Thursday an appointment with the Private Neurologist, who hasn't seen her in about a year, due to the referral to the Considerate Neuro & Polly the PD Nurse at Hot Air City Hospital. The Private Neuro thought she showed improvement. He was concerned about the tingles and pain in her feet, the lack of temperature regulation in her feet, referring to the symptoms as neuropathy and decided he should do some nerve conduction tests on her feet at her next visit in 3 months time. So obviously the symptoms are not serious enough to require immediate attention.
When we described her "double vision" (Have I mentioned this here? It has seemed only a matter of needing a new prescription for glasses until I asked her to describe the symptoms in detail) the Private Neuro quickly checked whether Apomine may have such a side effect; but not so. In quizzing her, I think she sees a secondary image displaced vertically below, say, a line of text on a screen but the effect may not be as evident for images of horizontal bars. The secondary image is not displaced horizontally. The effect is seen with either eye covered or neither covered. Yet she continues to read a 500+ page Penny Dreadful of fine print, presumably with little difficulty, even in poor light. Her view of an Amsler grid sounds OK to me. She has had difficulty threading needles for hand sewing, so after a helpful therapist mentioned needles with slotted eyes I bought her a packet. She finds them very helpful, although this morning she told me that she saw two threads of cotton and two needles as she sewed some bright blue fabric. I made an appointment for her to see our local optometrist next Wednesday. I am concerned, apart from any thing else, that her vision may contribute badly to her walking stability.
She has taken to the LSVT BIG sessions perhaps not with gusto, but her normal movements have improved, becoming larger, especially her foot steps. She tires easily, especially her left leg, but the physios take good care that she doesn't fall. Under their guidance, she has now walked from the buildings out to the car WITHOUT relying on her walker (I am relegated to pushing it). She is finding getting into and out of the car easier; some real life difficulties are part of the training regime, even to dressing herself and rolling in bed. I expected her to feel sore and worn out after each session and except for some muscle discomfort in her shoulder area (which may be due to pulling-pushing herself in bed or chairs which is to be discouraged) I don't think she suffers from the sessions. I have downloaded several YouTube video clips to guide her when she performs "homework" sessions. Perhaps she has more confidence during the training sessions; at home she has so far only partly completed the exercises while watching the clips for guidance because her left leg tends to drag and give way. Three weeks each of 4 daily sessions to go.
On Friday we saw the local hospital physio for transfer assistance training. Some additional exercises for her to do, such as ham string stretching, gentle squats and shoulder movements.
I have been puzzled that she performs much better on those days we go out; yet poorly on weekends when we are usually home. Cabin fever? Last Sunday I videoed her every half hour or so, a burden to both of us, to make another DVD of a "bad day". I didn't get around to compiling the clips into one video with time stamps prior to seeing the Private Neuro and I don't think I will bother now; not even for Polly the PD Nurse, since I am positive there have been improvements in her condition through this week. Last Sunday is history. I am sure the dystonia and dyskenisia in her legs and feet have reduced hopefully due to the small increase from 6.5ml to 7.0ml Apomine. Are we making progress or are we making progress?
Last evening, Saturday, we needed the usual odds and ends from the supermarket so she came with me, deciding to walk with me (this was also a homework exercise from Neurospace) while I spent a few hundred dollars. She quickly felt unstable, sitting on her walker just inside near the bakery area while I grabbed a few vegetables. After that short rest she decided to push the supermarket trolley but that became inconvenient for me pushing her walker and picking items off the shelves. Swapping our vehicles again, we then proceeded around the shop, not bothering to walk the full length of some aisles, then she waited outside while I went through the checkout. She walked all the way back to the car.
Except for last night, I have been sleeping well. So this morning I was somewhat sluggish, not rising soon enough to finish a shower before the Apo pump ran out, beeping all the while. After my shower, as I killed its beeping and removed the infusion needle, she said that a few minutes before, as the Apo pump displayed "End" in its little window she experienced "tingling" in her right hand and fingers, and the feelings had decreased and ceased by the time I removed the infusion needle. I suggested perhaps she had laid on her right arm but she said not so.
This morning, in between OFF periods, some exercises for her and hand sewing.
When we described her "double vision" (Have I mentioned this here? It has seemed only a matter of needing a new prescription for glasses until I asked her to describe the symptoms in detail) the Private Neuro quickly checked whether Apomine may have such a side effect; but not so. In quizzing her, I think she sees a secondary image displaced vertically below, say, a line of text on a screen but the effect may not be as evident for images of horizontal bars. The secondary image is not displaced horizontally. The effect is seen with either eye covered or neither covered. Yet she continues to read a 500+ page Penny Dreadful of fine print, presumably with little difficulty, even in poor light. Her view of an Amsler grid sounds OK to me. She has had difficulty threading needles for hand sewing, so after a helpful therapist mentioned needles with slotted eyes I bought her a packet. She finds them very helpful, although this morning she told me that she saw two threads of cotton and two needles as she sewed some bright blue fabric. I made an appointment for her to see our local optometrist next Wednesday. I am concerned, apart from any thing else, that her vision may contribute badly to her walking stability.
She has taken to the LSVT BIG sessions perhaps not with gusto, but her normal movements have improved, becoming larger, especially her foot steps. She tires easily, especially her left leg, but the physios take good care that she doesn't fall. Under their guidance, she has now walked from the buildings out to the car WITHOUT relying on her walker (I am relegated to pushing it). She is finding getting into and out of the car easier; some real life difficulties are part of the training regime, even to dressing herself and rolling in bed. I expected her to feel sore and worn out after each session and except for some muscle discomfort in her shoulder area (which may be due to pulling-pushing herself in bed or chairs which is to be discouraged) I don't think she suffers from the sessions. I have downloaded several YouTube video clips to guide her when she performs "homework" sessions. Perhaps she has more confidence during the training sessions; at home she has so far only partly completed the exercises while watching the clips for guidance because her left leg tends to drag and give way. Three weeks each of 4 daily sessions to go.
On Friday we saw the local hospital physio for transfer assistance training. Some additional exercises for her to do, such as ham string stretching, gentle squats and shoulder movements.
I have been puzzled that she performs much better on those days we go out; yet poorly on weekends when we are usually home. Cabin fever? Last Sunday I videoed her every half hour or so, a burden to both of us, to make another DVD of a "bad day". I didn't get around to compiling the clips into one video with time stamps prior to seeing the Private Neuro and I don't think I will bother now; not even for Polly the PD Nurse, since I am positive there have been improvements in her condition through this week. Last Sunday is history. I am sure the dystonia and dyskenisia in her legs and feet have reduced hopefully due to the small increase from 6.5ml to 7.0ml Apomine. Are we making progress or are we making progress?
Last evening, Saturday, we needed the usual odds and ends from the supermarket so she came with me, deciding to walk with me (this was also a homework exercise from Neurospace) while I spent a few hundred dollars. She quickly felt unstable, sitting on her walker just inside near the bakery area while I grabbed a few vegetables. After that short rest she decided to push the supermarket trolley but that became inconvenient for me pushing her walker and picking items off the shelves. Swapping our vehicles again, we then proceeded around the shop, not bothering to walk the full length of some aisles, then she waited outside while I went through the checkout. She walked all the way back to the car.
Except for last night, I have been sleeping well. So this morning I was somewhat sluggish, not rising soon enough to finish a shower before the Apo pump ran out, beeping all the while. After my shower, as I killed its beeping and removed the infusion needle, she said that a few minutes before, as the Apo pump displayed "End" in its little window she experienced "tingling" in her right hand and fingers, and the feelings had decreased and ceased by the time I removed the infusion needle. I suggested perhaps she had laid on her right arm but she said not so.
This morning, in between OFF periods, some exercises for her and hand sewing.
posted by Kilpike | 1:00 pm
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