Chapter 337 - On a Sunny Sunday Morning
Last Sunday I was intent upon taking video clips of the dyskinesias in her feet and legs. But I gave up. She was feeling just too awful. Minimal shaking yet her stomach was in revolt, causing her to retch repeatedly. She had pains, making her think she had diarrhoea, with her head tingling at the same time. At 9.15am I found her on the loo where she remained for an hour, yet had no sign of the "trots". I helped her back to her recliner. She looked whoozy and sleepy. I left her with the large plastic bowl but she never vomited. At 11am she was retching again, felt hot, wanted the sliding door opened for cool air. She had no lunch. At 3pm I found her in the laundry sorting clothes to take her mind off how awful she felt. She had a bread roll lightly spread with margarine for an evening meal. The urine in her leg bag was of a light colour and required frequent emptying by early evening. She was in bed by 8.30pm.
Monday saw a milder repetition of the day before. I encouraged her to do some Wii stepping which did not last long before her left leg tingled, then some passive pedalling. Late in the afternoon to Dr I, our new GP, who wondered whether her recent courses of antibiotics for UTI may be the cause of her stomach problems. He gave her a referral to a urologist up the 4 lane and an appointment has been made for a few weeks time; to discuss her UTI problems, nocturia and a possible supra-pubic catheter as a replacement for the normal type she now uses.
Much the same on Tuesday, almost not going to Respite. She had slept soundly, missing her 2am optional Sinemet. Possibly in consequence at 8.45 she was feeling dippy with a tingling head, which continued with a squeamish stomach even before a breakfast of toast, then on the loo for just wind. She made a call to Batman City where a Kinetigraph Data Logger was being prepared for her to wear to monitor her PD "shakes" 24x7; this has been arranged through Dr M the neurologist. By 9.40 her sick stomach "felt different". More wind on the loo at 10.20am before I took her to Respite, a little late. She seemed to have a reasonable day; yet at 8.45pm as she lay down in bed there was a pain below her ribs on the LHS. When I emptied her leg bag at 9.30pm I realised to 300ml was all she had passed all day. "Walking Over Grave" feelings a little later.
Her legs were aching on Wednesday so no compression stockings for the day; in the afternoon she commented that her toes were tingling. The RN visited mid afternoon. Her urine quantities were OK today; 600ml at 0715, 300ml at 1345, 300ml at 1655 and 300ml at 2115.
Her 2am Sinemet was missed on Thursday; perhaps in consequence she needed assistance to sit on the wheeled shower chair, although I think her 6am meds would have masked any lack of meds so much earlier. Her stomach problems are easing.A driver (courtesy the TACP scheme) came at 10am to take us to an appointment to see Dr M. in Hot Air City. After giving her a usual PD physical he decided against a nerve conduction test planned for this visit. He advised immediately cancelling her afternoon 0.5mg Sifrol, then her morning 0.5 Sifrol in 2 weeks. Home again by 2.30pm I found the Kinetigraph waiting in our letter box. It was attached to her right wrist as instructed, no difficulties have been experienced so far except for the first acknowledgement button press, light flash and buzzing at her 10pm meds. And the device has not been worn into the shower, although almost one morning! On the way home we called at Hot Air Hospital to collect a second Apomine pump as an emergency spare, although I am preparing each pump for use on alternate days. So now I can prepare a pump and its syringe ahead of time then swap pumps with minimal changeover time, since I attach the prepared full one before removing the attached depleted pump; of course I switch one off before starting the other. Anyway, J the Physio arrived later that afternoon and we began showing her how she (my PWP) was able to do some Wii stepping; well for a few steps before her left leg gave was, an, fortunately we caught her before she fell; strange, she shook violently (in fear I suppose) as we grabbed her. No more stepping on the Wii. Physio J inspected her left ankle, noting how the foot turns inward and causes her ankle to tilt outwards; suggests binding the ankle may provide some stress relief on the muscles in the left leg which have become quite sore to finger pressure. She was asleep prior to her 10pm meds, waking after much yelling, kicking, throwing off bed clothes and told me we were all chasing a mouse in her dream.
Friday another day of the above.
Saturday a repeat although her stomach problems may be lessening.
So these days our daily routine begins with disconnecting her overnight catheter bag from the leg bag; placing the Apo pump into its case before sealing the join with adhesive tape then mounting it on an elastic belt around her middle; I prepare breakfast once the TACP lady arrives to shower her (after removal of the kinetigraph from her wrist); leg bag emptying from time to time; sometimes transporting her in the wheelchair between her revolutionary chairs, her recliner and the loo; preparing Apomine pump and swapping pumps after 10pm. When we get the chance she sews items for the "Sheltered Workshop" to sell; I attempt to be creative with my 3D printer; a day of Respite; minimal shopping; regular visits by shower helpers, RNs, physios, social worker plus others. For lunch lately we feast on spuds boiled in their jackets in the microwave, then sliced in two before covering with grated cheese, sour cream plus salsa or pickles; evening meals are often those "healthy" frozen delicacies although I grill fish at least once a week and often chops, snags or supermarket cooked chook. Not much TV, many books (at least for me). Somewhere in the middle of this we still enjoy life a little.
Her current schedule:
Monday saw a milder repetition of the day before. I encouraged her to do some Wii stepping which did not last long before her left leg tingled, then some passive pedalling. Late in the afternoon to Dr I, our new GP, who wondered whether her recent courses of antibiotics for UTI may be the cause of her stomach problems. He gave her a referral to a urologist up the 4 lane and an appointment has been made for a few weeks time; to discuss her UTI problems, nocturia and a possible supra-pubic catheter as a replacement for the normal type she now uses.
Much the same on Tuesday, almost not going to Respite. She had slept soundly, missing her 2am optional Sinemet. Possibly in consequence at 8.45 she was feeling dippy with a tingling head, which continued with a squeamish stomach even before a breakfast of toast, then on the loo for just wind. She made a call to Batman City where a Kinetigraph Data Logger was being prepared for her to wear to monitor her PD "shakes" 24x7; this has been arranged through Dr M the neurologist. By 9.40 her sick stomach "felt different". More wind on the loo at 10.20am before I took her to Respite, a little late. She seemed to have a reasonable day; yet at 8.45pm as she lay down in bed there was a pain below her ribs on the LHS. When I emptied her leg bag at 9.30pm I realised to 300ml was all she had passed all day. "Walking Over Grave" feelings a little later.
Her legs were aching on Wednesday so no compression stockings for the day; in the afternoon she commented that her toes were tingling. The RN visited mid afternoon. Her urine quantities were OK today; 600ml at 0715, 300ml at 1345, 300ml at 1655 and 300ml at 2115.
Her 2am Sinemet was missed on Thursday; perhaps in consequence she needed assistance to sit on the wheeled shower chair, although I think her 6am meds would have masked any lack of meds so much earlier. Her stomach problems are easing.A driver (courtesy the TACP scheme) came at 10am to take us to an appointment to see Dr M. in Hot Air City. After giving her a usual PD physical he decided against a nerve conduction test planned for this visit. He advised immediately cancelling her afternoon 0.5mg Sifrol, then her morning 0.5 Sifrol in 2 weeks. Home again by 2.30pm I found the Kinetigraph waiting in our letter box. It was attached to her right wrist as instructed, no difficulties have been experienced so far except for the first acknowledgement button press, light flash and buzzing at her 10pm meds. And the device has not been worn into the shower, although almost one morning! On the way home we called at Hot Air Hospital to collect a second Apomine pump as an emergency spare, although I am preparing each pump for use on alternate days. So now I can prepare a pump and its syringe ahead of time then swap pumps with minimal changeover time, since I attach the prepared full one before removing the attached depleted pump; of course I switch one off before starting the other. Anyway, J the Physio arrived later that afternoon and we began showing her how she (my PWP) was able to do some Wii stepping; well for a few steps before her left leg gave was, an, fortunately we caught her before she fell; strange, she shook violently (in fear I suppose) as we grabbed her. No more stepping on the Wii. Physio J inspected her left ankle, noting how the foot turns inward and causes her ankle to tilt outwards; suggests binding the ankle may provide some stress relief on the muscles in the left leg which have become quite sore to finger pressure. She was asleep prior to her 10pm meds, waking after much yelling, kicking, throwing off bed clothes and told me we were all chasing a mouse in her dream.
Friday another day of the above.
Saturday a repeat although her stomach problems may be lessening.
So these days our daily routine begins with disconnecting her overnight catheter bag from the leg bag; placing the Apo pump into its case before sealing the join with adhesive tape then mounting it on an elastic belt around her middle; I prepare breakfast once the TACP lady arrives to shower her (after removal of the kinetigraph from her wrist); leg bag emptying from time to time; sometimes transporting her in the wheelchair between her revolutionary chairs, her recliner and the loo; preparing Apomine pump and swapping pumps after 10pm. When we get the chance she sews items for the "Sheltered Workshop" to sell; I attempt to be creative with my 3D printer; a day of Respite; minimal shopping; regular visits by shower helpers, RNs, physios, social worker plus others. For lunch lately we feast on spuds boiled in their jackets in the microwave, then sliced in two before covering with grated cheese, sour cream plus salsa or pickles; evening meals are often those "healthy" frozen delicacies although I grill fish at least once a week and often chops, snags or supermarket cooked chook. Not much TV, many books (at least for me). Somewhere in the middle of this we still enjoy life a little.
Her current schedule:
posted by Kilpike | 12:41 pm
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