Chapter 347 - A Lost Cause
"I'm just a lost cause" she said as we drove away from Dr M's rooms in Hot Air City today.
Both of us had a bad night last night, were running behind when the Personal Care lady arrived at 8am to shower and dress her; gracefully gave us some assistance moving her from the bed onto the commode/shower chair; overnight nappy still in place, so she had to attempt to partially stand while I tugged at the nappy, pulling it forwards and after several attempts, dumped it in the waste basket. After the shower, the Personal Carer called me to help move her from the commode to a seated position on the bed for dressing. Then again onto the wheel chair to be able to wheel her out to her breakfast of toast, banana, a glass of grape juice (which she didn't touch) and one of those small drinks full of good bacteria.
She needed the wheel chair to take her into the garage to the car. We left home about 0930, arrived in Hot Air City half an hour early for the 1115 appointment, half the trip in fog, stressful for her. I took her into the waiting room immediately because she had enough mobility to slip from car seat to her walker with little trouble.
Once in his consulting room Dr M thought she looked better than when he last saw her. Perhaps that was a couple of weeks ago when I think she said he poked his head into the ward when the hospital residents were talking to her; otherwise, he has a photographic memory. He spoke of the benefit of her reduced Sinemet intake while I attempted to point out that her mobility was worse. However, the tingling and burning in her feet and legs had reduced. Being a smart arse, I asked her to stand from her walker and after 3 or 4 attempts she managed to do so without assistance, before shuffling to the door and returned to sit again in the walker; he was impressed that she moved so well; I was disappointed she walked so well. He asked how she got to take so much Sinemet because it was not at his direction. I told him Dr D. (at the hospital) who I believed worked up her medication level to prove it ineffective before putting her on Apomorphine, and that gradually her Comtan and Sifrol intake was then reduced to zero. I can only wonder why his records of her meds intake do not reflect this. I handed him her current schedule which he may have transcribed into his system. He was typing a lot. He asked how much Apomorphine she was taking, "12 mls" I replied, "how many units is that?" he asked, I replied "I only deal in mls". What in hell's name do people think I am, some sort of expert because I administer Apomorphine at home as well as in two hospitals when the staff were too "busy" to take care of her???? I just draw the solution out of ampoules into a calibrated syringe!! He repeated that the Sinemet reductions had benefited her; I pointed out that for some time, maybe 2 hours, before each 4 hour dose of Sinemet 100/25 she was looking forward to the next dose. She affirmed this. So he said take another Sinemet 100/25 at the 2 hour point, making it 9x Sinemet 100/25 daily. Then both she and I mentioned the necessity of taking doses at 2am and 4am (prescribed by the last hospital visit) when other professionals suggest we both need uninterrupted sleep, the reason for the incontinence pants at night. I think he agreed but now I'm unsure whether he was suggesting those two doses be eliminated. The consultation was on the point of winding up when we mentioned her feet and legs were insensitive to gentle touching with my fingers but she was able to detect pressure from my finger nails. Also, a few days ago she asked me whether the floor tiles in the bathroom were cold because she could not feel the tiles on her bare feet. Dr M. grabbed a very large tuning fork ( must be only a few Hz, no tone was audible), tested it on her arm where she was able to feel the vibrations yet not on her lower leg. He commented that the dystonia in her left foot was just "a symptom of Parkinsons" and could be treated with Botox for $500 a time, perhaps lasting for 3 months but could not be guaranteed of success. He was non-committal when asked about the referral to the Parky crowd in the west of Big Smoke City. Mention of nerve conduction testing returned the comment "If necessary, we can do this next time, only takes 10 minutes. I'll see you in 3 months" and we were out the door and he was welcoming a Big Pharma rep that had been waiting patiently. We were not offered his usual sub-continental handshake.
We ate some McDonald's in the car on the outskirts of Hot Air City. She was not capable of leaving the car. Same on arrival home; wheel chair straight to the toilet for poop, then wheel chaired to the back room where she could not be transferred onto her recliner. About half an hour after taking 4pm meds she was able to do so with my help, of course. Out in my dungeon typing these notes I heard her yell out; rushed into her, but she said she only yawned. Back to typing, phone rang, just her ringing on the VOIP phone to ask for a cardigan, she was cold, and her trolley with the CB radio on it was too far away for her to reach it. Some time later she said she was still cold, and yawning, so I took a small oil heater into her and shut the sliding doors.
Shortly after arriving home a call from the office of the neuro in the west of Big Smoke City to say she could see Dr F. in September or earlier to see someone else. She queried me; "Someone else" I said, thinking let's get this over and done with. She now has an appointment for 10am Thursday July 3rd. Now to figure out how to get there; drive up the day before to stay in a motel nearby for one or two nights; she is not keen on this idea, not knowing what so-called disabled facilities the motel may have. I will see whether the Care place can offer a round day trip under the Level 2 package we are now signed up members of.
Back to nerve conduction testing. On her last visit to Dr M. she was to have a test, but he said on that day "Perhaps next time." Then on leaving the public hospital a couple of weeks ago after her "assessment" she was given a card advising that an appointment had been made for her for an outpatient nerve conduction test on June 23rd at 9:30am. A letter dated 5th June, the day after leaving the hospital, then advised her that the appointment had been cancelled because Dr M intended to do the test in his rooms. Yet today he was not interested in the test. That totals 3 proposed but not performed nerve conduction tests. Is there something painful or ominous about these tests? In the referral letter from Hot Air City hospital to the one at Big Smoke, mention is made of the proposed tests. Also that the apomorphine "dose will be weaned following this admission". So far no one has mentioned the rate of said "weaning", and I forgot to raise the issue at today's appointment. Perhaps a FAX tomorrow for Dr M. to clarify the weaning.
So now we are to embark on another round of enlightening more neuros and associates of the 23 year long experiences of an atypical Parky patient. Perhaps that arrogant neuro over in Black Swan City that told her to "stop shopping around for a neurologist to fix your problems and just learn to live with it" was correct. Maybe he was right, none of them have been of much help, seeming to ignore the whole person, intent upon treating the obvious issues that fall within their narrow view of their job. Years ago, in the computer business, I can remember the catch phrase "Think beyond the fix"; I wonder whether medicos think likewise? I am sure most don't - "take another pill and see you in 3 months".
In the middle of the last paragraph (about 1745) she called me on the CB; needed help to the loo. I helped her stand from her recliner, she shuffled pushing her trolley, I pulled her pants down while she hung on the fireman's pole before she sat. A short one this time; she held the pole while I pulled her pants up again, then she had to sit on the toilet again before attempting to stand again (sometimes it takes 3 or 4 stands/sits before I put up her clothes and adjust the elastic tops not to apply pressure to the infusion site).
She couldn't stand this time, she sobbed, she didn't want the wheel chair (she sees that as failure) yet after several minutes of attempting to stand she admitted defeat and I brought in the wheel chair. Why can't the professionals assess a PD patient at such times, why can't they pull down pants, why can't they pull up pants then wash their hands to remove touches of wetness, and on and on it goes. Short bursts of observation up to 3 months apart are irrelevant and misleading. And the recent assessment of her behaviour in the Hot Air City hospital was a waste of time because the nursing staff were too busy to observe one patient out of many when they were tasked with important matters such as wound dressing, dishing out medications, taking vital sign readings, toilet assistance, bed making, completing mountains of paper work etc etc for many other patients to be concerned with noting down at regular intervals, even hourly, observations about one patient.
So says the frustrated carer of another lost cause. We know there is no "fix", even years ago when prophets said in 5 or 10 years time there would be. In many ways for unknown reasons her quality of life (and mine) is much better than others I read about (on certain forums) or see in real life. May it remain so.
Both of us had a bad night last night, were running behind when the Personal Care lady arrived at 8am to shower and dress her; gracefully gave us some assistance moving her from the bed onto the commode/shower chair; overnight nappy still in place, so she had to attempt to partially stand while I tugged at the nappy, pulling it forwards and after several attempts, dumped it in the waste basket. After the shower, the Personal Carer called me to help move her from the commode to a seated position on the bed for dressing. Then again onto the wheel chair to be able to wheel her out to her breakfast of toast, banana, a glass of grape juice (which she didn't touch) and one of those small drinks full of good bacteria.
She needed the wheel chair to take her into the garage to the car. We left home about 0930, arrived in Hot Air City half an hour early for the 1115 appointment, half the trip in fog, stressful for her. I took her into the waiting room immediately because she had enough mobility to slip from car seat to her walker with little trouble.
Once in his consulting room Dr M thought she looked better than when he last saw her. Perhaps that was a couple of weeks ago when I think she said he poked his head into the ward when the hospital residents were talking to her; otherwise, he has a photographic memory. He spoke of the benefit of her reduced Sinemet intake while I attempted to point out that her mobility was worse. However, the tingling and burning in her feet and legs had reduced. Being a smart arse, I asked her to stand from her walker and after 3 or 4 attempts she managed to do so without assistance, before shuffling to the door and returned to sit again in the walker; he was impressed that she moved so well; I was disappointed she walked so well. He asked how she got to take so much Sinemet because it was not at his direction. I told him Dr D. (at the hospital) who I believed worked up her medication level to prove it ineffective before putting her on Apomorphine, and that gradually her Comtan and Sifrol intake was then reduced to zero. I can only wonder why his records of her meds intake do not reflect this. I handed him her current schedule which he may have transcribed into his system. He was typing a lot. He asked how much Apomorphine she was taking, "12 mls" I replied, "how many units is that?" he asked, I replied "I only deal in mls". What in hell's name do people think I am, some sort of expert because I administer Apomorphine at home as well as in two hospitals when the staff were too "busy" to take care of her???? I just draw the solution out of ampoules into a calibrated syringe!! He repeated that the Sinemet reductions had benefited her; I pointed out that for some time, maybe 2 hours, before each 4 hour dose of Sinemet 100/25 she was looking forward to the next dose. She affirmed this. So he said take another Sinemet 100/25 at the 2 hour point, making it 9x Sinemet 100/25 daily. Then both she and I mentioned the necessity of taking doses at 2am and 4am (prescribed by the last hospital visit) when other professionals suggest we both need uninterrupted sleep, the reason for the incontinence pants at night. I think he agreed but now I'm unsure whether he was suggesting those two doses be eliminated. The consultation was on the point of winding up when we mentioned her feet and legs were insensitive to gentle touching with my fingers but she was able to detect pressure from my finger nails. Also, a few days ago she asked me whether the floor tiles in the bathroom were cold because she could not feel the tiles on her bare feet. Dr M. grabbed a very large tuning fork ( must be only a few Hz, no tone was audible), tested it on her arm where she was able to feel the vibrations yet not on her lower leg. He commented that the dystonia in her left foot was just "a symptom of Parkinsons" and could be treated with Botox for $500 a time, perhaps lasting for 3 months but could not be guaranteed of success. He was non-committal when asked about the referral to the Parky crowd in the west of Big Smoke City. Mention of nerve conduction testing returned the comment "If necessary, we can do this next time, only takes 10 minutes. I'll see you in 3 months" and we were out the door and he was welcoming a Big Pharma rep that had been waiting patiently. We were not offered his usual sub-continental handshake.
We ate some McDonald's in the car on the outskirts of Hot Air City. She was not capable of leaving the car. Same on arrival home; wheel chair straight to the toilet for poop, then wheel chaired to the back room where she could not be transferred onto her recliner. About half an hour after taking 4pm meds she was able to do so with my help, of course. Out in my dungeon typing these notes I heard her yell out; rushed into her, but she said she only yawned. Back to typing, phone rang, just her ringing on the VOIP phone to ask for a cardigan, she was cold, and her trolley with the CB radio on it was too far away for her to reach it. Some time later she said she was still cold, and yawning, so I took a small oil heater into her and shut the sliding doors.
Shortly after arriving home a call from the office of the neuro in the west of Big Smoke City to say she could see Dr F. in September or earlier to see someone else. She queried me; "Someone else" I said, thinking let's get this over and done with. She now has an appointment for 10am Thursday July 3rd. Now to figure out how to get there; drive up the day before to stay in a motel nearby for one or two nights; she is not keen on this idea, not knowing what so-called disabled facilities the motel may have. I will see whether the Care place can offer a round day trip under the Level 2 package we are now signed up members of.
Back to nerve conduction testing. On her last visit to Dr M. she was to have a test, but he said on that day "Perhaps next time." Then on leaving the public hospital a couple of weeks ago after her "assessment" she was given a card advising that an appointment had been made for her for an outpatient nerve conduction test on June 23rd at 9:30am. A letter dated 5th June, the day after leaving the hospital, then advised her that the appointment had been cancelled because Dr M intended to do the test in his rooms. Yet today he was not interested in the test. That totals 3 proposed but not performed nerve conduction tests. Is there something painful or ominous about these tests? In the referral letter from Hot Air City hospital to the one at Big Smoke, mention is made of the proposed tests. Also that the apomorphine "dose will be weaned following this admission". So far no one has mentioned the rate of said "weaning", and I forgot to raise the issue at today's appointment. Perhaps a FAX tomorrow for Dr M. to clarify the weaning.
So now we are to embark on another round of enlightening more neuros and associates of the 23 year long experiences of an atypical Parky patient. Perhaps that arrogant neuro over in Black Swan City that told her to "stop shopping around for a neurologist to fix your problems and just learn to live with it" was correct. Maybe he was right, none of them have been of much help, seeming to ignore the whole person, intent upon treating the obvious issues that fall within their narrow view of their job. Years ago, in the computer business, I can remember the catch phrase "Think beyond the fix"; I wonder whether medicos think likewise? I am sure most don't - "take another pill and see you in 3 months".
In the middle of the last paragraph (about 1745) she called me on the CB; needed help to the loo. I helped her stand from her recliner, she shuffled pushing her trolley, I pulled her pants down while she hung on the fireman's pole before she sat. A short one this time; she held the pole while I pulled her pants up again, then she had to sit on the toilet again before attempting to stand again (sometimes it takes 3 or 4 stands/sits before I put up her clothes and adjust the elastic tops not to apply pressure to the infusion site).
She couldn't stand this time, she sobbed, she didn't want the wheel chair (she sees that as failure) yet after several minutes of attempting to stand she admitted defeat and I brought in the wheel chair. Why can't the professionals assess a PD patient at such times, why can't they pull down pants, why can't they pull up pants then wash their hands to remove touches of wetness, and on and on it goes. Short bursts of observation up to 3 months apart are irrelevant and misleading. And the recent assessment of her behaviour in the Hot Air City hospital was a waste of time because the nursing staff were too busy to observe one patient out of many when they were tasked with important matters such as wound dressing, dishing out medications, taking vital sign readings, toilet assistance, bed making, completing mountains of paper work etc etc for many other patients to be concerned with noting down at regular intervals, even hourly, observations about one patient.
So says the frustrated carer of another lost cause. We know there is no "fix", even years ago when prophets said in 5 or 10 years time there would be. In many ways for unknown reasons her quality of life (and mine) is much better than others I read about (on certain forums) or see in real life. May it remain so.
posted by Kilpike | 6:35 pm
0 Comments:
Post a Comment
<< Home