Chapter 262 - Fear of Change
It was after 4pm last Thursday when we saw the PD nurse at the General Hospital in Hot Air City. The appointment had been made for 3:30pm, she was running late processing patients, a good thing if she was giving extended attention to her patients, as she obviously was, for we left her at 5:30pm.
So that day was a long and tiring one for us, commencing by picking up a PD friend at 10am to take to our local PD group meeting. That friend lost her live-in carer so has no transport - she has a car but is unable to drive. Our meeting was addressed by two nurses from our local district nursing team, although are not PD knowledgeable. An informative meeting, probably providing the district nurses with some future work, assuming the State government does not apply funding cut-backs.
After returning the friend home we headed toward Hot Air City, stopping on the edge of town at a MacDonald's, since it was lunch time and because it was raining I did not want her to walk through the rain, so we ate in the vehicle, something we must not do since we both dribbled hamburger juice down our clothes. I had forgotten to collect paper napkins so we had to rely on a box of tissues.
She used her walker for the long slog between the high rise car park and the bowels of the hospital. Fortunately it was not raining. On this visit I checked with the secretary that our appointment was valid, it was, unlike last time when we learned that the PD nurse had been ill. We sat out in a general waiting area until appointment time, having arrived an hour early. Then we waited in the small reception area for almost an hour. By this stage I was beginning to feel grumpy.
I immediately had the impression that the PD nurse was officious and blunt, as she herded her toward the office, watching (to be expected) her shuffle along behind her walker, then upbraided her, in a Matronly fashion, for not backing up against the chair she was directed to sit in, before flopping into that chair. I thought "This nurse thinks she is a recently diagnosed PD patient, without experience." As the interview progressed I changed my opinion. I shall call the PD nurse "Jane" for very obscure reasons.
Jane began asking for medical history. As always, we have trouble remembering the details & dates; I should have brought a typed list of all her history, for verbally, from memory, details are given disjointedly, out of sequence, actual medical terms are forgotten and the whole is prone to error. For this appointment we went armed with her current meds regime and a diary of ON-OFF times for 3 days at the beginning of the week. Jane possibly thought me a pedantic twit. Jane seemed surprised that she spent almost half each day "OFF" and her effective levodopa intake was about 50% more than was considered the upper limit in the UK (Jane is a Pom). Jane continued to ask questions about activities, falls, bodily functions etc etc all the while entering information into a database which returned scores for various aspects of her PD. To my understanding she scored well considering she was diagnosed 21 years ago, although I can't remember exactly what the scores related to, although Jane seemed intrigued by the results from someone with "early onset" after so many years. YES!!! I didn't realise it on the day, but we saw Jane on 13th September, the date in September 1991 when she was given the awful news.
Jane was of the opinion that she may benefit greatly from using an apomorphine pump, something we have a natural fear of, inserting a needle into the body. Even DBS was suggested. She is very uncomfortable about both approaches, especially the latter. We left Jane having made an appointment for 6 months time unless she decides to proceed with an apomorphine trial, in which case she has to contact her neurologist for a referral to consult with another doctor associated with Jane to carry out the trial, so if she does decide to proceed, then she will be hospitalised for some days in about 3 months time. So the ball is fearfully in her court. She remembers the apomorphine trial she experienced over West when an initial 1mg test dose sent her to "sleep" for about 4 hours, causing the test to be discontinued. Anyway, I was very pleased with our meeting with Jane for she was the first person I had spoken to in 21 years (I didn't have contact with the PD nurse in the West) who had a full understanding of the feelings, behaviour, problems, and medication issues of a Parky patient, and that includes neurologists, general practitioners and even PD patients. And I thought my idea of a "fireman's pole" in front of the toilet was unknown to anyone, yet Jane was aware of such an idea, there is nothing new ....
Back home I spent an evening locating information about apomorphine, its side effects, pump usage, costs etc., printed out a bundle & left the lot for her to read. She has decided she will not proceed with a trial. She says she had made notes or marked the print outs with her reasons. We are yet to have another talk about all this. Before that I must search for written personal experiences using an apomorphine pump and failing that, or in addition to, asking Jane to arrange a meeting between us and a user of the device. The reader may be unaware that the pump is a battery powered pump (clipped to a belt or kept in a pocket) attached to a cylinder of fluid with a fine hose attached feeding a needle inserted in the skin of the stomach, or upper thighs, or shoulders. The position of the needle is changed each day to avoid complications. She would probably require normal meds during the night although some patients keep the pump attached 24 hours each day.
Her inability to rise from a seated position, to walk easily, feet freezing, continues. A couple of days ago she called me (perhaps on the CB, I don't remember) and I found her cowering in the corner between the vanity cupboard and the wall, too afraid to cross the short distance to the fireman's pole in front of the toilet. When going "OFF", her tremors begin, triggering her bladder, her feet freeze usually too close together, she fears falling, "talks" to her feet for them to move, and when very frighted she breathes in bursts through her nose, making short mewling noises in her throat. Last night at some forgettable hour, she called my name. I woke in a stupor. "I can't get off the bed" she said, I left my bed, helped her up to her trolley then I think I waited at the bathroom door to help her return, I don't remember returning to bed myself. This is becoming dangerous.
So that day was a long and tiring one for us, commencing by picking up a PD friend at 10am to take to our local PD group meeting. That friend lost her live-in carer so has no transport - she has a car but is unable to drive. Our meeting was addressed by two nurses from our local district nursing team, although are not PD knowledgeable. An informative meeting, probably providing the district nurses with some future work, assuming the State government does not apply funding cut-backs.
After returning the friend home we headed toward Hot Air City, stopping on the edge of town at a MacDonald's, since it was lunch time and because it was raining I did not want her to walk through the rain, so we ate in the vehicle, something we must not do since we both dribbled hamburger juice down our clothes. I had forgotten to collect paper napkins so we had to rely on a box of tissues.
She used her walker for the long slog between the high rise car park and the bowels of the hospital. Fortunately it was not raining. On this visit I checked with the secretary that our appointment was valid, it was, unlike last time when we learned that the PD nurse had been ill. We sat out in a general waiting area until appointment time, having arrived an hour early. Then we waited in the small reception area for almost an hour. By this stage I was beginning to feel grumpy.
I immediately had the impression that the PD nurse was officious and blunt, as she herded her toward the office, watching (to be expected) her shuffle along behind her walker, then upbraided her, in a Matronly fashion, for not backing up against the chair she was directed to sit in, before flopping into that chair. I thought "This nurse thinks she is a recently diagnosed PD patient, without experience." As the interview progressed I changed my opinion. I shall call the PD nurse "Jane" for very obscure reasons.
Jane began asking for medical history. As always, we have trouble remembering the details & dates; I should have brought a typed list of all her history, for verbally, from memory, details are given disjointedly, out of sequence, actual medical terms are forgotten and the whole is prone to error. For this appointment we went armed with her current meds regime and a diary of ON-OFF times for 3 days at the beginning of the week. Jane possibly thought me a pedantic twit. Jane seemed surprised that she spent almost half each day "OFF" and her effective levodopa intake was about 50% more than was considered the upper limit in the UK (Jane is a Pom). Jane continued to ask questions about activities, falls, bodily functions etc etc all the while entering information into a database which returned scores for various aspects of her PD. To my understanding she scored well considering she was diagnosed 21 years ago, although I can't remember exactly what the scores related to, although Jane seemed intrigued by the results from someone with "early onset" after so many years. YES!!! I didn't realise it on the day, but we saw Jane on 13th September, the date in September 1991 when she was given the awful news.
Jane was of the opinion that she may benefit greatly from using an apomorphine pump, something we have a natural fear of, inserting a needle into the body. Even DBS was suggested. She is very uncomfortable about both approaches, especially the latter. We left Jane having made an appointment for 6 months time unless she decides to proceed with an apomorphine trial, in which case she has to contact her neurologist for a referral to consult with another doctor associated with Jane to carry out the trial, so if she does decide to proceed, then she will be hospitalised for some days in about 3 months time. So the ball is fearfully in her court. She remembers the apomorphine trial she experienced over West when an initial 1mg test dose sent her to "sleep" for about 4 hours, causing the test to be discontinued. Anyway, I was very pleased with our meeting with Jane for she was the first person I had spoken to in 21 years (I didn't have contact with the PD nurse in the West) who had a full understanding of the feelings, behaviour, problems, and medication issues of a Parky patient, and that includes neurologists, general practitioners and even PD patients. And I thought my idea of a "fireman's pole" in front of the toilet was unknown to anyone, yet Jane was aware of such an idea, there is nothing new ....
Back home I spent an evening locating information about apomorphine, its side effects, pump usage, costs etc., printed out a bundle & left the lot for her to read. She has decided she will not proceed with a trial. She says she had made notes or marked the print outs with her reasons. We are yet to have another talk about all this. Before that I must search for written personal experiences using an apomorphine pump and failing that, or in addition to, asking Jane to arrange a meeting between us and a user of the device. The reader may be unaware that the pump is a battery powered pump (clipped to a belt or kept in a pocket) attached to a cylinder of fluid with a fine hose attached feeding a needle inserted in the skin of the stomach, or upper thighs, or shoulders. The position of the needle is changed each day to avoid complications. She would probably require normal meds during the night although some patients keep the pump attached 24 hours each day.
Her inability to rise from a seated position, to walk easily, feet freezing, continues. A couple of days ago she called me (perhaps on the CB, I don't remember) and I found her cowering in the corner between the vanity cupboard and the wall, too afraid to cross the short distance to the fireman's pole in front of the toilet. When going "OFF", her tremors begin, triggering her bladder, her feet freeze usually too close together, she fears falling, "talks" to her feet for them to move, and when very frighted she breathes in bursts through her nose, making short mewling noises in her throat. Last night at some forgettable hour, she called my name. I woke in a stupor. "I can't get off the bed" she said, I left my bed, helped her up to her trolley then I think I waited at the bathroom door to help her return, I don't remember returning to bed myself. This is becoming dangerous.
posted by Kilpike | 11:41 am
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