Chapter 322 - Too Stuffed to Type
One has to be motivated to post entries; when matters are poorly, the weather is hot, things are going wrong, I'm tempted to ask who gives a damn. So I'll ask: Who Gives a Damn?
Must have been the week before last she attended a "taster" session at a physio organsisation that provides the LSVT BIG programme; an exercise regime of extreme movements designed for Parkies. Should you wish to know more then search on line and view clips on YouTube. Intense. Expensive. Concentrated in time - four one hour sessions per week for four consecutive weeks. All at two locations in Hot Air City, the closest about 90kms away so we will be commuting again about the same distance as we did when working in Batman City so many years ago. Maybe we will lash out and stay in a motel on the odd night if I am too buggered to drive home. I am concerned she may be unable to cope physically with the exercise. She tried some of the movements to the accompaniment of a YouTube clip I connected to the TV. Part of the routine seems to be movements by numbers, interspersed with yelling out "BIG"; I have tried this while helping her shuffle to and from the loo; yelling out "step BIG!" and will you believe her step lengthens and her feet are lifted higher? No bull; it happens!
We bought her a "Revolutionary" chair (I think that is the trade name for it) which is very sturdy (and heavy) with a rotatable seat with arm rests. The seat can be slid some 100+ mm in a forwards direction. When rotated +/- 90 degrees the seat latches into position, the position for sitting upon or rising from the seat. Once seated, the seat is rotated to face a table or desk then slid forwards and latched. The seat was positioned at the kitchen table where she does a lot of sewing lately. My intention was to carry the chair into her sewing room whenever she wished to be seated at her desk and her laptop. Wishing to avoid injury to my aged self, I bought another chair of the same type.
The wheeled commode/shower chair we have on loan for her from the hospital is too high to readily position her on it; she found it awkward and my forearms suffered attempting to lift her. So the OT came to inspect the situation; perhaps we will eventually receive a new one from the government. In the mean time, we are advised to continue to use our own cheap non-mobile commode and non-mobile shower chair. The OT then checked to see how I managed transferring her bed to commode (which also applies to the bidet on the loo, although that is easier because of the fireman's pole) and the OT was unimpressed. Advised a belt, not impressed with the small one we have (and don't use). I have now ordered a more appropriate belt. The OT referred us for some physio directed transfer training at the hospital. Also a visit from District Nursing about respite care and the like; a visit resulted and we will be visited by ACAT for her to be assessed for High Level Care. Anyway, the appointment for some respite training took place last Friday; we introduced the very young physio to the vagaries of PD and were given useful tips in return; we were shown a transfer belt and I have now ordered one. Another appointment was made. As I held the exit door open for my beloved Parky her left leg gave way as it has been threatening to do frequently after the last few months. She fell, tumbling and rolling forward as I let the door go (bad move on my part), ending up in a ball on the concrete. A gauze door also became entangled with us. Within seconds we must have had a dozen physios and support staff in attendance. She had no scratches, broken parts or bruising; she would make a fantastic drunk or clown. The professional helped her up, made recommendations about the height of the handles on her walker, retrieved some Allen keys and made adjustments, then aided her to the car which I brought as close as possible. Later that day she was called to find out how she was, and the OT wants to place her into the palliative care hospital for a few days; for what reasons she was not told and/or did not ask; she will be called about this after Xmas.
Last Thursday another appointment to see Polly the PD nurse in Hot Air City. I seem to have caused her some concern. After our last visit we had agreed to reduce the Sifrol intake by 0.5mg from 1.5mg three times a day back to the 1.0mg three times day she had been on at the beginning of the year. We had already disposed of the Comtan earlier. Since there were no marked changes in her symptoms/side effects/complications after some days I decided less is better, so had her drop the Sifrol back to only 0.5mg three times each day. Polly the PD nurse then explained DAWS, otherwise known as Dopamine Agonist Withdrawal Syndrome. Back home I consulted Dr Google to learn that some Parkies, on attempting to reduce the quantity of Sifrol in their witch's brew of medications, suddenly suffer awful complications which persist until Sifrol is returned to its prior quantities. In other words, the Parky patient suffers withdrawal symptoms after having become addicted to the effects of Sifrol; in other words, similar to a drug addict attempting to give up their addiction. Since the media frequently highlights the dangers of Dopamine Agonists (read Sifrol and the like) for patients that suffer impulsive and compulsive disorders with gambling, spending and sexual behaviour I am puzzled why there has been no media coverage about the consequences of attempting to remove the offending medication. I believe many "practitioners" are unaware of DAWS. The learned papers I found on line were written in 2010. My Parky was introduced to Sifrol by her local GP in 2008. Also, the Apomine she is now using is a Dopamine Agonist. Catch 22. In the meantime, I will refrain from encouraging any more step changes in reducing her medications, what the professionals call "tapering".
We thought we were embarking on a lonely Xmas season. A couple in our village came to the rescue and organised a chicken lunch at $15 each. Just after I paid our contribution, neighbours around the corner invited us for Xmas dinner, which we had to sadly decline, but are invited to their place on Boxing Day to help dispose of the left-overs. She told her 90 year old aunt that we were unable to attend a BBQ this past Friday with the Ugly Sisters and others; then also our son and family who we would have visited on the way through. Then yesterday a call from our son to suggest they come down today and perhaps we eat at the Club. Which we did; we arrived early, commandeered several table and chairs then enjoyed lunch and a bit of frivolity. I wheeled her from the car park into the restaurant in her walker/wheelchair in which she remained the whole of four hours so by 3pm she was very uncomfortable so we called it quits; we to home and the family several hours back to their place. Sometimes these spontaneous gatherings are much better than the planned.
Even so, 2013 has been a lousy year.
Must have been the week before last she attended a "taster" session at a physio organsisation that provides the LSVT BIG programme; an exercise regime of extreme movements designed for Parkies. Should you wish to know more then search on line and view clips on YouTube. Intense. Expensive. Concentrated in time - four one hour sessions per week for four consecutive weeks. All at two locations in Hot Air City, the closest about 90kms away so we will be commuting again about the same distance as we did when working in Batman City so many years ago. Maybe we will lash out and stay in a motel on the odd night if I am too buggered to drive home. I am concerned she may be unable to cope physically with the exercise. She tried some of the movements to the accompaniment of a YouTube clip I connected to the TV. Part of the routine seems to be movements by numbers, interspersed with yelling out "BIG"; I have tried this while helping her shuffle to and from the loo; yelling out "step BIG!" and will you believe her step lengthens and her feet are lifted higher? No bull; it happens!
We bought her a "Revolutionary" chair (I think that is the trade name for it) which is very sturdy (and heavy) with a rotatable seat with arm rests. The seat can be slid some 100+ mm in a forwards direction. When rotated +/- 90 degrees the seat latches into position, the position for sitting upon or rising from the seat. Once seated, the seat is rotated to face a table or desk then slid forwards and latched. The seat was positioned at the kitchen table where she does a lot of sewing lately. My intention was to carry the chair into her sewing room whenever she wished to be seated at her desk and her laptop. Wishing to avoid injury to my aged self, I bought another chair of the same type.
The wheeled commode/shower chair we have on loan for her from the hospital is too high to readily position her on it; she found it awkward and my forearms suffered attempting to lift her. So the OT came to inspect the situation; perhaps we will eventually receive a new one from the government. In the mean time, we are advised to continue to use our own cheap non-mobile commode and non-mobile shower chair. The OT then checked to see how I managed transferring her bed to commode (which also applies to the bidet on the loo, although that is easier because of the fireman's pole) and the OT was unimpressed. Advised a belt, not impressed with the small one we have (and don't use). I have now ordered a more appropriate belt. The OT referred us for some physio directed transfer training at the hospital. Also a visit from District Nursing about respite care and the like; a visit resulted and we will be visited by ACAT for her to be assessed for High Level Care. Anyway, the appointment for some respite training took place last Friday; we introduced the very young physio to the vagaries of PD and were given useful tips in return; we were shown a transfer belt and I have now ordered one. Another appointment was made. As I held the exit door open for my beloved Parky her left leg gave way as it has been threatening to do frequently after the last few months. She fell, tumbling and rolling forward as I let the door go (bad move on my part), ending up in a ball on the concrete. A gauze door also became entangled with us. Within seconds we must have had a dozen physios and support staff in attendance. She had no scratches, broken parts or bruising; she would make a fantastic drunk or clown. The professional helped her up, made recommendations about the height of the handles on her walker, retrieved some Allen keys and made adjustments, then aided her to the car which I brought as close as possible. Later that day she was called to find out how she was, and the OT wants to place her into the palliative care hospital for a few days; for what reasons she was not told and/or did not ask; she will be called about this after Xmas.
Last Thursday another appointment to see Polly the PD nurse in Hot Air City. I seem to have caused her some concern. After our last visit we had agreed to reduce the Sifrol intake by 0.5mg from 1.5mg three times a day back to the 1.0mg three times day she had been on at the beginning of the year. We had already disposed of the Comtan earlier. Since there were no marked changes in her symptoms/side effects/complications after some days I decided less is better, so had her drop the Sifrol back to only 0.5mg three times each day. Polly the PD nurse then explained DAWS, otherwise known as Dopamine Agonist Withdrawal Syndrome. Back home I consulted Dr Google to learn that some Parkies, on attempting to reduce the quantity of Sifrol in their witch's brew of medications, suddenly suffer awful complications which persist until Sifrol is returned to its prior quantities. In other words, the Parky patient suffers withdrawal symptoms after having become addicted to the effects of Sifrol; in other words, similar to a drug addict attempting to give up their addiction. Since the media frequently highlights the dangers of Dopamine Agonists (read Sifrol and the like) for patients that suffer impulsive and compulsive disorders with gambling, spending and sexual behaviour I am puzzled why there has been no media coverage about the consequences of attempting to remove the offending medication. I believe many "practitioners" are unaware of DAWS. The learned papers I found on line were written in 2010. My Parky was introduced to Sifrol by her local GP in 2008. Also, the Apomine she is now using is a Dopamine Agonist. Catch 22. In the meantime, I will refrain from encouraging any more step changes in reducing her medications, what the professionals call "tapering".
We thought we were embarking on a lonely Xmas season. A couple in our village came to the rescue and organised a chicken lunch at $15 each. Just after I paid our contribution, neighbours around the corner invited us for Xmas dinner, which we had to sadly decline, but are invited to their place on Boxing Day to help dispose of the left-overs. She told her 90 year old aunt that we were unable to attend a BBQ this past Friday with the Ugly Sisters and others; then also our son and family who we would have visited on the way through. Then yesterday a call from our son to suggest they come down today and perhaps we eat at the Club. Which we did; we arrived early, commandeered several table and chairs then enjoyed lunch and a bit of frivolity. I wheeled her from the car park into the restaurant in her walker/wheelchair in which she remained the whole of four hours so by 3pm she was very uncomfortable so we called it quits; we to home and the family several hours back to their place. Sometimes these spontaneous gatherings are much better than the planned.
Even so, 2013 has been a lousy year.
posted by Kilpike | 8:42 pm
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