Chapter 398 - Advancing Nowhere
During this past month I was unable to force myself to write here. A chore and often painful to regurgitate details of our daily living as it progresses nowhere.
She was admitted to hospital on October 11th and the next day she underwent surgery on her spine. The surgeon reported the procedure went well, although the congestion at the L5 area he worked upon was greater than expected but nothing went wrong (my understanding of what he said). After a couple of days she was moved down from UIC to the Surgery ward. Then on the 18th she was moved down to Rehabilitation. During that first week I stayed in the accommodation at the hospital, slowly going stir crazy, so I returned home and visit every second day. Once or twice each day physios exercise her with sit-stands, walking at parallel bars, walking with a fore-arm walker. She briefly mentions such activities, sounding somewhat positive, even saying that one day she and others were "walked" through a "bridge" between buildings to the staff coffee shop; she using the new fore-arm walker I had enthusiastically bought for her the day before (I had not known of such things and could see the benefit of the device). When I rang her this morning about "walking" so far, she said it was only a matter of using the walker some 20 metres to the lift after which she was seated in her wheel chair. I also brought her pedal machine from home so she was able to exercise her legs while in her room, not just in the rehab gym. She became despondent when her left leg/foot failed to immediately respond after the operation and rehab. I tell her this is a gradual process just as her deterioration was gradual.
Yesterday, Saturday 24th, I visited her after lunch. The Specialist Rehabilitation Physician came to see her. He assumed one of the physios had rung me the day before to speak to me about her non-progress and discharge. No one called me on either home phone or mobile, although the latter was turned off for an hour while I attended a funeral, and no messages were left. It seems the physios have decided she is not making progress so she may as well be discharged (my interpretation of what the doctor said). We discussed discharge options and tentatively decided upon Thursday 29th, the day I have my hydrocoele surgery (should you not know what that is then browse about it), so I need to organise the Wild Dog transport to deliver us both home at the same time. Damn inconvenient that each of us have overlapping surgery, although with hers the sooner was better whereas mine cannot be delayed much longer.
Yesterday her left foot was unable to remain flat on the floor when I helped her stand because I wished to see her use the new walker. However, when she used the pedals her left foot was straight, remaining on its pedal but her right foot turned until it came out of the velcro straps. She says she has regularly used the pedals. I have doubts that she really used the new walker to go to the coffee shop the other day.
She tells me she is not experiencing leg burnings, although both continue to tingle. I have observed few dyskinesias, although I have not been at the hospital late in the afternoon.
After two weeks of respite my right hip has stopped causing me to freeze with sharp pain. A lesson learned, I must not take her full weight and twist when transferring her between bed/commode/wheel chair/toilet/car and must use the boomerang slide where ever possible. I cannot see a lifter/hoist being a practical and speedy transfer aid for a lone carer. While buying the fore-arm walker the other day I was shown a wheeled "chair" that a patient stepped into while the seat pieces were swung out of the way, only $2000 or $35 per week rental.
An article in New Scientist yesterday gives one HOPE. Well worth reading about Nilotinib, a cancer drug which in a trial, seemingly of 6 months long, that supposedly "reversed" PD in end stage Parkies, in that some walked again and some talked again. PD symptoms returned on cessation of taking the drug. The article states the cost of the drug is $10000 per month (whose currency was unstated). On the the Australian PBS the Duodopa DPMQ price is $11,682.85 per month and Nilotinib (as brand name Tasigna) only $4,368.38 per month. I wonder what the side effects are?
She was admitted to hospital on October 11th and the next day she underwent surgery on her spine. The surgeon reported the procedure went well, although the congestion at the L5 area he worked upon was greater than expected but nothing went wrong (my understanding of what he said). After a couple of days she was moved down from UIC to the Surgery ward. Then on the 18th she was moved down to Rehabilitation. During that first week I stayed in the accommodation at the hospital, slowly going stir crazy, so I returned home and visit every second day. Once or twice each day physios exercise her with sit-stands, walking at parallel bars, walking with a fore-arm walker. She briefly mentions such activities, sounding somewhat positive, even saying that one day she and others were "walked" through a "bridge" between buildings to the staff coffee shop; she using the new fore-arm walker I had enthusiastically bought for her the day before (I had not known of such things and could see the benefit of the device). When I rang her this morning about "walking" so far, she said it was only a matter of using the walker some 20 metres to the lift after which she was seated in her wheel chair. I also brought her pedal machine from home so she was able to exercise her legs while in her room, not just in the rehab gym. She became despondent when her left leg/foot failed to immediately respond after the operation and rehab. I tell her this is a gradual process just as her deterioration was gradual.
Yesterday, Saturday 24th, I visited her after lunch. The Specialist Rehabilitation Physician came to see her. He assumed one of the physios had rung me the day before to speak to me about her non-progress and discharge. No one called me on either home phone or mobile, although the latter was turned off for an hour while I attended a funeral, and no messages were left. It seems the physios have decided she is not making progress so she may as well be discharged (my interpretation of what the doctor said). We discussed discharge options and tentatively decided upon Thursday 29th, the day I have my hydrocoele surgery (should you not know what that is then browse about it), so I need to organise the Wild Dog transport to deliver us both home at the same time. Damn inconvenient that each of us have overlapping surgery, although with hers the sooner was better whereas mine cannot be delayed much longer.
Yesterday her left foot was unable to remain flat on the floor when I helped her stand because I wished to see her use the new walker. However, when she used the pedals her left foot was straight, remaining on its pedal but her right foot turned until it came out of the velcro straps. She says she has regularly used the pedals. I have doubts that she really used the new walker to go to the coffee shop the other day.
She tells me she is not experiencing leg burnings, although both continue to tingle. I have observed few dyskinesias, although I have not been at the hospital late in the afternoon.
After two weeks of respite my right hip has stopped causing me to freeze with sharp pain. A lesson learned, I must not take her full weight and twist when transferring her between bed/commode/wheel chair/toilet/car and must use the boomerang slide where ever possible. I cannot see a lifter/hoist being a practical and speedy transfer aid for a lone carer. While buying the fore-arm walker the other day I was shown a wheeled "chair" that a patient stepped into while the seat pieces were swung out of the way, only $2000 or $35 per week rental.
An article in New Scientist yesterday gives one HOPE. Well worth reading about Nilotinib, a cancer drug which in a trial, seemingly of 6 months long, that supposedly "reversed" PD in end stage Parkies, in that some walked again and some talked again. PD symptoms returned on cessation of taking the drug. The article states the cost of the drug is $10000 per month (whose currency was unstated). On the the Australian PBS the Duodopa DPMQ price is $11,682.85 per month and Nilotinib (as brand name Tasigna) only $4,368.38 per month. I wonder what the side effects are?
posted by Kilpike | 8:05 am
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