Chapter 426 - Only Way Ahead is Down
Now isn't that a tell-tale title? And I've been postponing writing here because it's just too hard, too depressing. As someone said on the phone on Friday, whenever we of a similar age talk these days we only speak about our current medications, our upcoming appointments, our current defects.
She was in the local hospital Rehab unit from Monday 4th July to Friday 22 July for physio work and training in transfers. They wanted her to stay over the weekend to be discharged on the Monday after a round table meeting to discuss her progress but we did not agree, as the extra two days would be of little benefit to her, she was bored with hospital routine and another two days of being home alone was negligible respite for me. I visited at least once, often twice, each day for clothes to be washed, take a few chocolates, tomato sauce on one occasion (to help her swallowing, she wished to avoid being served pulpy meals), reading material, her game tablet (although I think she only used it once) and knitting items.
At least once, perhaps several times, the staff failed to initiate the Duodopa Morning Dose and I suspect the reduction in daily intake tended to reduce her dyskinesias in the afternoon. Once back home we have run the pump as intended and by week's end and the dyskinesias are beginning earlier. I am now experimenting, leaving the pump off from about 0800 when she showers till about 1000.
Fortunately, J from West Beer PD Clinic emailed very detailed instructions for starting the pump, shutting it down during showers and evening shutdowns for the Rehab staff, who may have considered this a training exercise with official instructions rather than brief instructions from a layman.
We had hoped she would be trained (cope) to transfer to and from the loo or bed when she was dyskinetic. However the staff always took her to the gym of a morning but only of an afternoon if her shakes were minimal and when they worsened the exercising period was abbreviated.
I have noticed that since Rehab she pushes rather then pulls with her arms during transfers, although her arms and shoulders remain painful.
Before she entered Rehab she had been knitting lined carry bags. The first couple turned out well and were sold at Wild Dog. But after that she became dissatisfied with her work, taking hours to unpick it, chopping and joining pieces of wool, making a great mess. The materials were taken to Rehab without making any progress with another bag. Since returning to Wild Dog respite she has been decorating coat hanger covers knitted for small children's coat hangers. We roamed the shops last week for wooden coat hangers which I intended to cut to side; unable to find such out-of-date items, I had her buy brightly coloured child-sized plastic ones on which I cut the horizontal bar, she threads the knitted cover onto it before I glue it back together with a hot glue gun. I fear the range of hand crafts she can accomplish is diminishing. She has great trouble threading needles due to poor eye sight. On Thursday week she has a checkup with her eye specialist.
The toothpaste I buy for her is too "hot" and drys her mouth even though several types have been tried. At least 15 years ago her first Hot Air City neurologist had her use a type of eye drop for dry mouth problems; that concerned our chemist at that time. In the years since, speech therapists, dietitians, GP's and PD nurses and neurologists have offered advice about her problem yet none have ever mentioned tooth paste. Last week one of the Wild Dog carers assisting her to bed, which includes teeth cleaning, on hearing our comments about her tooth paste difficulties said "Have you tried Biotene?" On the side of the tooth paste tube are the words "gentle care for dry mouth". I bought a tube, not cheaply priced, and she finds the product effective.
The Duodopa pump remains set at 5.1 mL/hr; I am following instructions maintaining that rate until advised otherwise, but I haven't had any check up phone calls supposed to occur weekly/fortnightly yet since the last clinic. And shutting the pump off for a period each morning is only following instructions (from months ago) to shut off the pump when dyskinesias begin but that seems ineffective once she goes beyond the trigger point of her legs becoming tight and heavy, so I'm only being proactive by not starting the pump for an hour or so after her morning shower.
Since attending clinics at West Beer is a stressful, costly (to the tax payer) and time consuming exercise, I queried the PD Clinic at Hot Air City only to learn they don't support Duodopa treatment, although they are happy for her to attend their clinics for conventional treatments.
Also at the last West Beer Clinic it was suggested that the script for Duopa be reduced by half since only one cassette is used each day because at 5.1 ml/hr plus the morning dose just, but only just, lasts the 16 hours from 0600 and 2200 and 16 hours is the daily usage spec for each cassette. I will have our GP write a new script for next month.
She was in the local hospital Rehab unit from Monday 4th July to Friday 22 July for physio work and training in transfers. They wanted her to stay over the weekend to be discharged on the Monday after a round table meeting to discuss her progress but we did not agree, as the extra two days would be of little benefit to her, she was bored with hospital routine and another two days of being home alone was negligible respite for me. I visited at least once, often twice, each day for clothes to be washed, take a few chocolates, tomato sauce on one occasion (to help her swallowing, she wished to avoid being served pulpy meals), reading material, her game tablet (although I think she only used it once) and knitting items.
At least once, perhaps several times, the staff failed to initiate the Duodopa Morning Dose and I suspect the reduction in daily intake tended to reduce her dyskinesias in the afternoon. Once back home we have run the pump as intended and by week's end and the dyskinesias are beginning earlier. I am now experimenting, leaving the pump off from about 0800 when she showers till about 1000.
Fortunately, J from West Beer PD Clinic emailed very detailed instructions for starting the pump, shutting it down during showers and evening shutdowns for the Rehab staff, who may have considered this a training exercise with official instructions rather than brief instructions from a layman.
We had hoped she would be trained (cope) to transfer to and from the loo or bed when she was dyskinetic. However the staff always took her to the gym of a morning but only of an afternoon if her shakes were minimal and when they worsened the exercising period was abbreviated.
I have noticed that since Rehab she pushes rather then pulls with her arms during transfers, although her arms and shoulders remain painful.
Before she entered Rehab she had been knitting lined carry bags. The first couple turned out well and were sold at Wild Dog. But after that she became dissatisfied with her work, taking hours to unpick it, chopping and joining pieces of wool, making a great mess. The materials were taken to Rehab without making any progress with another bag. Since returning to Wild Dog respite she has been decorating coat hanger covers knitted for small children's coat hangers. We roamed the shops last week for wooden coat hangers which I intended to cut to side; unable to find such out-of-date items, I had her buy brightly coloured child-sized plastic ones on which I cut the horizontal bar, she threads the knitted cover onto it before I glue it back together with a hot glue gun. I fear the range of hand crafts she can accomplish is diminishing. She has great trouble threading needles due to poor eye sight. On Thursday week she has a checkup with her eye specialist.
The toothpaste I buy for her is too "hot" and drys her mouth even though several types have been tried. At least 15 years ago her first Hot Air City neurologist had her use a type of eye drop for dry mouth problems; that concerned our chemist at that time. In the years since, speech therapists, dietitians, GP's and PD nurses and neurologists have offered advice about her problem yet none have ever mentioned tooth paste. Last week one of the Wild Dog carers assisting her to bed, which includes teeth cleaning, on hearing our comments about her tooth paste difficulties said "Have you tried Biotene?" On the side of the tooth paste tube are the words "gentle care for dry mouth". I bought a tube, not cheaply priced, and she finds the product effective.
The Duodopa pump remains set at 5.1 mL/hr; I am following instructions maintaining that rate until advised otherwise, but I haven't had any check up phone calls supposed to occur weekly/fortnightly yet since the last clinic. And shutting the pump off for a period each morning is only following instructions (from months ago) to shut off the pump when dyskinesias begin but that seems ineffective once she goes beyond the trigger point of her legs becoming tight and heavy, so I'm only being proactive by not starting the pump for an hour or so after her morning shower.
Since attending clinics at West Beer is a stressful, costly (to the tax payer) and time consuming exercise, I queried the PD Clinic at Hot Air City only to learn they don't support Duodopa treatment, although they are happy for her to attend their clinics for conventional treatments.
Also at the last West Beer Clinic it was suggested that the script for Duopa be reduced by half since only one cassette is used each day because at 5.1 ml/hr plus the morning dose just, but only just, lasts the 16 hours from 0600 and 2200 and 16 hours is the daily usage spec for each cassette. I will have our GP write a new script for next month.