Chapter 305 - A Clayton's Holiday in Hot Air City
She skipped respite at the Sheltered Workshop so we left home Tuesday lunchtime to have a relaxed trip drive to Hot Air where we checked in to the usual motel we stay at. I had printed a Google map to prove to her that this particular motel was only a few km's from both hospitals we were to visit. I think I mentioned last post that she had been dead set about staying in the accommodation at one of the hospitals so that she could have been close to her appointment place on Thursday. By all reports staying at the hospital was sure to be a disaster. Anyway, the motel has changed hands again, the disabled rooms have been re-modelled and the restaurant is not satisfactory. And we skipped the complementary breakfasts each morning because she was not up to walking there to appear in public. I suppose breakfast delivered to the room was an expensive option but we are happy with dried fruit and a cuppa.
My visit on Wednesday to the Eye Hospital was very successful so my left eye is now marginally better than the right. Being a pleasant sunny day, she opted to remain in the vehicle during the time I was in the Eye Hospital, from about 10:30am to almost 2pm during which time she did not need the loo; neither during the time we detoured via a shopping centre, until we returned to the motel about 3.30pm.
We had to share a queen/king size bed at the motel, covered in an enormous doona weighing literally tons. Each night I was woken probably twice (I'm a bit hazy) about 2am and 4am; each time because of her violent tremors lasting perhaps a minute, beginning gently, reaching a crescendo, fading away then suddenly ceasing. What parts of her trembled I'm unsure, I don't think she kicked or swung her arms.
Early to the appointment to see the Considerate Neuro, she argued that the sign said not to enter the waiting room until 15 minutes before our appointed time. Be damned to that, of perhaps 3-4 dozen seats available we swelled the number of waiters to maybe 7 or 8. Quite soon Polly the PD Nurse came for us, rather than the Considerate Neuro who she was to see first, and ran her through the usual familiar Parky tests then into the neuro. He put her on the spot asking whether she preferred DBS or Apomorphine as the next stage in her treatment. After some hesitation she opted for the latter, although allowed her 'druthers, she prefers neither. In the interim he suggested she delay each medication dosage by 15 minutes, so she takes medications at 6am, 10.15am, 2.30pm, 6.45pm and 11pm. She began this new schedule yesterday, Saturday, and this morning she told me she had slept straight through. An encouraging sign!
After the hospital we had some fast food lunch before wandering a Big Store, where she bought some pyjamas with a slippery texture in preparation for a hospital stay I imagine. A good sign I thought.
After a room service meal back at the motel I checked my emails and found a message from Polly giving the contact details for a PWP recently introduced to Apomorphine. I rang and they were agreeable for us to visit them at home the following morning. With the aid of the GPS we had no difficulty finding their place on the other side of town, although the route taken used most of the complicated intersections and roundabouts around the CBD, not much to her liking. we found the PWP and his wife a most friendly helpful couple. I had prepared a long list of questions, answers to which came out in our conversation to and fro as we shared our experiences back and forth. Checking my list now I see that some details need to be clarified. Although the PWP's medications are not yet finalised, and he shows evident signs of PD, my better half was quite surprised that he was able to stand for long periods (from her point of view), able to move around easily, sit and stand easily, especially since as far as we understood, he was quite frozen before. Yet he is unable to attach the needle to himself; his lady has to do that, he has difficulties with fine motor activity in his fingers. Not a problem for us I thought since she is still able to cope with fine sewing, stitching and cutting for her various embroidery, sewing and craft activities. My qualms about the diffusion pump and the needles were largely dispelled, especially when the PWP said there was no pain involved, although he may have been referring to a more expensive type of needle rather than basic "insert at 45 degrees" type. But cost is not uppermost in our minds. We left them not clear in our minds how much "conventional" medication he is still taking.
We lay in bed this morning discussing the issues. She fears the intrusiveness of injections and wonders about the efficacy of patches.
I hope she can make a decision ASAP. I tell her she must contact Polly soon. She says she won't be going to our grand daughter's wedding in November in her present condition.
And we left her bed pole behind at the motel.
My visit on Wednesday to the Eye Hospital was very successful so my left eye is now marginally better than the right. Being a pleasant sunny day, she opted to remain in the vehicle during the time I was in the Eye Hospital, from about 10:30am to almost 2pm during which time she did not need the loo; neither during the time we detoured via a shopping centre, until we returned to the motel about 3.30pm.
We had to share a queen/king size bed at the motel, covered in an enormous doona weighing literally tons. Each night I was woken probably twice (I'm a bit hazy) about 2am and 4am; each time because of her violent tremors lasting perhaps a minute, beginning gently, reaching a crescendo, fading away then suddenly ceasing. What parts of her trembled I'm unsure, I don't think she kicked or swung her arms.
Early to the appointment to see the Considerate Neuro, she argued that the sign said not to enter the waiting room until 15 minutes before our appointed time. Be damned to that, of perhaps 3-4 dozen seats available we swelled the number of waiters to maybe 7 or 8. Quite soon Polly the PD Nurse came for us, rather than the Considerate Neuro who she was to see first, and ran her through the usual familiar Parky tests then into the neuro. He put her on the spot asking whether she preferred DBS or Apomorphine as the next stage in her treatment. After some hesitation she opted for the latter, although allowed her 'druthers, she prefers neither. In the interim he suggested she delay each medication dosage by 15 minutes, so she takes medications at 6am, 10.15am, 2.30pm, 6.45pm and 11pm. She began this new schedule yesterday, Saturday, and this morning she told me she had slept straight through. An encouraging sign!
After a room service meal back at the motel I checked my emails and found a message from Polly giving the contact details for a PWP recently introduced to Apomorphine. I rang and they were agreeable for us to visit them at home the following morning. With the aid of the GPS we had no difficulty finding their place on the other side of town, although the route taken used most of the complicated intersections and roundabouts around the CBD, not much to her liking. we found the PWP and his wife a most friendly helpful couple. I had prepared a long list of questions, answers to which came out in our conversation to and fro as we shared our experiences back and forth. Checking my list now I see that some details need to be clarified. Although the PWP's medications are not yet finalised, and he shows evident signs of PD, my better half was quite surprised that he was able to stand for long periods (from her point of view), able to move around easily, sit and stand easily, especially since as far as we understood, he was quite frozen before. Yet he is unable to attach the needle to himself; his lady has to do that, he has difficulties with fine motor activity in his fingers. Not a problem for us I thought since she is still able to cope with fine sewing, stitching and cutting for her various embroidery, sewing and craft activities. My qualms about the diffusion pump and the needles were largely dispelled, especially when the PWP said there was no pain involved, although he may have been referring to a more expensive type of needle rather than basic "insert at 45 degrees" type. But cost is not uppermost in our minds. We left them not clear in our minds how much "conventional" medication he is still taking.
We lay in bed this morning discussing the issues. She fears the intrusiveness of injections and wonders about the efficacy of patches.
I hope she can make a decision ASAP. I tell her she must contact Polly soon. She says she won't be going to our grand daughter's wedding in November in her present condition.
And we left her bed pole behind at the motel.
posted by Kilpike | 11:29 am
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