Chapter 430 - What Benefit?
Tomorrow we drive to West Beer, firstly to see neurologist Dr F. on Tuesday then a PD clinic on Wednesday morning. We will stay overnight on Monday and Tuesday at the hospital accommodation block rather than make two day-trips since doing so is very expensive to have support organisations assist and these days I won't risk a return drive late in the afternoon after a stressful day in crowded waiting rooms and hospitals. Unfortunately, staying over night means we must travel with two sets of kylie and short satin sheets in case of "accidents". I'm unsure how my hips will cope helping her in and out of bed, on and off toilets and showering without the aid of our mechanical device Sara Stedy.
The following list will be handed to Dr F. as well as the clinic people:
1. After last Clinic (29th June) the Duodopa pump flow rate was set to 5.1 mL/hr and has not been changed since. Only one cassette is used each day between 0600 and 2200 with an interruption of maybe 20 minutes during showering. The cassette is empty by 2200, sometimes causing the pump to "beep" continuously without displaying an error message.
2. One Sinemet CR 200/50 is taken at 2200.
3. Flu injection 20th April.
4. Physio at the local hospital fitted a removable cast to her left foot 20th April. She is only able to tolerate the cast from about 0830 to 1600; unable to wear it overnight. She last saw the physio on 4th August because there had been no further improvement in her left foot over a period of several weeks.
5. Between 4th and 22nd July she was in the local hospital Rehab Unit for physio, transfer practice and observation. Staff tended not to have her exercise whenever dyskinesias occurred, often by late morning.
6. During a scheduled eye consultation on 10th August Dr Con changed her glaucoma medication to one drop in each eye of Ganfort Pf 0.3/5 because her eye pressures had risen to 22 and 27.
7. She is unable to swallow capsules (Vitamins D & E, Omega 3) or tablets (calcium, magnesium). So all are mixed (the tablets crushed) with Movicol in fruit juice.
8. She had lost appetite and her weight had decreased to 51.2 kg on 18 May. Dr I. prescribed Panafcortelon for 7 days then when her appetite returned he prescribed Periactin from 2nd June. Her weight was 55.4kg on 22nd June. Her weight was measured while in Rehab but I failed to record it. There are few opportunities to weigh her seated in a wheel chair.
9. Since 26th July she uses Biotene toothpaste because of dry mouth problems.
10. Two or three times a month she wakes in the middle of the night with very strong dyskinesias, stressed and sweating. I give her a Sinemet 250/25 to stabilise her.
11. In recent weeks when put to bed her left knee bends unintentionally, needing reasonable effort to force it straight again but doing so is not painful.
12. I believe she suffers sleep apnoea (I myself use a CPAP machine so know the symptoms) because I am frequently woken by her gurgling and snorting and holding her breath although she never snores.
13. Each night she needs to be cooled by a fan for up to an hour; even if the bedroom is very cold..
14. Her dreaming is often vivid for she frequently yells or laughs loudly without waking herself.
15. Her urinary incontinence is worsening; once she only used an additional pad inside her incontinence bloomers when we were leaving the house, now she wants to have an extra pad each day whether we are in or out. That way, once the pad is damp it can be easily removed and she is "dry" again.
16. She has difficulty knowing whether or not she has had a bowel motion.when sitting on the toilet. A sense of urgency may exist whether she has had a motion or not; sometimes she wants to remain on the toilet for up to an hour. Although there have been no "accidents" while out, an occasional small dropping may occur when getting off the toilet.
17. Sometimes she is able to transfer herself from wheel chair to toilet; most often I use the Sara Stedy to assist her.
18. She refuses to interrupt a current activity (hand craft, looking for an item, sorting cupboards etc) for meals, getting into the car and such like. On the other hand, she often discontinues a task of her own doing to begin something else.
19. After all this time, she is unable to easily move or steer her wheel chair without grabbing hold of furniture and doorways.
20. Both of her feet are usually cold to the touch and show a bluish colour irrespective of ambient temperature and whether she wears socks.
This little list has taken me all morning to write; I do hope someone takes note of some of it. I usually take brief notes with me, this time a little more detailed. Invariably in limited time situations in doctor's rooms or bustling clinics comments and questions are not conveyed to our satisfaction and we leave, feeling frustrated, saying to ourselves "What benefit was gained by coming?"
The following list will be handed to Dr F. as well as the clinic people:
1. After last Clinic (29th June) the Duodopa pump flow rate was set to 5.1 mL/hr and has not been changed since. Only one cassette is used each day between 0600 and 2200 with an interruption of maybe 20 minutes during showering. The cassette is empty by 2200, sometimes causing the pump to "beep" continuously without displaying an error message.
2. One Sinemet CR 200/50 is taken at 2200.
3. Flu injection 20th April.
4. Physio at the local hospital fitted a removable cast to her left foot 20th April. She is only able to tolerate the cast from about 0830 to 1600; unable to wear it overnight. She last saw the physio on 4th August because there had been no further improvement in her left foot over a period of several weeks.
5. Between 4th and 22nd July she was in the local hospital Rehab Unit for physio, transfer practice and observation. Staff tended not to have her exercise whenever dyskinesias occurred, often by late morning.
6. During a scheduled eye consultation on 10th August Dr Con changed her glaucoma medication to one drop in each eye of Ganfort Pf 0.3/5 because her eye pressures had risen to 22 and 27.
7. She is unable to swallow capsules (Vitamins D & E, Omega 3) or tablets (calcium, magnesium). So all are mixed (the tablets crushed) with Movicol in fruit juice.
8. She had lost appetite and her weight had decreased to 51.2 kg on 18 May. Dr I. prescribed Panafcortelon for 7 days then when her appetite returned he prescribed Periactin from 2nd June. Her weight was 55.4kg on 22nd June. Her weight was measured while in Rehab but I failed to record it. There are few opportunities to weigh her seated in a wheel chair.
9. Since 26th July she uses Biotene toothpaste because of dry mouth problems.
10. Two or three times a month she wakes in the middle of the night with very strong dyskinesias, stressed and sweating. I give her a Sinemet 250/25 to stabilise her.
11. In recent weeks when put to bed her left knee bends unintentionally, needing reasonable effort to force it straight again but doing so is not painful.
12. I believe she suffers sleep apnoea (I myself use a CPAP machine so know the symptoms) because I am frequently woken by her gurgling and snorting and holding her breath although she never snores.
13. Each night she needs to be cooled by a fan for up to an hour; even if the bedroom is very cold..
14. Her dreaming is often vivid for she frequently yells or laughs loudly without waking herself.
15. Her urinary incontinence is worsening; once she only used an additional pad inside her incontinence bloomers when we were leaving the house, now she wants to have an extra pad each day whether we are in or out. That way, once the pad is damp it can be easily removed and she is "dry" again.
16. She has difficulty knowing whether or not she has had a bowel motion.when sitting on the toilet. A sense of urgency may exist whether she has had a motion or not; sometimes she wants to remain on the toilet for up to an hour. Although there have been no "accidents" while out, an occasional small dropping may occur when getting off the toilet.
17. Sometimes she is able to transfer herself from wheel chair to toilet; most often I use the Sara Stedy to assist her.
18. She refuses to interrupt a current activity (hand craft, looking for an item, sorting cupboards etc) for meals, getting into the car and such like. On the other hand, she often discontinues a task of her own doing to begin something else.
19. After all this time, she is unable to easily move or steer her wheel chair without grabbing hold of furniture and doorways.
20. Both of her feet are usually cold to the touch and show a bluish colour irrespective of ambient temperature and whether she wears socks.
This little list has taken me all morning to write; I do hope someone takes note of some of it. I usually take brief notes with me, this time a little more detailed. Invariably in limited time situations in doctor's rooms or bustling clinics comments and questions are not conveyed to our satisfaction and we leave, feeling frustrated, saying to ourselves "What benefit was gained by coming?"
posted by Kilpike | 11:43 am
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