Chapter 399 - In need of Coping Strategies
The Carer's organisation funded $600 for a driver from Wild Dog to drive me to the Private hospital (the same where she was) in Hot Air City for my hydrocoele day surgery procedure on October 29th, wait for my discharge and then return both of us home, for she was discharged on the same day. Well evening actually, at 6PM I was ready to go. I am so glad I had cancelled my plan to drive there myself, stay over night in hospital accommodation after my procedure and then drive us back the next day. I was unfit to drive for several days due either to pain (only a bloke can understand) or to motion stability due to pain killers. Even now, over a week since the operation, I am tired, weary, short tempered, needing to carefully sit, bend or lift items.
In my last post I was in error when I described how far she had walked with her new walker; rather the distance was probably less than 20 metres, after that she was in her wheel chair. The day after returning home the physio from Wild Dog had her use the new fore-arm walker. I recorded half the period she was on her feet; you may see the clip, until I remember to delete the share, at
https://drive.google.com/file/d/0B3e-dSmNja1dQnBSS3NCMTVtaWs/view?usp=sharing
The surgery for her L5 stenosis was well done technically, it healed properly, she experienced no more pain than expected following an operation of that sort. But so far no improvements in the mobility of her left foot/leg. Some rails in time past on the garage wall to aid her into and out of the car are now her aids to do sit-stands, she sometimes does foot movement exercises and I am leaving her to transfer herself, whenever possible, onto and off the loo. My right hip no longer freezes in pain, the enforced "respite" of 3 weeks while she was attended by nurses, usually in pairs, has taught me a lesson. And of course her leg dyskinesias still occur, although perhaps somewhat reduced. So hard to place a measure on such things. While she was in hospital I kept her Dupdopa flow rate constant at 5.5 mL/hour.
But what is driving me to distraction is her "punding", the obsessive/compulsive nature of many of her activities. Today I bought online a very short paper (cost me $50 local currency for 4 pages and a video clip). The paper begins "Punding is defined as a constellation of complex, sterile and stereotyped behaviours including an intense fascination with repetitive manipulations of technical equipment, the continual handling, examining, and sorting common objects, excessive grooming, hoarding, incessant fidgeting at clothes or oneself, pointless driving or walkabouts, and the engagement in extended monologues devoid of rational content." Practical Neurology 2007; 7:397-399 O'Sullivan, Evans, Lees.
Some months ago our punding experiences began with her collecting my loose change for counting and sorting and placing into plastic bags. Once was enough but she did it repeatedly to check the total and to add fresh coins. The compulsion was resolved by taking the lot, $200 or so, to the bank. There must be a lot of loose change around the house again but she is yet to begin counting again.
Then the idea to make a vest with a pocket into which the Duodopa pump could be fitted became a major project. Although she has been a sewer all her life, from her teenage years making many of her own clothes, this project was beyond her. After stitching seams she would decide they were not straight so with small snipping scissors trimmed off the excess, go too far, then have to start again. That was resolved by buying several ready made vests onto which she was ti attach suitably sized pockets to accept the pump, Again she had problems sewing the seams and thinking they lacked strength, repeatedly stitching over again and again. I bought myself a lightweight jacket which needed an additional inside pocket to accept my book reader; much the same happened, crude irregular stitching that was covered with strips of bias binding which was also badly sewn on. She knitted red wool panels to be sewn together, had similar sewing problems, snipped the excess edges, filling the house with shreds of red woll. Perhaps these examples are not exactly punding, but the doggedness, refusing to give up, an inability to sit back and see what was going wrong,
She becomes mesmerised looking at the screen of her smart phone, the screen of the T-hub phone station, meanders around her Surface Pro menus becoming lost not knowing how or why she is looking at a specific window, clicks on suspicious emails and links without recognising dangers, I need to remove add ons & toolbars she has no idea she has installed.
A few months ago she spent days repeatedly sorting and positioning her porcelain and crockery in the cupboards. Every so often she resorts the fridge contents and the food pantry, making me very irritant when unable to easily place my hand on something. I am on a delivered-to-the-door frozen dinner diet (it works!) of which most of the items are kept in a small freezer in the laundry - she sorted all the items making it difficult to locate specific daily items. She sorted the contents of the laundry cupboards where I store the supplies of her incontinence bloomers so it was difficult to figure out what stocks had to be ordered. She sorted all the kitchen cupboards when all that was needed was restacking (I do tend to toss thing into an appropriate cupboard from the dishwasher). She has cleaned & sorted her sewing room at least 4 times, gradually throwing away many items and pieces of fabric.
Her latest effort was to re-arrange our bedroom, unplugging CB's, mobile phones, bedside lamps, CPAP machine, the adjustable beds then repositioning her bed and bedside cupboards, the "nurse's station" holding Duopdopa aids & accessories, and all from her wheelchair! In doing so she triggered the emergency call system so I had to convince the operator it was only a false alarm. We had a domestic about all this and I never found out why she decided to re-arrange the bedroom. She began it again today because a small LED clip on bedside lamp was not appropriately positioned for her last night. Fortunately I found power cords tangled in the mechanics of the bed before too late.
O'Sullivan et al quote others who say "punders were taking higher daily amounts of doperminergic medications than non-punders". I suspect she commenced Duodopa at the equivalent level of the multiple Sinemets she was taking beforehand without allowing appropriate compensation for the efficiency of Duodopa delivery. Also, professionals have said that her diphasic dyskinesias are likely due to over medication. As I see it, both effects are to be minimised by reduction in Duodopa flow rate, so some days ago I reduced the flow by 0.2 to 5.3 mL/hour and again today by another 0.2 to 5.1 ml/hour. Much faster than suggested by Dr F a few months ago. Can anyone tell me of the dangers, other than some discomfort? We both of us are both in serious discomfort at this time, physically and mentally, matters can only become better.
I feel much better for having written this tonight, even though doing so has taken some 3 hours, with a few interruptions. Even if no one ever reads my words, I don't care, and I don't allow the great unwashed agnostics about Parkinsons comment. Now to complete tonight's going to bed tasks for her to wake to a better tomorrow in the morning.
P.S. Try Googling "punding" and "Parkinsons Disease".
In my last post I was in error when I described how far she had walked with her new walker; rather the distance was probably less than 20 metres, after that she was in her wheel chair. The day after returning home the physio from Wild Dog had her use the new fore-arm walker. I recorded half the period she was on her feet; you may see the clip, until I remember to delete the share, at
https://drive.google.com/file/d/0B3e-dSmNja1dQnBSS3NCMTVtaWs/view?usp=sharing
The surgery for her L5 stenosis was well done technically, it healed properly, she experienced no more pain than expected following an operation of that sort. But so far no improvements in the mobility of her left foot/leg. Some rails in time past on the garage wall to aid her into and out of the car are now her aids to do sit-stands, she sometimes does foot movement exercises and I am leaving her to transfer herself, whenever possible, onto and off the loo. My right hip no longer freezes in pain, the enforced "respite" of 3 weeks while she was attended by nurses, usually in pairs, has taught me a lesson. And of course her leg dyskinesias still occur, although perhaps somewhat reduced. So hard to place a measure on such things. While she was in hospital I kept her Dupdopa flow rate constant at 5.5 mL/hour.
But what is driving me to distraction is her "punding", the obsessive/compulsive nature of many of her activities. Today I bought online a very short paper (cost me $50 local currency for 4 pages and a video clip). The paper begins "Punding is defined as a constellation of complex, sterile and stereotyped behaviours including an intense fascination with repetitive manipulations of technical equipment, the continual handling, examining, and sorting common objects, excessive grooming, hoarding, incessant fidgeting at clothes or oneself, pointless driving or walkabouts, and the engagement in extended monologues devoid of rational content." Practical Neurology 2007; 7:397-399 O'Sullivan, Evans, Lees.
Some months ago our punding experiences began with her collecting my loose change for counting and sorting and placing into plastic bags. Once was enough but she did it repeatedly to check the total and to add fresh coins. The compulsion was resolved by taking the lot, $200 or so, to the bank. There must be a lot of loose change around the house again but she is yet to begin counting again.
Then the idea to make a vest with a pocket into which the Duodopa pump could be fitted became a major project. Although she has been a sewer all her life, from her teenage years making many of her own clothes, this project was beyond her. After stitching seams she would decide they were not straight so with small snipping scissors trimmed off the excess, go too far, then have to start again. That was resolved by buying several ready made vests onto which she was ti attach suitably sized pockets to accept the pump, Again she had problems sewing the seams and thinking they lacked strength, repeatedly stitching over again and again. I bought myself a lightweight jacket which needed an additional inside pocket to accept my book reader; much the same happened, crude irregular stitching that was covered with strips of bias binding which was also badly sewn on. She knitted red wool panels to be sewn together, had similar sewing problems, snipped the excess edges, filling the house with shreds of red woll. Perhaps these examples are not exactly punding, but the doggedness, refusing to give up, an inability to sit back and see what was going wrong,
She becomes mesmerised looking at the screen of her smart phone, the screen of the T-hub phone station, meanders around her Surface Pro menus becoming lost not knowing how or why she is looking at a specific window, clicks on suspicious emails and links without recognising dangers, I need to remove add ons & toolbars she has no idea she has installed.
A few months ago she spent days repeatedly sorting and positioning her porcelain and crockery in the cupboards. Every so often she resorts the fridge contents and the food pantry, making me very irritant when unable to easily place my hand on something. I am on a delivered-to-the-door frozen dinner diet (it works!) of which most of the items are kept in a small freezer in the laundry - she sorted all the items making it difficult to locate specific daily items. She sorted the contents of the laundry cupboards where I store the supplies of her incontinence bloomers so it was difficult to figure out what stocks had to be ordered. She sorted all the kitchen cupboards when all that was needed was restacking (I do tend to toss thing into an appropriate cupboard from the dishwasher). She has cleaned & sorted her sewing room at least 4 times, gradually throwing away many items and pieces of fabric.
Her latest effort was to re-arrange our bedroom, unplugging CB's, mobile phones, bedside lamps, CPAP machine, the adjustable beds then repositioning her bed and bedside cupboards, the "nurse's station" holding Duopdopa aids & accessories, and all from her wheelchair! In doing so she triggered the emergency call system so I had to convince the operator it was only a false alarm. We had a domestic about all this and I never found out why she decided to re-arrange the bedroom. She began it again today because a small LED clip on bedside lamp was not appropriately positioned for her last night. Fortunately I found power cords tangled in the mechanics of the bed before too late.
O'Sullivan et al quote others who say "punders were taking higher daily amounts of doperminergic medications than non-punders". I suspect she commenced Duodopa at the equivalent level of the multiple Sinemets she was taking beforehand without allowing appropriate compensation for the efficiency of Duodopa delivery. Also, professionals have said that her diphasic dyskinesias are likely due to over medication. As I see it, both effects are to be minimised by reduction in Duodopa flow rate, so some days ago I reduced the flow by 0.2 to 5.3 mL/hour and again today by another 0.2 to 5.1 ml/hour. Much faster than suggested by Dr F a few months ago. Can anyone tell me of the dangers, other than some discomfort? We both of us are both in serious discomfort at this time, physically and mentally, matters can only become better.
I feel much better for having written this tonight, even though doing so has taken some 3 hours, with a few interruptions. Even if no one ever reads my words, I don't care, and I don't allow the great unwashed agnostics about Parkinsons comment. Now to complete tonight's going to bed tasks for her to wake to a better tomorrow in the morning.
P.S. Try Googling "punding" and "Parkinsons Disease".
posted by Kilpike | 10:19 pm
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