Part 2 of 3 - Daily Tasks
The pace of conducting routine daily activities, i.e. brushing teeth, dressing, preparing meals, taking meds., and bathing, has slowed since being diagnosed with Parkinson Disease in 2004.
In part two of this series, I will explain the barriers incurred while conducting normal daily tasks, and how those barriers must be challenged and broken down if possible. Hopefully, the level of detail used to describe the challenges will be both informative and helpful.
Regardless of where you are in the progression, how you deal with these issues as the disease progresses will be important to attaining the best possible level of quality of life.
Comments and questions regarding this series are welcome. Post them in the 'Comments' box at the bottom of this article.
BRUSHING TEETH:
A morning when the first med. (Stelavo at 5 a.m.) has had sufficient time (20-30 min.) to be dissipated throughout my body, I can be assured brushing my teeth will not be a problem. If I begin the task before the med has reached full effectiveness, it will be a slow start to my day.
For example, without sufficient dopamine, the brain does not communicate with the fingers to extend themselves and grasp the toothbrush. However, if I specifically look at the toothbrush, focus on it for a second or two, the arm will move in the direction of the toothbrush while the fingers slowly get the message to align themselves in a curved manner. As the fingers come in contact with the handle, the sense of touch with the object is relayed to the brain. In return the brain now knows it must send added instructions to the fingers to close on the toothbrush.
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| Rest the toothbrush on a vanity before applying toothpaste. |
On occasion, when applying toothpaste to the toothbrush, then lifting the toothbrush to my mouth the forearm does not engage itself to make the quick up and down motion to begin the brushing action. So I must allow time for the med to do its job first. That's OK if there is no activity planned for the next hour,or there are no house guests to accommodate. If there is an activity planned for first thing in the morning more time must be allowed to finish all needed tasks.
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| Up and down motion can be an issue. |
You might say, get an electric toothbrush. That would create a new set of tasks my brain would need to learn, i.e. plug in the apparatus, apply toothpaste without hitting the on switch, and of course controlling the apparatus in my mouth. I contend, there is better coverage of all my teeth by using a manual operation compared to an electric apparatus. In fact, I was in for my 6 month dental checkup and cleaning this week. The hygenist told me she was impressed with the condition of my teeth, in terms of the minimum amount of plak deposited on them.
TIMELY MEDS:
Normally my day begins at 5 a.m. I position the first dose of Stelavo for the day the night before. It goes with a glass of water on the nightstand beside the bed. The first dose is taken before getting out of bed. Allowing 20 min. for the med to break down, I am then able to begin early morning hygiene tasks without incident. Experience tells me the dosage will provide me full mobility for up to 4 hours. I can extend that a bit but I have learned my lesson.
June 2012: I had to be on the road by a certain time for a 30+ minute drive to the Aurora Center for Active Adults in order to catch the bus for a day hike. I awoke almost an hour later than normal and was forced to skip a number of early morning tasks. I took the first med of the day before finishing a few must tasks before leaving the house, i.e. dressing, filling the water bladder in my day pack, and having a light breakfast.
While loading my water bladder, I began to experience a series of painful cramps in my calves that forced me to stop and fight off the immediate discomfort. The med was not yet close to providing peak effectiveness. I struggled to my vehicle. Ten minutes later, I could feel the normalization of my lower legs. The cramps had stopped. When I arrived at the bus, my legs felt normal. There was no weakness or cramping.
Once on the bus, it would be about 2.5 more hours of travel to the trailhead. After cinching into my day pack, I was on trail hiking for an hour or more enjoying the beauty of mother nature when I felt the sensation of my knees beginning to lock up. Frozen joints are classic to a person with PD. I immediately checked my watch, to learn I had missed my second med. of the day. My routine had been broken that day. One knee did freeze up while I struggled to find a log close by to sit down. If I would not have had my trekking poles to lean on, it is likely I would have dropped to the trail bed and crawled on hands and knees to the log to take my med. I took the med with water, waited about 20 min., tested my joints by flexing both knees, then got back on trail and enjoyed the balance of the hike. I have not made that same mistake since.
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| Stelavo (reddish brown pill; Namenda (white pill); and Exelon Patch. |
In terms of current meds., Stelavo (200 mg.) is taken at 5 a.m., 9 a.m., 1 p.m., 5 p.m. and 9 p.m. This drug is mfd. by Orion Corp. (Finland) and marketed by Novartis Pharmaceuticals (Swiss).
How does the drug work? It is a combination drug consisting of levodopa - carbidopa - and entacpone used to treat PD. Levodopa helps to control the symptoms of PD by correcting the chemical imbalance of chemicals in the brain that produces symptoms. Levodopa is converted to dopamine in the brain, which the brain no longer produces. Carbidopa helps to make more levodopa available for transport to the brain. When given in conjunction with levodopa and carbidopa, entacapone provides more constant dopaminergic stimulation in the brain.
I also take Namenda (10 mg.) at 10 a.m. and 10 p.m.daily. Namenda blocks the excess production of glutamate slowing the destruction of neurons in the brain. Glutamate is a chemical messenger involved in storing, processing and retrieving information from the brain. If left unchecked glutamate causes neurons to die. The absence of these neurons is thought to lead to dementia and other memory issues that are key to both PD and Alzheimer's disease.
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| Applying the patch. |
Finally, I also apply the Exelon Patch. The rivastigmine transdermal system is used to treat those with memory problems associated with Alzheimer's and Parkinson's disease. Applied once daily to a different spot on my torso each morning, the med delivers 25 mg. into the skin over 24 hrs. The patch is mfd. by Lohmann Therapy Systems Corp. (W. Caldwell, N.J.), and distributed by Novartis Pharmaceuticals Corp. (Swiss).
SLEEPING:
My day usually comes to a close anywhere between 9 and 11 p.m. Going to bed at 9 might be after a day of hiking in the back country, with 1000+' of elevation gain. Add two+ hours of travel each way and it makes for a long day. That occurd every Tuesday. A later bedtime could be the result of having family members at the house for dinner or playing dominos or ping pong with the grandsons.
I can expect to fall asleep within 30 min. about 80% of the time. The other 20% is a tossup regarding what tactics I use to get my mind and body relaxed. Those tactics include slipping into earphones to listen to the radio or classic rock music on CD. I may choose to do some reading until I feel tired enough to sleep. In a pinch, I may turn on TV for late news of the day, but that is rare. If I get a good nights sleep...5+ hours of continuous rest...it's likely those hours will be after 10 p.m.
One issue that continues to plague me during the night is turning to one side or the other. Although I am most comfortable lying on my back, there comes a time when an impulse causes me to change position. When that occurs, I have learned that simply positioining my arms and/or legs in such a fashion so as to provide the leverage needed to turn my body over, is not a quick or easy task any more.
If it has been over the normal 4-hour block since my last med. my body is now coming off, or is totally off meds. Considering, the brain is not sending instructions to the arms and legs on how and when to move, I must literally focus on moving my lower legs to position each of them to begin providing leverage to twist my lower torso. My arms and hands are not receiving instructions to position themselves so as to turn the upper torso in line with the lower torso.
What happens next? With focus on one leg, I am able to slowly bend the knee, moving it into position. With focus on the other leg, it too is moved into a similar position. If there is no sense leg cramps are about to begin...forcing me to drop both legs and stretch them out including the toes to avert full blown painful cramps. With little to no dopamine in my body, cramps can be initiated simply by allowing a leg to be bent for an instant.
Sometimes a change of position allows me to fall asleep. Other times the routine must be done again and again before I am able to drift off. Each change of position takes a few minutes.
Normal comfort level has much to do with body heat retained under the covers. I am a person who can be comfy most nights with only a sheet to cover me. There are also nights when a sheet is too much. Constant change of positioning of a sheet, and/or blanket can be a time-consuming effort as well.
PD has affected my keen sense of touch. Although my fingers might be grabbing the end of a sheet covering me, my brain does not immediately register the full sense of my fingers touching the sheet.
Every element of changing position, itching an itch, adjusting a blanket or pillow, takes added time.
BATHING:
So far, this task has not caused any hardship. There are times my fingers don't fully grasp the wash cloth or feel the soap in my hand. Again, if I look at my hands and focus on the task my hands and fingers need to do the message of what to do will get there.
Scrubbing action...like brushing teeth...with a wash cloth can be slow. I've noticed when washing my arms, either hand is not receiving a continuous message from the brain to do a continuous back and forth motion.
Balance in the shower can be an issue, although at this point, a minor one. When turning in place in the shower, I may loose my balance. So if I place one hand on the tile wall beside me as a third point of contact, I feel more stable and can turn in place.
When washing my face with a wash cloth, the use of one hand may not be effective. So I use both hands positioned under the cloth, with the sides of my little fingers touching, to move it up and down across my face.
Bending over to wash my legs and feet, can cause my balance can be compromised. By either leaning against a wall or sitting on a bench in the shower will eliminate the problem.
DRESSING:
Tee shirts are a problem. Going from having both forearms slid through the sleeve holes to lifting my arms with the shirt overhead in one smooth motion has become an issue. Once overhead, it takes extra time to inch the shirt down my upper arms and over my head. The most difficult part is with both arms extended over my head, and the tee stretched between them, to get my head through the opening and the tee over my shoulders. Plus raising my arms up under my armpits to pull the tee down over my torso can take a few minutes, especially after a shower when my skin is still not totally dry.
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| If unable to grab the zipper tab... |
Shirts with buttons are time consuming. I once took pride in wearing button down collars to the office each day. Now, I have mostly button-free collard shirts. If I select a shirt with buttons, I know the time needed to dress will be longer.
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| ...affix a zipper pull on the tab. |
Zippers are also difficult. If the tongue is lodged flat against the teeth at the bottom of the zipper, I may not be able to recover it without first removing the item of clothing. Remedy: I have invested in zipper extensions to avert the issue.
Tying my shoe laces has not been a problem yet.
TOILETING:
One issue has been that of realizing the exact direction of urine flow into the urinal. The sense of touch only has to be off a fraction in order for the stream to be misdirected. The answer: Always turn the light on at night, and focus.
EATING:
Opening a box of cereal for the first time requires extra time. If fingers are not fully in sync, I may use a dull kitchen knife to break the seal of the cereal box top. The inside sealed bag containing the cereal can be a problem. Again, if fingers are not getting the message to do their job...be flexible...I may simply poke a hole in the bag and make a moderate size opening sufficient to release cereal.
Opening a carton of milk can be a challenge. A cardboard container can be more difficult than a plastic twist top on a bottle of milk. With a cardboard container, there are a minimum of two operations the fingers must complete in order to open it. First, break the initial seal of the cardboard flaps by exerting pressure with the thumb and forefinger on either side. Second, and most difficult, is to break the thin seal to the inside of the carton by grabbing the cardboard flaps between the thumb and forefinger and squeezing the flaps together, opening the carton. There have been more than a few mangled milk cartons in the refrigerator.
Until recently, reaching for an empty water glass was not an issue. When my hand and fingers begin positioning themselves to grab a glass, I find myself physically looking at a specific glass, as if I somehow am willing my arm to extend just enough to allow the fingers to do their job next. On occasion, I have found the other hand coming to the rescue of the first hand, as it cups the back side of the water glass so as to nudge the glass into the hopefully fully extended fingers of the first hand, securing the glass.
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| Getting messages to hands and fingers can take added time. |
In addition, I have found that when carrying a full glass of water, juice, or cup of coffee, from one place to another, the second hand is either loosely cupped around the container, or positioned so as to be there if my brain does not communicate instructions to the hand and fingers.
The use of table utensils is not a concern yet, although again, the pace at which I place food on my plate, and cut meat or vegetables has been slower as time goes on. When I need to change from holding a fork, back side up, to secure food when cutting, to holding the fork normally to select food, hand and finger movement is not always smooth.
These are the issues I am currently focused on in the course of the day. I know each of these tasks will become more and more difficult and time consuming in the future. I am grateful, however, that I am able to function normally, doing the things I enjoy.
STRESS:
It doesn't happen often but occasionally when I am with family or friends, a slight bit of stress can cause me to refocus.
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It shows again that the brain cannot feed details about the subject being discussed fast enough in order to get those details to the mouth to keep the train of thought on course.
Part 3 of this series will cover 6 elements of life with PD.
- Mobility
- Communication
- Nutrition
- Exercise
- Executive Functions
- Emotional Well Being
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