November 22, 2017
Who needs it.
Actually, I am dreading writing this post, but it’s at the heart of adaptation. Until this last year or so, I didn’t think I thought much about it, I know lots of people who are not as independent as we have been. Some from birth, some due to illness or accident, many of them older like Jan and I. Then I realized that I had identified that I had to learn to become dependent on God and my fellow human beings on our church’s website when I became a “pastoral support” person. This was about 6 years ago. Parkinson’s had been my unwelcome companion for 5 or 6 years, but I was still quite independent. I also did a half sermon (yes there is such a thing, at least it is now) and guess what topic I picked? You got it, being dependent. I must have just stuck my fears in a part of my brain where there is no light. Now before I go off in a rant, I want to acknowledge all the wonderful people on whom I have become dependent, without whom our lives would be so much less.
Just a rant
Losing one’s independence is not a straight path, especially for a Parki. If you ask me if you can carry my luggage upstairs, say at 9.00 p.m. I will gratefully accept that. If you ask me to carry it down the next day at 9.00 a.m. I may refuse, saying “I can do it”. If you insist, I may actually get a little huffy about that. You probably think I’m just an ungrateful old goat but in reality it’s my medication that does not work about an hour after supper and will probably work quite well in the morning, depending on what I had for breakfast . Some times I need my cane, sometimes I don’t, please don’t insist. People say each day may be different; true but each hour may be different too. Some things are unpredictable and I have to accommodate these. Some things may be impossible all the time, for example, I am unable to drive at the moment. I still hold out hope that some day, perhaps with the aid of Deep Brain Stimulation, I can get behind the wheel and go wherever I want too once again but for safety’s sake this is not the time. Stuff can add up too; I believe this is called the “cumulative effect” of various things ganging up on one person, couple or family. In our case Jan lost her license after a small stroke, so we are completely dependent on others to go anywhere. That knocks out a lot of opportunities and as someone said not too long ago, it deprives us of many spontaneous outings or experiences. Loss of personal abilities, once taken for granted, now require “coordination”, ‘foresight” or you just skip it. Often times I go barefoot at home, just so I don’t have to fight with my socks or get someone else to help me. Rolling over in bed becomes a major hassle. Remember this is just a rant about feeling you’re losing too much; I don’t mean to whine and I’ll be more balanced again pretty soon, I promise. But right now I just want to say in scientific terms “this just sucks, I hate it, why are you doing this to me, enough already, let me go”. I can cope with the symptoms of Parkinson’s but I can’t always cope with not being able to do things. For a long time, when people asked me if I would like to go back to work, I’d say yes. Eventually I realized that it was the “ability to go back”, rather than the deed itself that I wished I had.
Coping with disability
Some people just hole up, but to me that is like crying “defeat”. I don’t want to go into hiding, that would make for a very small world indeed. Of course railing against becoming dependent is like kicking a huge rock, the rock does not hurt or move or change but your feet will surely hurt a lot, probably for a long time. Rather than having a pity party I have learned to look around me and make some sense of this. There are millions of people who have fled their own country, leaving everything behind. Millions more experience famine, untold thousands of people lose their children every day. Compared with those horrible things, I have nothing to complain about. So what I have Parkinson’s, a few wild hernias, and bits of cancer. Instead of feeling sorry for myself, I listen and look for other people’s examples.
Good examples to follow
The first individual person that comes to mind is the late Judith Snow, a person who would be entitled to an ongoing pity party for years to come. She had paraplegia at birth and suffered from a condition that eventually denied her all movement below the neck. She was in an electric wheelchair and was almost totally dependent on others, including the very intimate parts of her life. However, she carried on a full life as a writer, actor, nature enthusiast, communist and an internationally renowned champion for inclusion. The above information taken from an article by James Cullingham of the Globe and Mail June 30, 2015. Ms. Snow spoke a lot about various gifts; the one I remember quite clearly goes like this: “ to be able to walk is a gift, to not be able to walk is also a gift, to be able to talk is a gift, to not be able to talk is also a gift”. How is that possible? I belief the answer is that if I can walk, I can serve (help/assist) someone else but that person also provides an opportunity for me to serve. Same with talking. Perhaps here multiple opportunities exist, for this person will need a speech therapist as well as a communication specialist and possibly an electronics person and a day-to-day assistant. In a different context I have heard Pastor Doug express the same sentiment in a Christian environment. .We don’t have to feel upset because we need help; we are creating an opportunity for others to serve. We can go a step further and see all of us not as independent or dependent beings, that would create a 2 class society, but rather an interdependent carrying on, as my colleague and good friend Norma so eloquently reminds me of from time to time. Who sells my bread, that was brought by a truck driver, stored in a warehouse, grown by a farmer from seed developed by a university professor via a corporation? Who sells me milk, clothes, etc?. Since we all have certain gifts, we are all takers and givers, perhaps at different times but likely at the same time. Ultimately everything comes from nature or God if you will. It all fits, I’m happy again. Once again I’ll thank all of our supporters for the marvellous work they do. If I’m occasionally a bit grumpy, don’t take it personally, just be cheerful. It’s my problem and guess what: I’ll get over it. Have a gr8 day. Casey
Things we use 3.
‘What, more things we use; when are we getting to the juicy stuff?” Some readers may ask. I’ve been thinking about dependence, but that may be too much. Do you have any thoughts about that? I’m slowly discovering that I have very strong feelings about that.
Hello all: carrying on my blog. I thought I would spend one more blog talking about things that can make our lives easier and sometimes possible.. Before I do that, I just want to give a shout-out to Jennifer Robinson’s website that includes so many devices, it makes your head spin. All nicely broken down into categories such as bath, bed, recreation, etc. I hope you can just click on the address and go there. www.helpmedevices.com
Today 4 small items and 3 not so small ones.
First off an actual electronic item: an iPhone. I’m sure androids and other platforms will work just as well. Of course these smart phones and their apps can do all kinds of different things including surfing the Internet, keeping your health information and finding your way to unfamiliar places. For my Parkinson’s I rely on my iPhone to tell me when to take my levodopa. At the moment 2 hours apart, at least during the day. Without the phone alarm, I would more often get into unnecessary off periods. The better I feel, the more likely I am to wait too long but the phone has no mercy and will tell you to take your medicine. Of course you can override this but why bother.
With diminished fine motor control I found it increasingly difficult to open the childproof bottles and guess what, we have no children, especially little children, at home. So the pharmacist started giving us the easy-open bottles. Nice and easy until the day I put several in a travel case and by the time we reached our destination, my pills were thoroughly mixed, quite a party. Lol. For those times a screw-top is wonderful and I’m sure your pharmacy would gladly accommodate you, or perhaps you have some “empties” laying around.Just think ahead, not always an easy task for a parky.
I am just putting this on the list to represent the many items available for all of us. Getting the long shoehorn works a lot better than the short one, once you can’t get down to shoe level.
I was going to skip this, it is rather personal but then, someone might be able to use this information. Actually I don’t belief I need this for my Parkinson’s but rather for a pair of hernias I entertained for a while. It also may be more relevant for those like myself who are over 6 feet (180 cm) tall.The best part of this are the 2 sidebars you can use to get up. I don’t think I have to mention cleanliness or to pick your bathroom because not everyone needs to see it. Not that there is any shame in it; it’s just another piece of mostly plastic which functions as an assistive device.
Electric lights (no picture)
It’s not too long ago in history that nobody had electricity; I can only imagine what life was like then. I’m putting it on my list because it seems to me that with enough light I’m just incrementally more mobile than in complete or almost complete darkness. We always use a night light. Of course the sleep hygiene experts tell us no bright lights during sleep but a little bit of light is a good thing. Every bit of mobility, especially at night when I take much less levodopa, is welcome and increases safety. Sorry, no picture because there is such a wide variety available.
Ledge underneath tables
Once I began having trouble getting up from a chair, I automatically, because our bodies look for ways to adapt, reached out to the nearest table, grabbed it and discovered a ledge underneath. I would not be surprised if most people know this but somehow I missed seeing it before. It greatly helped, and still helps,
me to get up. It does not look very elegant but it works. I since discovered that most tables have such a ledge. One caution though, if you are strong, you want to be careful not to pull too hard or you might pull it over. I’m sometimes afraid I’ll rip our table from the wall to which is is fastened. I would encourage you to look under your table, if this would improve your life. Sorry, the picture is a bit dark but I’m sure you get the idea.
Man purse, also called Murse
As my fine motor skills deteriorated, I was starting to have difficulty with my wallet. Often credit and debit cards as well as coins and paper money landed on the floor. Usually some kind person picked it up for me, often total strangers. I got rid of the wallet and got a bag with 2 compartments, one zippered up and one open. It has straps so I can hang it on my shoulder, or better yet, hang it around my neck. Now I can get my hand in the bag and manipulate the contents without dropping anything. To be more precise, I still drop them but now they remain in my own murse and I can try again. The only two problems are forgetting the thing and keeping the contents organized and pruned down. It is really easy to let it fill up, and loose part of the benefits. I stand in awe of the ladies who carry purses with umpteen compartments but they know where everything is. What school did they go to to learn that? It was not the Parkinson’s Academy, I know that much. Anyhow, the murse is a big improvement. Mine came from Jamaica, but I’m sure you can find one in any town or city.
Final word about “things” for now.
I have only scratched the surface of things that can help us; just a small sample of what’s available. More and more things are developed or adapted. Keep your eyes open, the simplest and cheapest items are often the most useful.
Until next time, goodbye