Tuesday, August 23, 2011

Summer at the Lake

I am spending a fair bit of time at the lake right now. Cottage life is a real gauge for me of how much I am improving. You tend to not see changes when you are dealing with your day to day life, but at the cottage I am comparing my activities to what they were last summer.  I told a lady at my Stroke Recovery Support Meeting that I was going to the lake and her response was something of a harsh .. "nice for you just getting to relax at the lake.".  It couldn't be farther from the truth. I don't want to spend my days just relaxing,  I want to cook fun meals, I want to chop wood for the fireplace.  I want to go swimming,  hiking and boating and I want to be helping with the work of repairing and maintaining the cottage. I work very hard to towards those goals and I participate as much as I am able.

My cottage is a little primitive to say the least, but it is the place in the world that makes me the happiest. It is the only cottage on a 5 acre island, and is run on solar energy with a propane stove and BBQ and no fridge. We have had the place for 28 years now and mainly we putter with it making tiny changes each summer. Now we are at the point where we are starting to redo the repairs we made when we first bought the place. The walls are creaking, the paint outside is peeling, the floor is slanting a little, and dock boards need replacing.
 Last year I literally had trouble walking over the floor because of a little slant. This year I only notice it when I am overtired. The 5 steps to get in the cottage are a bit rickety and steep but this year, as long as I am holding the rail I do okay. Midnight trips to the outhouse involved waking up my husband to get me down the back stairs and over a few feet of rocky terrain, This year we understand my problems so much better. We have changed the step and added a whole lot of solar lighting and I can cope on my own much to my families "night time relief".

My other huge issue has been getting in and out of the boat at the docks. We have just resurfaced the mainland dock and there is a dock pole in the just the right spot to hang onto. The dock still needs a bit of leveling but having an even, secure surface is just wonderful! Both docks are solid docks, not floating, and once I get up on it I stop and take a minute to stop feeling dizzy from the upward move.  Getting in and out of the dock is not the simple matter of hopping over the side that it once was and now I need a hand getting out, but this year it doesn't involve 2 peoples help. Last year we needed one person in the boat with me acting as a counter weight and supporting my hip and someone on the dock pulling me upward. It usually wound up with me crying and wanting to vomit.

Next weekend I am going to try swimming in the lake again. Last year I got in the water only one time with great difficulty and once I was in the water I found myself unable to tolerate the movements of tiny little waves against my body. 

A couple days ago my husband installed a swimming pool ladder onto the end of our dock. When he  put it in we found it actually touched a flat rock at the bottom so when I climb  down  I will only be in at thigh deep on about a 2 foot wide rock platform.  All the rest of the way along the dock is deep enough to dive off of.  I think the ladder will make all the difference in my being able to get in and out of the water.  When I was doing pool therapy last year my physiotherapist and the aquatic therapist felt it was a safety issue for me so we put a lot of energy into figuring out how to  use a ladder and get in and out of the pool safely using a ladder and not just ramps or steps.

Here is my to do list for next weekend:
  • cut up some more kindling with my clippers
  • go swimming using my new ladder
  • help lay laminate flooring on my screen porch
  • do my at home physio exercises
  • practice Guitar. (I have hardly practiced all summer)
  • play a card game (think cognitive therapy-- still very hard for me and not a lot of fun)
  • work a bit on a little craft for Christmas
  • If time and weather allows- help husband paint small bedroom OR power wash our huge dock

Linda-- Fall 2010
And yes, I will still find time to lounge in my adirondack chair on the dock while reading a magazine, and we will sit on our screen porch and enjoy a relaxing candle lit dinner while watching the sun set.

Tuesday, August 9, 2011

Reading Difficulties

Reading has been a nightmare.

 I got sick when I was only a few chapters into a newly published book written by my close friend.  It was over two years before I was able to finish reading it.

I found that I could not read for more than a few minutes at a time. I was able to read words and I did know what they meant, but by the time I got through a paragraph I had no idea what I had just read.  I did not understand what was going on in the book or with myself.  I developed massive headaches anytime I tried to read.

Occupational therapy eventually explained a lot of my problems.  My damaged short term memory made it hard to recall what I had just read.  I needed to read and reread material and I often had to draw a few pictures and use a highlighter in order to follow written material.  I was not reading items to the left of the page--- I wasn't even noticing that they existed. When I had a book opened up I tended to read only the page on the right and not the one on the left. I also couldn't get my eyes to track from the end of one line to the beginning of the next line.

The massive headaches were at least partly related to the fact that both eyes were not tracking at the same pace. My left eye, just like the rest of my left side, was weaker than the right and the difference really showed when I was trying to do any finer eye movement.

While all this was going on I discovered that reading was far easier on the computer than reading printed text. Without even realizing what I was doing I developed a few coping strategies. I had the size of the print on my computer cranked right up. I changed the kerning on documents whenever I could. Computer articles are short compared to my books so I could manage to complete an article before my eye started to twitch and my face go into spasms. I learned to locate my lap top computer off to my right side and that seemed to help with the left side neglect.

My occupational therapist worked with me to find accommodations and exercises. I borrowed  bigger print books or used my photocopier to blow up smaller documents.  A ruler placed under each line I was reading helped me track across the page and helped me keep track of where I was on the page. I put a thin red strip of paper,  or a bright colored elastic band stretched over the book at the far left margin in order to draw my eye over to a "starting point".  I also worked on reading 5 or 6  times a day. Initially I could read for no more than 5 minutes at a time, and week by week we were increasing the time by a minute or so. Just like any other exercise, I slowly worked on building the muscle control of my eye back up again.

Last year my friend Sue published a sequel to her first book of young adult fiction. I still was not through the first one. I so much wanted to read the books and been able to discuss them with her and our friends. This past year I did read them both. I could enjoy the experience now instead of feeling mainly frustration and pain. Thank-you Susan for your understanding and for sharing all your talent!

In the past three years I have read less than I would have in a month before that. I used my limited reading ability to find books to help and support me and I have read very little fiction for fun. This past weekend I decided to read a newer Debbie Macomber romance novel while hanging out at the lake. No health and wellness related material for me for one weekend!  Once I got into the book I found out that the heroine was a lady with a severe leg injury. She works on learning to dance and ride in a paddle boat as well as work on self esteem issues related to being a disabled woman who is beginning a new relationship. So much for not thinking about disabilities. I just had to laugh.

Below are my reviews of most of the printed books I have read in the past three years.
Images are intended to give clarity and no copyright infringement is intended.

A Change of Plans: Women's Stories of Hemorrhagic Stroke
Sharon Dale Stone

Sharon Stone is a Sociology professor, and stroke survivor herself. She interviewed 11 women about their experiences after having a hemorrhagic stroke. This book was an incredibly helpful first read for me. I sat and cried through a lot of it as I realized how many of my issues were part of a stroke and not something that was a personal weakness or my fault. It was inspiring to read how these women of different ages and backgrounds coped with the consequences of their disabilities.

My Stroke of Insight: A Brain Scientist's Personal Journey
Jill Bolte Taylor

Jill was a well known  Brain Scientist who had a stroke. She seems to have had a remarkable recovery and has taken on  a new perspective from the experience. I loved reading her detailed account of her stroke and recovery process and hearing about the support of her family and friends. I even loved her baseline biology lessons. I am not as sold on the overall right brained, left brained world view that emerges as the book progresses.  Mainly I was inspired by how she has been able to recreate herself from her former role as a biologist to that of a successful  author and speaker.

Always Looking Up: The Adventures of an Incurable Optimist
Michael J. Fox

 Michael Fox was being interviewed on all the late night shows and I felt like I needed to read what he had to say. He really does a wonderful job with this autobiography as he shares a remarkable sense of optimism. It is not a passive "lets all think happy thoughts" version of positive thinking but rather a belief that positive things indeed can happen and life can be improved and he is motivated to take action to achieve such goals. I admire this very much. At one point he quotes the Lance Armstrong Foundations Mission statement: To inspire and empower cancer sufferers and their families under the motto 'unity is strength, knowledge is power and attitude is everything'.

Stronger after Stroke
Peter G. Levine

I started off by reading Pete's blog.  I learned so much from the blog that I became interested in reading his book too. I wish I had been capable of reading this book earlier in my recovery. Pete has a lot of information about physical rehabilitation techniques that every stroke survivor should learn about and so should the people who care for them. Peter's blog and book have allowed me to gain a better understanding about stroke recovery and how it works, and a bonus is that knowledge has also helped me in my communication with my therapists. I am following many of Pete's suggestions in my efforts to maximize my recovery, and I am very glad to recommend this book to other Stroke Survivors.

Moonwalking with Einstein: The Art and Science of Remembering Everything
Joshua Foer

This book was just what I needed to read this winter and I was surprised to find it really entertaining. OT taught me lots of memory strategies and this was like the advanced course. Josh Foer is a science writer who attended the US Memory Championships as a reporter. The following year he competed and won the competition! In this book he reviews science literature on the topic of memory in a very approachable way and he interviews many interesting people to get a perspective about memory and how it works. I have tried to use what I learned from this book and I  feel that it has been helpful to my everyday life.

The Shack: Where Tragedy Confronts Eternity
William P. Young

I read this book in the past month and it is pretty different from anything I have ever read. It is being praised by some church groups and condemned by others. I thought any book that was number one on the New York Times best sellers list for 70 weeks was worth a second glance. The book was actually good to read with lots of touches of humor despite the serious nature of the topic. I would say it is one approach to the question of why bad things happen in the world. Perhaps this in not a book for everyone, but I must admit I enjoyed the book and it gave me a few theological issues to think about.  I was drawn to this book because I am a bit preoccupied with the topic of good things coming out of personal tragedies.

Withershins and Spirit Quest
Susan Rocan

Last, but not least, are my friend Susan's great books for young adults. They are time travel adventures that teach about the history of our area and touch on many current issues relevant to youth today.  There are great realistic characters in a moving historical period. I look forward to her next novel!

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