Leaflets Three - Let it be!

This past week was Bob's vacation week and instead of having a great holiday or getting anything done I have been just miserable! 

We were at our cottage about three weeks ago when Bob cleaned out a small patch of poison ivy from the trail and wound up with a horrible rash up and down his arms. It is not like we have never been exposed to poison ivy before -- that's why we make the effort to eradicate it when a patch pops up. It has to be 10 years since we had any real problems. Horrible itching, rawness, oozing... yup we avoid it. Poison Ivy produces urushiol, an oily resin that it happily spreads on to your skin, shoes, clothes, boots, and tools.  The oil does not degrade rapidly and can lay dormant for years on objects. Quick washing with strong detergent can help break down the oil and prevent reactions, but you have to realize that you have been exposed. Some people, like Bob and me, have an allergic reaction to that oil. It is not even safe to burn the dead leaves because the smoke can affect the lungs of susceptible people.

Maybe I walked through it too and got it on my clothes, maybe Bob got it on our sheets. A week and a half ago I had a touch of rash on my side, and within a day had a massive reaction. Half my torso was covered with some of the typical blisters but mainly a hot raised inflamed area. The topical creams did nothing.  I wound up with it spreading rapidly further and further every day.

 My right and left sides do not have the same sense of feeling.   My left side was numb after I had the brain injury, but gradually it started to feel similar to when the freezing comes out after a dentist visit. Lately it has been even better with mainly a kind of duller sensation on the one side with fewer pins and needles kind of areas. My left side has had LOTS of sensation this past week but not itching or even burning like it should be, instead I have had .... serious excruciating pain as the sensation my brain was reading. I felt a lot like I had heat stroke with a fever, and nausea. My ever-present nausea was completely out of control and I was vomiting with the pain.

 I spent a lot of time crying and standing or sitting upright near a fan because there were no sides of my body left that I could comfortably lie down on.  My birthday was in the past week and dinner out was challenging. Hugs from the grandchildren hurt. I even had to go buy some clothes that were extra loose and not touching too many of the painful spots.

I saw my doctor on Monday and got put on:

• Prednisone

• Lots of Benadryl ( He said was probably a good thing that it knocks me out so I could get some sleep- don't drive or operate equipment)

• A extra heavy duty strength cortisone cream

• Calamine lotion to cover the cortisone cream and try to sooth the skin

I had to go back in five days because he was concerned I might have in infection or something else going on. Adults are not supposed to scream in pain with poison ivy-- it is supposed to itch miserably.

Things were better by my Friday doctor appointment and I got sent home with a prescription for more of the topical creams and my regular medications. I am on the mend with only a couple of minor newer spots in the past day.

We are going to the lake again this weekend. I am taking new sheets and we will be soaping anything down that Bob or I may have touched. We will be bringing home anything I can throw in the washing machine.... just in case.

I really do love being at the lake.

Summer Events with Independent Living Resource Center.

Independent Living Resource Center (ILRC) in Winnipeg is a wonderful and interesting organization that functions to meet the needs of individuals with disabilities. They have many many functions in our community but I have only been involved in a few of their more recreational functions so far. They host one or two seminars a month about safety and life issues. They also host a conference, some workshops and a variety of summer events.

Their summer events this year include a guided walk in Historic Downtown Winnipeg, an overnight camp at Fort Whyte Alive nature center, an adventure activity day also held at Fort Whyte and there will be a picnic at a different park in August. As well there is individual sailing for people with disabilities that can be booked through the organization.

I was not available to go on the waking tour but I have made it to the two events held at Fort Whyte.

The camp was as much fun this year as it was last year. My good friend Shawn came along and we had a great time together. We made new friends, ate good food and enjoyed the lovely surroundings; we went on some long walks and had a campfire. The highlight for both Shawn and myself was going sailing. Twice each!!!!

There were a couple of problems with the event. The fact that the organization's annual general meeting was the same night obviously put a lot of stress on the staff. They arranged to have streaming video into the camp common room so that everyone at camp could still participate in the meeting. That was a wonderful use of technology.

The most serious problem was the low number of people attending this year. I think there were only 9 participants plus the staff. At the opening of the camp it was announced that they had already made a decision to not have an overnight next year but have only a day camp. There is still the possibility that it could be done if they had the demand for about 30 people staying over. I could probably convince several other people to attend but how can I promote it and get my friends excited about an event that might not happen?

   The camp was seriously under-advertised.  I phoned inquiring about the camp because I had such a good time the year before. The person told me that there was no information available about such an event.  The first time I saw the poster and realized it was indeed happening was at their conference only a couple of weeks before the camp. Other people who attended the camp also complained that they had been unsuccessful in finding information earlier.  What about any new people who might have wanted to attend? There was no information or posters about the camp at any of the other organizations I attend either.

 

All these things can be fixed, so I am hoping it will all still come together for next year. An event like this is expensive to operate and no doubt is a stress on staff that only organizes something like this once a year. Accessible camping is a wonderful opportunity for making friends, and enjoying a variety of activities. Through Guiding I have attended a ton of camps and find that they are always stressful in certain ways but the benefits in learning, skill building and gaining independence are huge. At the same time fun, friendship, and team development are enjoyed. ILRC has a truly great location and good program already going and it will be a shame it this was the last overnight camp. 

I wonder what I can do to help with this camp and I am really not sure. I have lots of experience and I have lots of resources available and people who would volunteer to help at an actual camp, but how do you convince people that they should attend as a "camper"? How can you show people that camping can indeed be an activity almost everyone can participate in?

 I attended the Adventure Day last Friday and I brought 3 friends with me. We met at Stroke Recovery, did an hour of Tai-Ji and then my friend Sue was kind enough to load up her car with people, a walker and a wheelchair and drive all the way across the city to Fort Whyte. We got there in time to have the BBQ lunch. Hiking, sailing, canoeing, powerboat rides and museum tours were all available. One highlight was going bumping along the trails for rides on a Bison Buggy ... kind of a 6-seater golf cart. The problem was the heat! Oh my goodness the heat was unbelievable for Winnipeg and everyone was trying to find shade or go in the air-conditioned building. Sailing was a bit of a bust too because there was not even a breeze to move all that heat around. I got a bit of a sunburn but it was worth it to have a day out with nice people.  My friends agreed it was a good time, and would love to do it again.... on a cooler day!

Aquatic Sessions at the Hospital

Misericordia Hospital c 1910, Winnipeg Manitoba

Yesterday was my last water therapy session for the season.

I started going to water therapy about a year after I got sick. I kept being told by my physiotherapist how good the water would be for me but it took a long time before I was physically stable enough to cope in the water. The hospital I go to for outpatient therapy has a very old pool in its lowest level. It is a touch claustrophobic but oh so lovely and warm! The hospital is very old, completed in 1900, and the pool was originally set up as a recreation and fitness space for the nuns and the nurses that were trained there and lived in the attached residency.

The first time I got in the water I could not believe how dizzy and sick I felt from the movement of the water.  The visual aspects of the moving water and the feeling of the water moving against my skin along with the shear resistance when moving through the water make the pool very difficult, but the fact is that you are supported by the water and if you do loose your balance you are not going to fall down and break something. My first sessions were short and I needed a family member with me because after the pool session I was unable to get myself to the change room, never mind able to get changed once I got there. The car rides home were horrible and I needed to spend the rest of the day in bed.  Weekly I got in that pool with my Physiotherapist Vicky, the pools aquatic teacher Di, her volunteer assistant Vickie and about 5 other people who had serious movement issues. In retrospect I made really good progress and I am convinced that the challenges of moving in the water, while feeling safe and supported made all the difference in my recovery.

The next year my physiotherapist Vicky got a new job and I found myself with a new physiotherapist who did not do aquatic rehab programs so I was switched to trying new challenges on dry land. I am not sure if the water program was suspended for that whole year, but I know that for at least part of the year the pool and change area was closed down for some much needed upgrading. 

Once I was discharged from Physiotherapy, I got a hold of Di and asked her what my options were for water programs around the city. Di teaches several fitness programs around the city and has several group classes where she does the programming out of the Misericordia Hospital. I started attending one of her adapted aquatic fitness groups and it has been fun and beneficial. There is no missing the continuing improvement in my mobility and I give the water therapy and fitness programs a lot of the credit.

I have been going on Thursday mornings with a group of people with assorted health issues, such as arthritis, stroke, and muscle problems that make participating in normal aquatic fitness programs impossible. Di manages to inspire, bribe and motivate us and, yes- Di is not beyond bullying us for our own good. She is a great coach who is very knowledgeable and can customize the exercises and is acutely aware of the needs of each of her participants. Vickie, the long time pool volunteer, helps keep things organized and flowing smoothly. She adds to the safety of the pool experience and her smiling face and gentle style is very much appreciated by Di as well as all the participants. People who participate in the Misericordia aquatic programs find improvement in their pain levels as well as improved movement and do all that while having fun and making friends in a supportive atmosphere.

Next September I will be back in that hospital pool doing my exercises, but for this summer I think I better find a different pool and start work on my endurance and swimming skills.

The picture above is archival but I found it at West End Dumplings
I would have loved to have shared a picture of this neat vintage style pool space, but the paper work to get permission to photograph it was just not worth the effort.

Rainy Day and Dolphin Tale

It is a rainy, miserable day in Winnipeg and one of the first days in weeks that I do not have to be somewhere.

I read a facebook post from my new friend Rhiann who blogs at My Brain Lesion and Me

She noted that she was going to take it easy and watch a couple of videos, and one of the ones she listed was Dolphin Tale. I had also bought that movie but I did not watch it at the time because of problems with my DVD drive. I thought Rhiann's plan sounded great, certainly better than doing laundry, which was my first idea. I curled up in a blanket this morning and popped in the DVD.

I enjoyed Dolphin Tale. It made me cry a little.  I am totally entranced with marine life since my up close and personal encounter with a sea turtle last November so it was kind of a given that I would like it.  It is the fictionalized story about Winter, a real baby Bottleneck Dolphin that became entangled in a crab trap. Her tail was damaged and needed amputation but complications set in and the dolphin would not have survived without a prosthetic tail. The technical developments made to accommodate the dolphin have since proven to be of benefit for human amputees as well.

The story involves a young boy who bonds with the dolphin, and becomes changed by his experiences while trying to save her and advocate for her. There is a second and powerful theme of the orphaned dolphin becoming part of her Forever Family at the Clear Water Marine Aquarium. The last part of the movie shows real footage of the dolphin interacting with injured veterans and disabled kids. Yup I cried again.

The fantastic group of actors staring in the film includes, Harry Connick Jr., Ashley Judd, Kris Kristofferson and Morgan Freeman and featuring the dolphin Winter as herself. The movie may not be absolutely amazing, but it is very kid friendly and I found the rescue of this lovely animal to be fascinating. The movie a little slow moving but what the heck... that is how recovery and rehabilitation is in real life for dolphins or people.

The aquarium website has lots of educational material, games for kids, and even a webcam where you can watch Winter and her friends, (and they naturally sell a lot of products too). The web site for the aquarium not only is supportive of wildlife protection and rehabilitation; it supports great visits, camps and other functions. One of the big surprises is that they created a partnership with other organizations to form a campaign to encourage the placement of special needs foster children.  Bravo to the Clearwater Marine Aquarium! Here is an excerpt from that page.

Dreams can come true. Winter lost her family when she was entangled in a crab trap at only three months old. She was brought to CMA in the Winter of 2005 where she found her very own "forever family" of loving people and resident animals. Her new family worked tirelessly to help her overcome her physical challenges. Winter's new mom, Panama is also challenged in her own way; she is deaf.

Many kids in Florida's foster care system face similar challenges; they have special needs and have been separated from their birth families, live in foster care and now need adoptive homes. Winter was a "special needs" adoption and gives hope to all kids waiting to be adopted. This campaign is about raising awareness of the need for Winter to be adopted and for children in foster care to be adopted. It's a great opportunity to connect the two needs through a campaign called "Winter's Dream."

For more information please visit the Clearwater Marine Aquarium's website. http://www.seewinter.com/

My Quest for the Right Vocation

I have not written about my vocational rehab efforts for a while now. Things have been proceeding very slowly since I entered the program last September and I am not feeling much closer to having a job. A positive is that over the past year I would say I have continued to have improvement, both physically and cognitively, and  I think my job options should actually be improving.

I had a bit of a "hissy" fit two months ago when we were working on my resume. I did not like the direction things seemed to be going. I somewhat tearfully told my job coach that I thought we were going the direction of a slippery slope taking me somewhere I would be miserable. That was followed by a couple of phone calls and a meeting with me, my vocational counselor and the job coach to review our objectives and make sure we were all on the same track.

The results were that we stepped backward and added in the step of visiting a few people to interview them and ask what they do at their jobs.  We asked, "What are entry level jobs in the field?" and for other bits of information.  The thought was that my understanding of these jobs may not be well informed. When I heard from the people working at those occupations I might understand why some jobs that I thought I might like were not really what I expected and why other jobs that were not appealing to me from the outside were really a good job fit once I understood the details of the job.

"Coach" set up three appointments and also set up a long appointment where we looked at information about the organizations and developed up a list of questions. Coach and I then went on several field trips and met some really interesting people.

The first interview was with a lovely young woman who works very hard doing two jobs from two different funding sources. Basically she works as a coordinator of programs for young special needs clients at a large private recreation facility and she also is involved in a program from that facility designed to work on independent living skills and job readiness for special needs young adults. Her job was too intense and physically demanding for me to ever do. We talked about how a program for older adults might be more to my speed.

 Next we visited with someone who is the volunteer coordinator at SMD, the center my job program is hosted out of. It is a massive local based organization that tries to meet the needs of the disabled community of Manitoba. The lady we interviewed is a very experienced woman with a background in human resources. Basically the lesson learned there was that there are very few organizations that can actually afford to hire someone as a volunteer coordinator. The need for that role still exists in smaller organizations, but the executive director or the board members normally take it on. She got met to tell what I loved in my old job and I talked about being an instructor and setting up programs and she asked why I was looking at being a volunteer coordinator with it's heavy administrative component when I loved the teaching aspects?

Yesterday we had another long visit, again within SMD, but this time with two individuals, the COO of the Fund-raising Department and also the person in charge of Marketing and Lotteries. It was really very interesting to hear about how a large department does things, but nothing was a huge surprise to me. I loved the lady we were talking to. She talked about what a team approach they have there and I would be happy to be on her team anytime and would consider volunteering with them. In terms of pursuing a career in fund-raising I am still not sure that is the best idea. I have done a LOT of fund-raising over the years and know that it wears away at me. There are many aspects that I like very much, but others that I absolutely despise. During our conversation the lady suggested that I might enjoy the diversity of a smaller organization where things are not so compartmentalized. I think she might be on to something.

I am feeling very discouraged right now. I have actually seen a few job postings that were of interest to me but they have all been full time and the reality is that I am only able to handle part time positions. I did learn that I enjoy interviewing people and I am pretty good at it. Not that it is a huge surprise, but it is one more thing I can add to my set of job skills.

Deciding what you want to be when you grow up is hard no matter what age you really are. Figuring out how to actually get that job does not seem very simple either - especially if you are 50, weak on one side and also have balance issues.

Clip art from http://www.clipartsfree.net/

 

No More Barriers

I attended a conference over the past two days called The Disability Health and Wellness Conference: You and your Life.  I look forward to sharing more details very soon but I wanted to share this video immediately. It had an amazing impact on the crowd.  People fell silent as we viewed it.




This video was shared with us by today's Keynote speaker from Barrier Free Manitoba. Manitoba is currently in the process of drafting accessibility rights legislation and today's speaker gave us an inspiring speech about the status of similar political changes around the word and about the waves of change we can expect as our population ages.

The Disability Career Symposium

On May 17th I attended a really interesting type of job fair and career symposium. The Ability Axis Employment Expo is billed as "a celebration of employment and career opportunities for people with disabilities in our community".  There were balloons and other decorations, a space to buy merchandise such as shirts and books and an area to chat. Last year the event brought in over 700 participants and I am sure this year it was attended in even greater numbers.

The concept is that it is a place were employers can have booths and so can a whole lot of non-profit and social service organizations, and government agencies that are involved in supporting disabled consumers in living in the community.  They had seminars going on about job and work related issues. The website has a really good section on how to prepare before attending a job fair that is worth checking out for anyone interested in getting back into the job market.

There was a huge crowd with a variety of ages and issues and frankly it was overcrowded considering the special mobility needs in that space. It is a good thing for the conference showing growth, but it made for a tougher day for me. I had a great deal of difficulty keeping my balance with so many people swirling around me and all the loud sounds of so many people also bothered my ear and my balance. I did a quick walk around the job fair area to get the layout of the place but I felt unable to go back later.  I also learned during the sessions that things like the location I choose to sit is crucial for me to get the most out of these sessions. I need to be in the left side of the room and viewing toward my right. I wound up getting through the maze of people too slowly and got a spot on the right. The room was wider than long and the video screen at the front was to the left of the room, a person signing in the middle, the speaker at a podium to the left and a whole lot of people wiggling in between me and the speaker at the front.  I sat with my eyes closed for a good part of the speeches  in order to try and minimize the nausea.

The two sessions I attended were both wonderful. 

The first seminar featured Denise Bissonnette who is a very lively and encouraging international speaker. She speaks with passion about finding what you love to do as a foundation in your job-hunt.  She has several books out and I bought one that is a workbook for people new to a work place but it is used in pre-employment training sessions. Yes I got her to sign it!! She also has a book of poetry out and I found a YouTube clip of her reading one of her poems. It gives a taste of what vivacious person she is.  Her web page has a useful archive of her free newsletters.

The second session I attended was with Marianne Petrachek, a speaker who talked about the legal issues related to disclosure of disabilities in the employment process and rights and responsibilities of both the employee and the employer. It was very informative and I really learned a lot. I was making a lot of assumptions and now I know the facts about disability employment rights in Manitoba.

I had lunch with two of the ladies I met at the computer class last January who were also attending the event. It was great catching up with how they are doing and hearing about their successes in getting some job experience. We are going to meet up again in a few weeks and see if we can find a few others from the class to have a bit of a "class reunion".

I am intending on going to another two day conference this week called Disability, Health and Wellness Conference: You and Your Life.  There are a few things I will do differently. One major change is that I am taking one of my daughters along to act as a personal aid. I admit that I spent too much time at Ability Axis stuck and unable to get around, and in the end I was too exhausted and nauseated to finish off the day. This time I am admitting that I NEED help. I will also find a way to get away from crowds and have more rests. I will also bring more money so I can buy more books!