Do It Myself Blog – Glenda Watson Hyatt

A few weeks ago, I purchased Dr. Christiane Northrup’s The Wisdom of Menopause, in preparation for “the change of life”. Flipping through the list of possible the symptoms, I came across:

• Hot flashes. If they occur during the winter months, that will be one way to save on the hydro bill!
• Insomnia. Needing to get up two or three times a night to pee doesn’t make for a restful and restorative night’s sleep.
• Forgetfulness. Like, while making my breakfast, I reach in the dishwasher for a clean knife and put it beside the one I pulled out a moment ago? Doh! Is that forgetfulness or the result of being dead tired because I was up three times the night before?
• Brain changes. Whoa! What?

Let’s read that again!

Our brain actually begin to change at perimenopause. Like the rising heat in our bodies, our brains also become fired up! Sparked by the hormonal changes that are typical during the menopausal transition, a switch goes on that signals changes in our temporal lobes, the brain region associated with enhanced intuition.… There is ample scientific evidence of the brain changes that begins to take place at perimenopause. (from p. 38)

For someone with cerebral palsy (i.e. brain damage), this is not  comforting news. I am still figuring out how my cerebral palsy works. I just discovered wearing a scarf on cold days reduces my gagging. All those early morning university classes, I thought that gaggy feeling was due to eating breakfast before a half-decent hour. I now discover it was probably because my neck and throat weren’t cozy warm. Now some hormones are going to mess up what I do know about handling my cp? Great!

And, for someone who had rare temporal lobe seizures as a young child – I’d have crying and screaming episodes during the night without waking up and ended up on phenobarbitol for several years, which is likely another contributing factor to my osteoporosis (but that is another story) – the fact that the temporal lobe is specifically mentioned is even less comforting. Will these temporal lobe changes reignite my seizures? I’d like to know what I could be in for.

So I did what most people would do as the starting point…I googled it. Googling cerebral palsy AND menopause AND temporal lobe resulted in no useful information; not even close. Broadening the search to cerebral palsy AND menopause resulted in vague, general information; nothing that was particularly useful and insightful without paying for a medical Journal subscription.

If Google doesn’t provide, at least, the starting point, what is a perimenopausal woman with cerebral palsy to do?

Many moons ago, my only roles were daughter, sister, friend and student. With my particular cerebral palsy, every task in daily life takes extra effort and energy, and my pool of energy is finite. When I use energy in one task,  I have less for the next one. In fact, my speech therapist disliked when physio was scheduled first. I always arrived to her therapy room with my energy zapped.

In high school, I didn’t take a full course load so that I could keep up with the work load. Grades 11 and 12 took me three years to complete – something I wasn’t thrilled about, but it was the only way I could keep up without being completely drained and while still maintaining decent grades. That 8.75 hours for the Algebra 12 provincial and scholarship exams was brutal!Summers were for recovering and relaxing.

Next came university while living on campus, alone. For the most part, I received only four hours of homemaking assistance per week. The cooking, daily cleaning and paying bills became my responsibility, as well as being a student. Yet I wasn’t given any extra energy. Semester breaks were spent sleeping and vegging. By taking one or two courses per semester, including summer semesters, I completed my Bachelors of Arts in seven years, barely sane.

Since then, I have added the roles of wife, homeowner, aunt, in-law, author, book promoter, blogger, solopreneur, volunteer treasurer, mentor and countless other roles that escape me at the moment. Yet I still working with that same finite pool of energy. That line about exercising creates energy is pure bunk!

Several times in recent years I have felt that I was drowning, that I couldn’t keep up, that no matter how late Into the night I worked, it wasn’t enough.

Last week I was hitting that point again. Inhaling my two squares of dark chocolate was becoming earlier and earlier in the afternoon, and even that wasn’t doing the trick. I was tired and completely drained. The mere thought of attending the day and a half long Board meeting, for which I’m the Treasurer, brought on a nap!

The next three months are extremely full and busy (for my energy levels) and I cannot get sick now, which tends to happened when I am over tired. After talking with Mom and my friend, and tormenting myself for a few days with indecision, I decided to submit my Treasurer’s report and regrets via email, and I bailed on the Board meeting!

I thought I would spend the weekend feeling guilty for not honoring my volunteer commitment. But, instead, I felt freed!

I went offline from Friday afternoon until mid-afternoon today. No emailing, no blogging, no tweeting, no googling for three days!

Conquering Mount Laundry and finishing reading February’s issue of O Magazine in February were my accomplishments this weekend. And, that was enough for me! Reading in bed during the day felt so luxurious.

I realized that I could spend 24/7 at my computer, writing, networking, strategizing, mentoring and still not get done everything I want to, ought to and need to. But, really, is that a well-balanced and meaningful life? Is that the most efficient use of my finite energy?

I realized that the ebook on web accessibility for bloggers may not be ready to launch at SOBCon 09 – business school for bloggers in May in Chicago. Although that would be disappointing, it wouldn’t be the end of the world. I would survive!

I realized that there are other things I would like to do that aren’t done at the computer. My spider plant is finally having babies. I’d like to pot them and then macreme a hanging pot holder for my mother-in-law for Christmas. I haven’t macremed in years! I’d like to spend time with my local friends. I’d like to go on outings with my aunt now that she has electric scooter and is independently mobile again.

I’d like to have a part of my life that is lived away from my computer. I’d like to have a life where I don’t feel like I am constantly struggling to keep up.

For now, I realize I am tired. I am going to publish this post and go to bed. Everything else can wait until tomorrow. G’night and sweet dreams!

Last Thursday, Darrell and I finally set up our Registered Disability Savings Plans (RDSP) at the Royal Bank of Canada (RBC) – the second Canadian financial institution offering RDSPs.

We were less than impressed with the RBC’s financial guy. Had time been on our side, we would have waited a while until bank staff was more familiar with this product. And, maybe by then our primary financial institution VanCity would have been offering RDSPs.

But, because March 2, 2009, is the deadline for 2008 contributions and because Darrell had turned 49 – the last eligible year for the federal government’s matching funds the Canada Disability Savings Grant and the Canada Disability Savings Bond, we didn’t have the luxury of waiting.

We scraped together what cash we could without leaving ourselves too short. Then we were kicked in the gut when the guy said it wasn’t enough for the minimum for a Guaranteed Interest Certificate (GIC) or mutual funds; our only choice was a savings account at 0.1%. Are you serious? 0.1%?! What is the frigging point?

We need to wait until we’ve saved $1000 to buy a GIC at a slightly higher interest rate. I’m hoping the federal money will speed up reaching that goal.

After recovering from that kick, we asked what we thought was a fairly straightforward question: what happens to the RDSP if the one of us should die before the funds are completely withdrawn. We thought the guy’s head was going to explode! He had to call yet another colleague.

Unlike Registered Retirement Saving Plans where you can name a beneficiary, we need to do that in our wills. (Add write wills to our never-ending to-do list.)

Apparently, if the will is carried out within the first year after the death, then the beneficiary (named in the will) receives the full amount left in the fund. Otherwise, the federal government claws back the amount it contributed. Huh? (Checking the Canadian Revenue Agency information myself, it appears the federal money must be repaid.)

As for how much we can withdraw starting at age 60, we don’t know. The guy isn’t permitted to discuss that – “the formula is too complicated”. We would need talk to someone in the government.  Okay. Next question.

According to the RBC RDSP expert, the money from the federal government should be in our account within a few weeks. As for the British Columbia government’s incentive, he didn’t have a clue. He hadn’t heard about it. I was tempted to suggest that he sign up for the RDSP blog updates!

When it came time to depart with our precious cash, he said he couldn’t take it. What?? We are sitting in a bank’s office with umpteen measures of security and he can’t take our cash? Its even real cash, not our baggies of pennies. Are we on candid camera? We had to go to the teller to hand over our money.

We left the Royal Bank not knowing whether we had done the right thing, financially. Would we have been better off to put that money on our credit cards, on our mortgage, or in ING Direct at 2.3%. We don’t know.

Two weeks ago, David Wilcox kindly invited me to present at AccessCamp San Antonio – a discussion-based "unconference" on accessibility and user experience. His initial thought was to have me present via video through the internet calling software Skype.

The Challenge

Because of my speech impairment, video would not be an effective way for me to present. I needed a way to share my PowerPoint presentation, with audio, with the group located in San Antonio.

Also, because this event was on accessibility, I needed my presentation to be ultra accessible. I needed a way to caption the presentation for those participants who were Deaf and hard of hearing. A transcript would be provided for those who were deaf-blind.

The Result

With some mashing of technology and a few late nights, my husband and I found a way to share the PowerPoint presentation running on my computer, complete with audio and captions (yes!), using Skype and the free desktop sharing application Mikogo.

Donald offered this comment during the Q&A session on Skype, “your presentation was hard core, in the contra on sega genesis kind of way.” (I think that is good?!)

On Twitter, Jennifer Navarrete tweeted:

With minimal technical glitches, the presentation was a success!

The Implications

I can now offer live online presentations and webinars! Woohoo!

First, San Antonio, then…?! The possibilities are endless.

A couple of weeks ago, an Adelphi University student Tanya, who is studying to be a special education teacher, stopped by Do It Myself Blog and asked a few questions. Eager to influence special ed teachers while they are young, I offer the following responses.

What accommodations do you have make to minimize or eliminate your disability?

With my cerebral palsy, accommodations are more to work with or to work around my disability and to enhance my abilities, rather than to minimize or eliminate my disability.

I accommodate my disability In numerous ways, in nearly every aspect of my life, oftentimes without even thinking about it. I have several ways to accommodate my speech impairment, technology compensates for my slow typing speed, and an electric scooter gives me mobility

How do you feel about person first versus condition first terminology?

I prefer placing the person first, before the disability; hence, I use terms like people with disabilities, solopreneur with cerebral palsy, and business man who is sight impaired. This way the emphasis is on the individual rather than on the disability.

However, I feel there are disabled people in which their personhood or sense of being is broken or damaged. In my view, disabled people are different from people with disabilities. Disabled people may or may not have a disability per se.

Is there a positive aspect to your disability?

A positive aspect to my cerebral palsy? That really depends upon the day!

But seriously, without knowing the type of person I would have been had I not had a disability, I think my cerebral palsy has magnified my determination, persistence and creativity. Having cp has taught me to be open and accepting of differences and to try to accommodate those differences. It has taught me to flexible and to find possible solutions. I am continually learning patience and understanding.

Would you eliminate or cure your disability if you could?

Until recently, I viewed cerebral palsy similar to severing an arm: the brain is damaged,  it could not be repaired fully. I have never wished for or dreamed of completely eliminating cerebral palsy. I have, however, imagined what it might be like to have clear speech and what all I might accomplish if my speech was clearly understood.

Now, with all of the advances in science and technology, I am not so sure that a cure for cerebral palsy won’t be possible in the future; or, a way to minimize the effects of cerebral palsy.

As for whether I would take the pill or undergo the treatment to cure my cp, I honestly do not know. For the most part, I enjoy my life and am able to do much of what I would like to. Why would I want to change that? But, depending upon what was involved, I would opt for clear speech in a heartbreak!

For the young ones, a cure for cerebral palsy would be unbelievable. Imagine that human potential that could be unlocked!

For more insights on living life with cereal palsy, check out the interview I did with a Masters student in Applied Disability Studies. There was a follow-up interview too. 

Feel free to contribute to Tanya’s education by responding to her questions in a comment below or by responding on your blog and linking back to this post.