A letter about CMT voice problems

Yesterday I received a letter, via snail mail, from a 14-year-old young lady in Liverpool, England. She reads this blog and wanted to tell me just how much it means to her.

Well, thank you, Emma.  Your letter made my day but why not e-mail me at linda@lindacrabtree.com and we can talk anytime.

You mentioned that your mother has vocal cord paralysis like I have. My left vocal cord simply doesn’t budge. My right one moves over to compensate for the loss of it but for years I had a strange double sounding voice.  You say mom is looking for literature on the topic. If you go to my personal website at lindacrabtree.com you’ll see a listing for vocal cord paralysis under CMT Newsletter. Click on it and you’ll see:

Hereditary Motor and Sensory Neuropathy with Diaphragm and Vocal Cord Paresis A synopsis of a journal article written by Peter James Dyck, MD; William H. Litchy, MD; Sharon Mennerath, BS, Thomas D. Bird, MD; Phillip E. Chance, MD; Daniel J. Schaid, PhD and Arnold El Aronson, PhD.

Vocal Cord Paralysis and CMT by Linda Crabtree

Problems in swallowing by Bonnie Pfeiffer, MA, CCC-Sp.

Why we may choke by Erin Chelsea Kelly, speech/language pathologist

In fact I think these titles may even be linked to my site if you click on them here in wordpress.

The article even mentions an operation, I believe, that can be done to help vocal cord paralysis but it isn’t without its problems, so make sure your mom gets all the information needed if she decides to go for it. It’s called an Ishiki Type 1 laryngoplasty and a small wedge of silicone is inserted beside the paralyzed vocal cord to push it over more toward the working one. However, that silicone wedge can work its way out and a person can choke to death if it comes out into your windpipe. I know because mine did work its way out and after two days of knife sharp pain in my throat I choked up the silicone wedge. It had been put in from the outside and it came up from the inside. The morning I choked it up I called the surgeon in Toronto and told him what had happened. His reply was, “Oh, didn’t I tell you? That can happen. You’re lucky it didn’t come out lower in your windpipe, you could have choked to death.”  Great!

So, there has to be a better way than that but there are new procedures developed all the time.

Choke?! I choke so bad, mainly on room temperature water, you’d think I was dying. I know that if I can get even a little air in, I’ll be okay, but it isn’t pleasant, especially in a restaurant. I try to figure out what makes me choke and not do it: Drinking while lying down, talking while chewing, drinking room temperature liquids and sipping soup or liquids taking in lots of air (to cool it) makes me choke.

I’ve also just finished an eight-week course on how to use my voice more efficiently. I’ve learned to use my diaphragm (which is also partially paralyzed) more to speak and not to shout. Shouting really doesn’t help that paralyzed vocal cord and puts stress on the working one. Learn to use your brain instead of your voice. Going to someone and talking directly to them in a normal voice makes more sense than shouting at someone from a distance. The impact is so much more direct. There’s always a way.

Also, you can go online to medline and look for CMT and vocal fold paralysis.  The correct name is vocal fold, I’ve learned. I know a lot of the journal articles will seem like gibberish to you because they are written in medical terminology but if you take your time and work with a medical dictionary (you can usually find a second-hand one in a used book store or use an online medical dictionary), you’ll learn so much.

Knowing and understanding takes away fear and gives you power. You’ll also know how to make better decisions regarding your CMT. You’re not too young to begin really learning about CMT.

Your mom sounds like an inquisitive woman who wants to know, too, so take a page from her book and get together and find out where to look and how to learn about your CMT. There’s a great deal of information out there. All you have to do is look in the right places.

Emma, I look forward to hearing from you. Please put EMMA CMT in the subject line and we can talk more.

Till later…

Accessible Niagara brochures hit the road

We felt like Thelma and Louise, zooming around Niagara in my Toyota Braun Enter van, roof hatch open, windows down, laughing.

What in fact Eileen, my colleague, and I were doing was delivering some of the 40,000 Accessible Niagara brochures I received a week or so ago from the printer.

I can’t walk so I drove…with hand controls. Eileen is in good health so she was the runner/deliverer.  I’d pull up to a hotel or winery front entrance, she’d quick-walk in with bundles of brochures, a covering note attached, and emerge a few minutes later empty-handed and ready to go to the next stop. Only once did she almost get into the wrong van. It was a Cadillac, no less. Good going, Eileen!

The first time we went out we were green. We only did about a dozen places. The second time we finished up all of Niagara Falls. The third time we had it down pat. I made up the delivery slips and planned a route beforehand. We managed 22 drop-offs in an extended afternoon.

As we headed home after a dinner of liver and pearl onions at the Niagara-on-the-Lake Golf Club (it sounds expensive but it isn’t – $34. for two), we felt as if we’d really accomplished something.

In two weeks some 13,500 brochures, (45 boxes) have left our home’s front foyer. That’s as far as my

About 1/2 of second delivery of boxes

husband would carry them and that’s where the rest (about 25 boxes) will stay until we get them out. There are another 60 boxes in storage. They aren’t dated so will be good for next year and we’ve tried to make them as useful as possible. We didn’t list websites because we want people to come back to AccessibleNiagara.com for details but we did put in phone numbers and a key for all manner of things you need to know such as where the accessible washrooms are and what the hotel bedrooms and bathrooms are like… that kind of thing. All stuff that’s important when you travel and can’t walk or move well.

It’s been quite a job and I’ve learned a few things. I‘ll never use the printer I used again. Not enough attention to detail. The first run of 40,000 had to be scrapped. All of the photos were big black blobs.  Not acceptable and very stressful when you’re attempting to get an item out to the public before a certain date. I missed two important deadlines because of the printer’s attitude toward quality control.

I’ll get more funding next time so someone else can do the delivering. I’ll be 71 by then and may not be up to doing fly-by deliveries, although it is fun.  I also didn’t make much money on the project considering I must have spent at least 50 hours on it.  But, I didn’t do it for the money. I did it to show people, all people, what Niagara has to offer. We’re more than the Falls.  And I’d like them to see that anything that is accessible is good for everyone. I can’t say the same for places that aren’t accessible. It’s a good case for the use of universal design. I want people to know that

 

If you’d like a brochure please call 905-945-5444 or 800-263-2988 or e-mail  gateway@tourismniagara.com

 

While delivering, I couldn’t help notice how the tourism area went from almost bare to glowing with visitors from week to week as the weather got warmer. As I mentioned, we’ve just finished Niagara-on-the-Lake, mainly wineries.  There were people everywhere, wine tasting, eating, buying and obviously enjoying. The weather has improved dramatically and that always brings out those ready for a new adventure.

Old Ridgeway RR Station on-site

A couple of weeks ago we visited the Fort Erie Railroad Museum. It’s terrific and a great place to take photos. Here are a few from that visit. It’s just off the Peace Bridge from Buffalo, N.Y.

Till next time – take care of yourself!

Linda

 

 

Architectural detail of old station

 

6218 built in 1942

Birthing a brochure for disabled travelers

On April 11, the funding came through to do an Accessible Niagara brochure. I’d been working on the funding since last October, but wouldn’t you know, it comes in six weeks before they need to be on the racks for the 2011 tourism season. I’m having 50,000 printed.
So, I dove in, and spent 20 days straight working on it. Between Eileen and me, we got it done and it’s now being bounced back and forth between the printer and me. My intention is to have it ready and on the racks, in the hotels, and at the wineries by National Access Awareness Week, May 30 to June 5. A bundle is also going to the People in Motion 2011 show in the Queen Elizabeth Building, Exhibition Place in Toronto, June 3 and 4.
There’s a ton of information in it and I’m looking to show visitors that there’s a great deal more to see in Niagara than the Falls. I think I have more than 170 venues on the brochure and 25 of those are free.
Doing a project like this from scratch is like giving birth to something. You conceive it in your mind, develop and research it, find the funds to make it a reality, do the layout and design and send it off to the printer. A proof comes back and you scour it for errors, change things, and make it better, if you can. Then back it goes to the printer and 50,000 copies are made. If you’ve left in mistakes, you have 50,000 mistakes. There’s no going back. When it is delivered to the storage facility you see a skid of boxes of brochures that would choke a horse. Then you get to work delivering them all. It’s a job, but if it lets people with disabilities see more of Niagara, I’m up for it.
On the more personal side, Ron and I have made a plan to take one day a week this summer and just travel Niagara. I’m looking forward to taking some nice shots for the AccessibleNiagara.com website and spending some quality time with Ron.
Last week we spent Thursday afternoon at Niagara Parks Botanical Garden, which was absolutely beautiful although the trees weren’t all out, and then dinner at The Planet, a round 1950s-style drive-in (they no longer deliver to the car) that has the best hamburgers and fries I’ve ever tasted. The hamburger was so big and juicy I couldn’t pick it up. Ron fed me until we figured out that cutting it up with a knife and eating it with a fork would let us both eat at the same time. I realized that Ron just intuitively picked up the hamburger for me and gave me a bite. It was as normal as eating his own. No hesitancy at all. That’s nice. I guess after 33 years together, it just comes naturally.
Sister Kathie and I visited mom on Mother’s Day.

Dorothy at 96

She actually woke up several times and flashed us some huge smiles. I think she knew us. The look in her eyes said she did. At 96 she’s fading but those eyes still say she’s with us. Love shines through.
Something I read on Lisa Bendell’s 50 Good Deeds blog that I found inspirational.
Life is mostly froth and bubble,

Two things stand like stone,

Kindness in another’s trouble,

Courage in your own. – Adam Lindsay Gordon

It’s spring and the frogs are singing!

To say that I am happy to seeing spring slowly creeping onto the land is an understatement. We had a warm day yesterday, it was 65 F., and I realized just how much the cold does me in.

Somehow I can’t seem to shake the loss of my beloved dog. I think I recovered from the loss of my brother faster. Brother will always be in my heart but I don’t mourn him daily. The dog? I miss him so much. In hear him everywhere. I miss his smell, his feel. I guess I miss the unconditional love more than anything.
There is no chance we’ll have another one. My husband says he simply can’t take on any more. I know the fact that I can’t do much because of my advanced CMT doesn’t help. I’m not sure how I’ll shake this but I eventually will. Life just won’t be as good as it could be.

We’ve visited the Niagara Parks Butterfly Conservatory and there were more butterflies than I’ve ever seen there on previous visits.

Beautiful!

Absolutely gorgeous.

When we were leaving, there was a Witch Hazel tree in bloom at the back of the building. If you didn’t know any different, you’d think it was a frail cousin of the Forsythia but it isn’t. It was so bright and cheerful to see after such a log, cold, snowy winter.

Last Sunday we went for brunch in Chippawa at Betty’s and on the way home drove through a lot of back country. Every time we passed a swampy wooded area a chorus of frog and peeper song filled the van. That, to me, is spring. It’s a glorious thing to hear.

Swampy wetland full of frogs

Thousands of little frogs all croaking to find a mate and get on with the cycle of life.

I’ve painted three new pieces in the last month. I’ve been trying to figure out how to depict a woman in a wheelchair without really drawing a wheelchair because it is freedom to us and we are not “confined” by it.

Ruby Red Socks

Ruby Red Socks sits in her chair and flies toward the heavens. Can you see her?
Bright Spot is just that. A little light for dark corner.

Bright Spot

Ode to Spring is wild colour used in loose abandon.
These are all 12″x12″ done in acrylic on canvas and are displayed and for sale at $200 each amongst many others at the Niagara Artists Centre (NAC) to raise money for their programs.

I enjoy painting. I especially enjoy colour.

 

Talk later.

Have a terrific month. Get out there and breathe.

Hugs,

Linda

Ode to Spring

February was busy and sad

February has always been a rough month for me. Being cold actually hurts and it’s exhausting. My hands and feet are always cold in February unless I’m in bed or wrapped up in an electric blanket on the couch. But, you can’t stay horizontal all day or nothing will get done so it’s up and at ‘em.

We had to put our beloved dog, Val, down early in the month.

Our beautiful Val

It was one of the most difficult things Ron and I have had to do during our 30 years together. Val had been with us for 14 years. He was part of our little family and we loved him dearly. When he went he was blind, deaf, and had a bad skin condition. His quality of life was severely curtailed and he slept all day and night, only rousing to eat as often as possible and roam about the house a bit bouncing off walls while he looked for me. We loved him, he loved us and it has been hard without him. I still tear up when I think about him or look at his picture. A little cedar box containing his ashes sits on our bookshelf and in the spring I’ll put them in the garden where he used to chase squirrels.

I finished an online course on Visitability through the University of Buffalo.
The concept includes:
- An entrance without a step or threshold that is on an accessible path of travel from the street, sidewalk or driveway. An accessible path of travel has no steps, is at least 36 in. wide and is not steeper than 1:20 (5% grade) for walkways or 1:12 for ramps.
- Throughout the ground floor, doorways designed to provide 32 inches clear space and hallways that have at least 36 in. of clear width.
- Basic access to a half bath or full bath on the ground floor. As defined here, basic access simply denotes sufficient depth within the bathroom for a wheelchair to enter, and for its user to close the door behind it. Basic access to a full bath is preferable to a half bath, but is not required.
- Electrical switches and outlets not lower than 18 inches to center, nor higher than 48 inches to center. (This element is included in some, but not all visitability initiatives.)
and, some people add lever handles on doors. Lever handles are easier for everyone. A room on the main floor that can easily be converted into a bedroom is also a plus.
Habitat for Humanity Niagara and the Niagara Centre for Independent Living are interested in furthering the concept in Niagara.

Alison Langley of the Niagara Falls Review wrote a really good article on my AccessibleNiagara.com website and my Access is more than an Open Door DVD. You can read it at: http://www.niagarafallsreview.ca/ArticleDisplay.aspx?archive=true&e=2960279
That article lead to several more Niagara pages being created on other accessible travel sites in New Zealand and the U.K.

I also attended a day long workshop on the Accessibility for Ontarians with Disabilities Act Customer Service Standards and wrote a column for the paper on it that will be published next Saturday. Because I cannot get off a normal toilet I had to come home during the lunch break. This is what stops me from doing a great many things. Don’t know the answer but I’ll likely sort something out. No use of my legs, no push, and extremely weak hands mean I cannot pull myself up using grab bars. No finger strength means I cannot pull up my slacks even if I sit on the side of my scooter and use a urinal. It’s a delicate, frustrating situation that causes social isolation.
Sister and I took in an orchid repotting

Luna

workshop at a local greenhouse where we met Don Davis and his gorgeous parrot, Luna.
The publisher of the newspaper where I worked from 1959-60 and then 1970 to 1982 died at 61 of cancer. Henry Burgoyne was someone I’ll never forget. He was in line for the job of publisher of the paper after his grandfather and father. I first met him when he was only 11 and still in short pants. We worked municipal night election results together in The Standard editorial room in 1959. He loved fast cars and having fun but, most importantly, he was a boss for whom you wanted to do your best. He grew up with us all looking on and I like him a great deal.

Mother is going downhill and we’ve been told she’s lost 10 pounds in the last month. I personally think it’s her way of shutting down whether she’s totally aware of it or not. Not eating is something she can control in a world where everything else is controlled for her. She’ll be 96 in about a month. I’ve written her obituary.

Funding for a big job is due to come through, one way or another, in a week or so and I’m in discussions for even more funding for another huge project I want to do before I’m unable to do anything.

I still haven’t learned to use Dragon Dictate properly. Still typing with the knuckles of my little fingers. Somehow the words come more easily typing my fingers …er knuckles, than they do on my tongue. I was at a meeting last week and said a few things that simply didn’t come out the way they should have. I think much more clearly on the screen.

Snow, snow, snow. We’ve been dumped on several times this month and the world is often softened and quieted by tons of the white stuff.

So, off we go into March. The snow will soon melt away, the ditches and rivers will run high and the sun will shine a little more often; another Canadian January and February behind us.

A winter drive in the country

Sometimes an hour and a half drive in the country can be as good as a week at a spa. When it’s cold and snowy out, I don’t venture forth unless I have to. I hadn’t been out for a week so husband, Ron suggested a little drive in the country since the sun was shining and the temperature around 0C.

Ron was raised on a 100 acre farm in a tiny hamlet called Silverdale just

The very old farmhouse in Silverdale where Ron was raised in the 30s and 40s.

southwest of Vineland which is about ten miles from St. Catharines, ON. It’s a quiet but lovely part of the peninsula featuring farm after farm and beautiful homes tucked into the woods or in small subdivisions that, for the most part, haven’t taken off. There are all kinds of dilapidated fruit and stock barns and also

You an see right through this lovely old barn left to fall down.

many that have been kept up and are still used. There are derelict farmhouses and others that have been renovated into spectacular modern homes. And there are old schools simply left to fall down

The old Rosedene one room schoolhouse built in the 1870s- one door for boys, another for girls.

because the children are now bused to centres where a modern school serves many.
On our drive we saw creeks running like it was spring, and we all know it isn’t. We saw children on toboggans pulled by big brother on an ATV being bumped and rumped over hills and gullies. We saw huddles of beef cattle circling huge piles

Mom and her young one out behind the school.

of hay and horses nuzzling through snow to get at what’s left of the fall grasses.
Several years ago, we frequented an alpaca ranch in Pelham that also had a retail outlet attached to it. As well as breeding alpacas and selling the wool, the owner sold beautiful garments made from alpaca: blankets,

Just a couple of the many alpaca on the ranch in Pelham

mattress covers, you name it, mainly from Peru but some made right here in Ontario.

My alpaca sweater, socks and blanket are the warmest things I own and I’m not allergic to them like I am cashmere or wool.
At the end of our trip we found ourselves at the alpaca ranch and there they were basking in the sun, munching on hay in the snow, totally oblivious of the cold.

Miles and miles of shadows and snow.

Just getting out there where life is a bit slower, where there are great expanses of open field and woodlot and nothing else for miles, where the snow is only touched by the sun and rabbit feet and the hooves of deer, can refresh your spirits as well as your soul. Now I think I’m ready to tackle the week ahead.

Thirty years married and looking forward to my 70s.

It’s the last day of 2010. I can’t say it’s been a bad year all round. No one in our immediate family died. That all happened in 2010 when we lost nine friends and family.

Work-wise, my accessibleNiagara.com website got a good scrubbing and brightening up and the Access is More than an Open Door: Accessible Tourism in Niagara DVD I produced went out to 200 people in Niagara who run tourism venues.

My Access Niagara newspaper column continues and will be going into its 15th year. I also freelance when opportunities present themselves and consulting on Universal Design is also something I enjoy. And, I started this blog and hooked AccessibleNiagara.com up to Facebook. In spite of my reticence, I’m being dragged into the social network.

I have a feeling that 2011 will be one of taking care of myself. I’m committed to 14-16 weeks of voice therapy to keep the one working vocal cord I have left, moving. I’m asking my GP for a referral to a local neurologist to see if the cyst on my spine I read about on my MRI report might be causing my neuropathic pain. Not one doctor I’ve seen about the pain has ever mentioned it.I hate to be sarcastic but I’m wondering if it’s too far down on the page. No one ever seems to have the time to really think about what I’m saying except my cardio-pulmonary specialist who recommended the Wharton Medical Clinic I’m going to for weight control and the speech therapy.

I’ll be 69 in April. If I can get my health somewhat sorted out during 2011, I’m thinking perhaps I can go into my 70s with fairly good health, less weight, maybe less pain and retain my voice while not wearing out what I have left of my hands. With CMT it’s a toss-up. Use one thing to take the pressure off another thing and you lose the one you’re using. Pacing is so very important and the hardest thing for most of us to learn. I’ll know I’ll never learn to pace myself entirely. I enjoy the thrill of working to deadline too much. It makes me feel alive.

My toes, feet and legs don’t move. I can move my legs from the hip; that’s it. My right hand fingers don’t move, both hands are weak and my left vocal cord is paralyzed plus my diaphragm is partially paralyzed. I’ve stopped beating myself up for being tired after working five or six hours. Who wouldn’t be when you have about half the muscle mass of a normal person. And the chronic neuropathic pain I have can be so stressful it’s like living with an ugly little whiney person on your back…. all the time…every day…all day…all night…forever.

Early last year I started taking Cymbalta and for a month the pain was reduced by about half. The only problem was, my pain holiday was accompanied by a lack of urine production, terrible constipation and sweating so bad I was wet all the time. Some holiday! In 2011, I’m committed to finding something that does what Cymbalta does without the side effects, if such a thing exists.

Ron and I are celebrating 30 years of marriage today.

Ron and Linda 30 years ago today

I could walk when we got married. We’d just had a terrible ice storm and the trees glistened and cracked with silver ice as my mother and mother-in-law held me up and we climbed the steps of the police station. The Justice of the Peace had an office on the second floor. Ron met us after parking the car and we all went up in the same elevator they took prisoners down to the cells below.
A short ceremony and a few signatures later and we were man and wife.
We celebrated with my sister, her husband, my mother and mother-in-law at a popular restaurant.

The wedding, reception and everything cost us about $200. A local photographer took a couple of photos before the day and didn’t charge us. I’d known him for years. The rosebuds were also a gift. People at the newspaper where I worked knew we were getting married and threw a small wedding shower for us but between us we had everything we needed. I was 35, he was 40 when we met and three years older when we married. Someday I’ll tell you how we met.
I’ve never had a wedding dress. Never wanted one. I wore grey wool slacks, a silver grey silk blouse and a dark grey velvet jacket. Pink rosebuds on my lapel were my flowers. Ron wore a carnation boutonniere and his best tan corduroy jacket with wool slacks. He always looked terrific so I had no worries that he’d show up in jeans. He doesn’t own jeans. He doesn’t own a t-shirt.

This was Ron’s first time married and my second. It hasn’t all been easy by any means. I could walk and work and keep house when we married. Throughout the last 30 years I’ve lost the ability to walk and use my hands to do housework and cook. Ron has taken it all on as I’ve lost it. He complains sometimes, yes. But that’s pretty natural. Anyone would. The thing is, he does it, and the house looks great, the garden and lawns are looked after, the bills are all paid, the dog is clean and as happy as a blind/deaf 15-year-old poodle gets and we’re coping pretty well. We also eat well and he’s learned to cook simple and nutritious meals. The weight control plan I’m on has him reading labels more than ever. At Christmas someone asked us if we have help at home. We said no. The reply was: Why not? Ron would rather do it himself than have strangers all over our personal stuff on a regular basis.

How do I feel about it? Not good sometimes. I really wish I could get in the kitchen and cook up a storm like I used to. I drop everything and my hands are so weak I can’t open or chop anything. I’d even like to do a couple of loads of washing and make the beds but I’m way beyond that. I can barely stand up to do dishes but I enjoy trying. The thing is: I enjoy work. Enjoy connecting with people. Always have. That’s why I pour myself into the internet and my writing.

When I see Ron played out from doing physical work like raking leaves or washing windows, I would give anything to be able to get out there to help him. When he falls asleep watching the news or his favorite TV show, I know why. At 73, he does it all. Would he be lonely without me? I’m not so sure. A 40 year-old bachelor had to be pretty comfortable with himself but he was looking and he found me. I don’t know if he regrets it or not but he’s still here and I think that speaks volumes. We don’t spend time analyzing our marriage, we’re too busy living it.

Someday, we’ll likely have to sell the house and move to a senior’s residence where there are no gardens to tend, no grass to cut or snow to shovel, no windows to wash and no meals to cook but until that time, we’ll just keep truckin’ together and enjoying life as best we can.
May your 2011 be happy, healthy and full of love.
Talk soon.
Linda

Merry Christmas!

Niagara Parks Floral Showhouse

To wish you a Merry Christmas, I’m going to post some photos Ron and I took at the Niagara Parks Floral Showhouse last Sunday. This is a beautiful oasis from the cold featuring, at Christmas, poinsettias, cyclamen, azaleas and Christmas cactus plus free flying tropical birds. There are two sides to the greenhouse: one features seasonal themed shows and the other holds a myriad of tropical plants including orchids, cactus, bird of paradise and flowering tropical vines. The greenhouse is open daily except for Christmas Day and it is free, however, at times there is paid parking enforced.

A load of gifts in a vintage sleigh surrounded by Christmas flowers

When the snow flies, as it did the day we visited the greenhouse, the flowers and warmth are a welcome respite from the cold.

This little snowfrosted fellow lives on the fountain outside in the cold.

There are orchids everywhere in the rotunda and tropical side of the greenhouse which is toasty warm all year long.

Beautiful orchids everywhere

A finch on Christmas cactus.

Tropical birds flit from greenhouse to greenhouse up high where visitors cannot touch them but still low enough to enjoy.

We noticed the odd sparrow taking a vacation from the icy mist and cold outside in the warmth of the sheltered greenhouses.

The reason for the season for many of us is the  birth of Jesus Christ in Bethlehem. A beautiful, almost life-size creche greets you as you walk into the Floral Showhouse. Towering over the creche is palms and other tropical trees and the entire scene is one of  peace and calm.

My wish for you is love, happiness and health in 2011. May the message that family and love pretty well trumps everything else stay with you throughout the year.

 

The reason for the season

MERRY CHRISTMAS!

CMT and voice problems

Night falls before 5 p.m. It’s the shortest day of the year. From here on the days get longer a few seconds at a time and winter winds its way through our lives and minds once again.
We’ve already experienced a great deal of cold here in Southern Ontario and the world has been white for quite awhile now.

This weather-warrior lives just outside my kitchen window

Yesterday I drove my scooter from the back of a huge parking lot to the grocery store in snow made up of clumps of big fluffy flakes. It always amuses me when moviemakers use fake snow that stays on coats and hats way longer than it should. Snow melts…fast… once you’re indoors.
Yesterday morning I received a call saying that there was a cancellation at the Hotel Dieu/Shaver Voice Program’s Assessment Clinic. I jumped at the chance to get the ball rolling. The reason behind my thinking is that If I’m to take to using MacSpeech fulltime I want to make sure that using my voice much, much more than I normally do, won’t lead to my losing my ability to speak. With CMT, you use it or overuse it, and you can lose it. I’ve already had problems with my voice and had a wedge put in to make the vocal folds work more efficiently. That wedge was rejected by my body in 1996 and I’ve been able to speak with a fairly normal voice ever since but the thought of not being able to speak again is always with me.
After several tests including a videostroboscopy that takes a small video of your vocal folds in vivid living color and full action, I learned that my hearing is just fine and my left vocal cord is paralyzed. My right vocal cord is compensating by moving over to do its work. It’s tricky to explain but it’s the same problem I had way back in the 90s, just not as pronounced.
The upshot is 14-16 weeks of group vocal therapy to hopefully strengthen the cord and learn how to speak more efficiently so my vocal cords do what they need to do and leave the right one well and not make the left one worse. The paralyzed one could bow more than it already is and that means even more air getting through when they are supposed to be closed. That explains why I sometimes choke violently on something as simple as body-temperature water. My tongue can’t tell it is there and it runs down my throat to my supposedly closed vocal cords and it leaks through the crack into my windpipe. Of course I choke as if I’m going to die right there on the spot. My windpipe has water in it. I will learn to be more careful with what I drink and learn to swallow deliberately. Sipping a hot beverage and letting air flow in with the beverage to cool it is also a no-no. Your windpipe is partly open when you do this and the chances of choking are greatly increased. I can even choke on my own saliva if I’m having a bad day.
Ah, one is always learning when you have this crazy disease and, it seems, there’s rarely a dull moment.
I’ve been watching an a ccapella sing-off on television. I just love a ccapella singing. No instruments, just the human voice, and what can be done with this amazing instrument we’ve been given. I’d hate to lose mine.
Catch you before Christmas.

Someone has a sense of humor

A rewarding November…so far.

All the leaves are gone

A singular crow caws through the bare tree-lined alley that is our street. It’s 7:43 in the morning and I’m waiting for the nurse to come from the lab to take a fasting blood sample. I’ve been awake since 5 and Ron woke up around 3 when a smashing great thunderstorm passed through the Niagara peninsula.

November has been full of events and rewarding work. A couple of things I can think of are the mailing of a kit of information regarding my Ontario Trillium Foundation grant. Two hundred envelopes with a DVD I produced called Access is More than an Open Door: Accessible Tourism on Niagara, a list of basics to make your hotel or lodging accessible, two booklets on the Access for Ontarians with Disabilities Act and our Customer Service Standards, plus a letter from me, went out courtesy of The Niagara Parks Commission. They had promised to help with my project, the one that saw Eileen and me work to update the AccessibleNiagara.com website for 22 months, and they did.. Their help was wonderful because I was pretty well burned out after almost 2 years of working on the site.

I knew going in that I was asking for a lot more pain. Doing computer work uses a side of my brain that let’s me feel pain. Creative writing, painting or even reading a book or newspaper doesn’t. My hands also got a lot worse during that time. My right has about 15 per cent use and my left about 50 per cent. I’m also slowly developing wrist drop. To be totally honest, I don’t think I’ll ever take on another project like that again. Both Eileen and I worked long hours but we’re proud of the work we did and the site looks really good.

Being an optimist, I know hard work like this always brings something good and I was able to use the DVD as the opener for a small presentation I did to our mayor, city planner, city engineer and economic and tourism development officer who can change things at the City of St. Catharines.
The story behind the presentation goes like this: Eight years ago an advocate friend in New York City who has the same Charcot-Marie-Tooth disease as me, sent me some literature on a campaign they had launched

The ornate top of a vintage building on St. Paul Street, St. Catharines, Ontario, Canada

to try to get rid of one step into commercial public buildings. The campaign was fairly successful and I’ve never forgotten it. I decided it was time to do something as our century old downtown area is soon to have a spanking new performing arts centre in it and the Brock University School of performing and fine arts will also be located just below the embankment that is the main street. St. Catharines was a canal town way back and one of the old canals ran right through what is now the back of the downtown area. The main street, St. Paul St., was an old winding Indian trail and all the old buildings wind with it and the half on the north side are all built with their backsides two or three stories down the hill towards what was the old canal so the barges using the canal could deliver wares directly to the stores.

My sister, Kathie, and I spent a blustery cold afternoon downtown several weeks ago taking photos and measuring steps. I’d say between 45 and 50% of the entrances have a step of at least 3” which makes them impossible to get into if you’re on a scooter or using a wheelchair.
The meeting went well, I thought, and Diana Lecinski, the co-ordinator for the Mayor’s Advisory Committee on Accessibility for St. Catharines will be working with me to get what we

One step into dress shop makes it inaccessible.

need to try to move this along. The committee’s mandate is municipal buildings and their accessibility but we need to make the downtown area accessible as improvements are being made. The City is offering Community Improvement grants to people who want to improve the facade of their building. The grant is not attached to access. It should be. We’re working on it.

A month or two ago I talked to my breathing specialist about my weight and he suggested a weight loss program, the Wharton Medical Clinic, for people who have at least one co-morbidity factor. I don’t move much and I have CMT and asthma. You also have to have a BMI over 27 I believe. Mine is 29. I’m not classed as obese but overweight.

Last week my sister drove me over to Burlington, about 60 miles from here, for my initial two hour visit. They do tests, thus the blood test this morning, and you are counting calories, carbs, etc. It’s not going to be easy because I don’t move much but I have to give it a try. I‘d like to go into my 70s with less weight on my stomach and behind and less fat around my internal organs. And, my shoulders are starting to give out trying to lift 169 pounds about 20 times a day. The clinic is funded by the Ontario Health Insurance Program (OHIP) so I don’t have to pay. A gift like that shouldn’t be ignored. I’m committed to making it work the best way it can for me. It’ll likely take a year to lose 20 pounds but that’s okay. Food isn’t as important as my health at this stage of the game. The irony is: I have to eat at least five or six times a day now when I used to eat only twice. Eating less but more often means I’m hungry when I never was and I’m also a little warmer. And, I seem to be always eating. But, I feel that I owe it to myself to do the responsible thing and lose the weight. Having CMT isn’t going to get any easier as I get older and I’d like to get older.

Silver-tongued Snow Suckers, acrylic on canvas, triptych (3 canvases), 12"x36"

A couple of weeks ago I finished a painting, Silver-tongued Snow Suckers, or Sippers if you want to sound a little more delicate. It is another triptych, three 12”x12” canvasses painted to look as one but they can be hung separately. It is just a fantasy but it was fun. It hung in the last St. Catharines Art Association show with the other two triptychs I’ve done. I’m painting what I like to do not what I think someone else will like. It has to me for me now. If someone like it, that’s great. They are all for sale but they also look great in my meeting room.
Finally, I found some lovely phalaenopsis orchids for sale at Walmart last week for only $11.98. That’s really cheap and they were fresh and happy

Isn't she lovely?

and most had a lot of buds. I wanted to buy them all because I know that being a plant at Walmart is a tough job. If you’re watered, you’re lucky. Usually you just die if no one takes you home. The trouble with rescuing plants is that it encourages the sellers to buy more and abuse those as well. I chose one gorgeous mauve one that looks terrific with my others. I now have 18 and six are in spike, one in bloom. It won’t be long before my orchid shelf is a riot of gorgeous color…and it’ll stay that way until spring.

It has been an interesting month and it’s not over yet. I’m off to the One of a Kind Art and Craft Show in Toronto on Thursday with a painter friend. There are 800 artists and craftsmen exhibiting there. She’ll be walking all day but it’ll be exciting and fun. How I wish I could flip down a little seat on the back of my scooter and let my friends take a load off their feet when they get tired.

It’s noon, the sun is shining, the blood sample has been taken, I’ve answered several e-mails wanting help and talked to a woman who wanted to find a wheelchair accessible van driver that would take her brother who’s had a stroke, can’t speak and uses a wheelchair, for a drive around the city. Now there’s a business for someone who could pick up a second-hand wheelchair van.

Ah, give it a rest Crabtree! Time to eat again.
Bye for now.
Linda