Welcome to CMT and Me.

Linda

I’ve lived with Charcot-Marie-Tooth disease for almost 70 years and I’ve got a lot to say. Won’t you come join me? I ran CMT International for 18 years. I have a ton of information from the 103 CMT Newsletters we published during those years and much of it which is on lindacrabtree.com but this blog will feature CMT as I live it. Please look below for regular posts.

My maiden voyage on medical marijuana a rough ride

Just before Christmas I decided to try the medical marijuana butter I’d been saving in the fridge. It was all legal and I was hurting.
Rather than write about it here, I’ll send you to the local paper and my latest Access Niagara column. I wrote about it there and the feedback has been enlightening. My next column will likely be about the feedback.
To see how it went go to: http://www.stcatharinesstandard.ca/ArticleDisplay.aspx?e=3462209
I’d love to hear your thoughts on it.

A KOBO is a neat Christmas gift idea for CMTers

About a month ago I was sitting in my doctor’s office waiting for them to call me and I struck up a conversation with the woman next to me who was reading an electronic book. She showed me some of its features and let me hold it. It was surprisingly light. I thought it was a terrific idea and followed the ads on TV. I even priced them out at Best Buy but they were very expensive and not what she had. Hers was a KOBO Reader.

I don’t use 95 % of the gadgets on anything electronic I buy so why pay for stuff I’ll never use. I don’t need my cellphone to take pictures. I have a lovely Nikon for that. It gets ridiculous after awhile. I wanted a reader for reading, nothing else.

My CMT hands are very weak and I have trouble holding a book much less turning pages. Ron bought me a KOBO Reader for Christmas and gave it me to me early so I could load it. I can’t tell you how much I love it.
Some of the good things I’ve found so far are:
It is light, only 8 oz.
You can pop it your purse and read it somewhere where there are no magazines or books like a doctor’s office.
You van load up to 10,000 pages, I think it is. Tons, anyway.
You can transfer read books to your computer and have more room on your KOBO.
You can prop it up on a pillow if you like to read lying down like I do.
You simply turn a page by sliding your finger tip or knuckle or the stylus over the screen.
You can keep your hands covered and warm while reading.
The back is sort of nonslip so it doesn’t slip off your lap or pillow or wherever.
You can enlarge the print and change type face to suit yourself. You can bookmark a page and turn it off and when you go back in your page is right there.
One charge lasts 2 weeks or longer.
You load it and charge it through your computer.
You can pop it n your scooter basket or wheelchair bag and have reading material with you always. I hate to be at lose ends. I’m reading The Paris Wife by Paula McLain and feel I’m right there with her. TV is good but my imagination is so much better.
It costs just above $100.
KOBO gives you a 20% off coupon for your first book.
The only drawback was:
it wasn’t as easy to startup because my main computer is a Mac but I kept at it and the people at Coles Books at Pen Centre in St. Catharines where I bought it were amazingly helpful. They not only demonstrated it but let me try it before I bought it and then when I needed help getting it started, they were there to lead me through it. Kudos to Coles for my KOBO!
Other gift items I’d suggest are
The PediPocket nail kit and Cozysoles heat-up slippers.
both are on Google.
Any interesting gifts you’d suggest for your fellow CMTer?

Short breaks from pain – a new drug

To say I respect and try to avoid the use of drugs is an understatement. I’ve got a sleeping aid prescribed in 2001 that I still haven’t finished. I only take it when things are so bad I’m crying for lack of sleep. I save it, I cherish it because it works when nothing else does. It’s Imovane (Zopiclone) and half a 7.5 mg tablet ill put me into Neverland in 20 minutes no matter what’s going on in my life.
When a new acquaintance told me about a medication she was taking for pain she has from a terrible car accident resulting in many broken bones and operations following it, my ears pricked up. She liked it and said it really helped.
It’s called Targin and when I asked my GP about it, he’d never heard of it. So, he called the pharmacist downstairs from his office and got clued in. Turns out it’s a combination of two active ingredients: oxycodone and naloxone. Oxycodone belongs to the group of medications known as opioid analgesics (narcotic pain relievers). It decreases pain by working on the central nervous system. Naloxone belongs to a group of medications known as opiate antagonists and is used to lessen the constipation caused by oxycodone. This combination is used to treat moderate to severe pain in adults who require round the clock pain relief for several days or more. Hey, it’s been 20 some years.
And, you’re supposed to take it every 12 hours. I can’t do this because it really flattens me physically and dulls my spirit. But, for about 12 hours, it gives me a nice warm buzz and I get a short vacation from most of my neck, shoulder, rib and back muscle pain and about 50% reduction of the burning nerve pain across my buttocks and down the backs of both legs.

Pain - Fire burns in my skin/ Day and night/ No respite/ The red coals burn into my soul/ Why do I have to live this way?

It takes 12 more hours to wear off for me, so I can’t take it if I’m going to drive the next day or do anything that takes concentration or is really difficult. I simply can’t think too well when using it. I make mistakes and have to concentrate extra hard to make sure I don’t mess up transferring or doing something physical.
So far it hasn’t made me constipated but I’ve taken two stool softeners every night for years and now Metamucil every day to keep my aging CMT intestines moving along. The stool softeners were prescribed by my terrific lady gynecologist. She has patients who are pregnant and use a wheelchair. When you don’t walk it’s difficult to stay regular. When you are pregnant, constipation can be part of it all. Stool softeners make sense for aging CMT people like me who can’t walk and are often constipated.
For about 12 hours after the twelve hours I was in my buzz, I have profuse sweating, a dull headache and my pain is back. I can work but not well. After that period, I’m back to normal and so is my pain. So, it’s a tossup, really. I get 12 hours of relatively pain free time to luxuriate in my warm glow and then 12 or more hours of withdrawal when it’s wearing off.
The good thing about it is that it’s something I can take when the pain has me worn down to a nub and I want to screw myself up into the heavens and leave my earthly bones behind. The bad thing is that I pay for those 12 hours of bliss with another 12 hours of sweaty grogginess and my pain is back. Are those 12 good hours worth it? Sometimes.
I’ve not given up exploring relief for pain. I sent away for my license to possess medical cannabis in September. I got it Dec. 2. I’m never going to smoke it but I am going to see if I can find a strain that will give me that warm pain-free buzz without the withdrawal symptoms. And, it’s not cheap but is still less expensive than the $100 to fill the Targin script and will likely last longer because I can work out myself how much I can take at any one time so I don’t get so groggy.
Cannabis had been vilified unjustly, I think. The “war on drugs” has tarred everything with one brush including some natural plants that can truly help people with a variety of medical concerns. If it helps anyone in pain, it’s a good thing in my books. As far as it being a gateway drug; it’s easier to get opoids than it is marjuana…from a doctor.
I respect my general practitioner. He has a tough job and no one can know everything. He will gladly prescribe addictive narcotics for me but when asked if he would sign for my marihuana possession license he said he wasn’t comfortable with that. Does that make sense? I guess then he’s comfortable with me being in pain, addicted and experiencing withdrawal trying to get even 12 hours of relief living on narcotics. To date, medical science hasn’t done such a good job as far as my pain is concerned. Let’s see what Mother Nature can do.
Stay tuned. My marijuana cookies and butter is on its way.

CMT2, mitochondria and diet

If you have been diagnosed with CMT2 or CMT2A-2, as I have, you’ll likely know that it affects the mitochondria: the energy producers in the cell. Without properly functioning mitochondria we can experience all manner of health problems including fatigue, eye diseases, nerve degeneration, muscle loss, inability to lose weight, etc. Just look at your CMT2 body and consider how you function and you’ll see what I mean.
I’ve been looking into mitochondria for myself because I figure no one else is going to tell us about it. I’ve found a good online forum Low Carb for You – discussing the science behind a low carb diet, that discusses a whole raft of good things including mitochondria, but it’s fairly scientific and I don’t understand it all so I went further in my search to learn about mitochondria and found an excellent video, Minding your Mitochondria, that talks about supplements, diet and mitochondria.
My conclusion, for now, and I haven’t stopped searching and reading, but have other work to do, is that we need to make sure we’re getting B1, B9, B12, Omega 3 fatty acids, iodine, sulfur and anti-oxidants. We can take these via supplements but I think it’s so much nicer to eat our vitamins. It also suggests B6 but since it isn’t something we should push I’m thinking don’t take it as a supplement but get what you need from your diet.
I’m convinced that what we ingest makes one huge difference in how we feel and how well our body operates. That sounds so simplistic and it is. It is simple common sense. But it isn’t so common, it seems. Food is food, right? Not really.
A couple of months ago I watched Mike Rowe on the Discovery Channel’s show called Dirty Jobs have a tube put down his nose into his stomach so we could watch what went on during digestion. I think it changed my life.
Now, every time I eat something, I visualize it going into my gut, being slowly made to syrupy goo by my stomach acids and then absorbed into my system through my stomach lining and intestines. It hit home there and then as I watched the acids working on the food that it really does matter what you eat. I saw the direct link in vivid, living, high definition color on my 40-inch flat screen. Very much simplified: from there the molecules go into my cells and in my cells are the mitochondria that keep me going. Those crazy little three minutes on a TV show really made me think twice about what I eat.
I also found an excellent video of a presentation, Minding your Mitochondria, by Dr. Terry Wahls who has multiple sclerosis (MS). After years of decline and trying everything modern medicine had to offer, she was convinced she could help herself by eating the vitamins and minerals the hunter/gatherers did in ancient times. These people were healthy. Our modern diet is full of nonfoods, lacks essential vitamins and nutrients and can’t keep us going especially if there is an ongoing disease process involved.
While she still has MS she is back on her feet after many years of decline.
I don’t think I can eat as much as she has suggested, but I’m going to try.
Go to http://TEDxtalks.ted.com/video/TEDxIowaCity-Dr-Terry-Wahls-Min
It certainly can’t hurt and I’m thinking it is a good diet for all of us with CMT. Good luck.
p.s. – can anyone tell me how to make kale taste good?

The last of my beautiful roses - picked in December

Till next time,
Cheers
Linda C.

CMT and contemplating the inevitable

My dear husband, Ron, 74, experienced a major plumbing malfunction a couple of weekends ago.

Ron heading down the trail

I know, I know, that’s kind of a private topic. But when he’s down and out, not only does it affect him, but my entire life changes.
Ron does so much for me, and around the house, that it’s a total mind shift when he’s not able. I feel as if I must move into “do” mode and I don’t do “do” mode very well.
Sure, I have a 25 point to-do list stuck here on my computer most weeks but those are things I create and do online. Physical housework is an entirely different thing.
I haven’t cooked a meal in years. My CMT hands are so weak I simply drop everything. I can’t hold a knife to cut anything and have no grip or pinch so I can’t open things. I can work the can opener most of the time but holding the can is something else. Thankfully, neither of us were eating much, we were so upset, but there comes a time when you have to eat and, thankfully, my thoughtful sister, Kathie, picked up some Swiss Chalet chicken and a good friend came to the rescue with some home-made lasagna.
And, you should see me try to make a bed. It goes something like this: lean over and try to pull the comforter forward with both wrists, fall over, grab scooter basket behind me to pull myself up and then lean over again. Repeat until bed is in some semblance of order.
I used to make my bed before I got out of it. It is almost possible if you figure it out: straighten everything nicely before you slip out and then just flip the comforter up to finish. I’ll fall back on that when needed from now on. Changing the sheets is something I simply can’t do. Thankfully it doesn’t need doing more than once every two weeks. We’d need hired help for that if Ron couldn’t do it.
Ron asked Kathie to drive him to the hospital (after she’d already made two trips to the pharmacy for us in the late evening) when the pain and pressure got so bad he thought his bladder would burst. Why didn’t I drive him? I have no way of getting in the house after arriving home. I can transfer to my indoor scooter in the carport but only if the car was backed out and the outdoor scooter unloaded before we left. He was in no shape to do that. This will need rethinking so I can independently enter and exit. I’m sure this won’t be the last time Ron is out of commission.
During the four hours he was gone, I watched TV in bed and had time to think about what I’d do if he were no longer in my life. A bout with bladder cancer frightened us about five years ago but he’s well, just aging, as we all do. Someday, one of us will die. If it’s not me, and I’m convinced it will be, I’ll need to change things.
I’d definitely wear one of those push button bracelets that summon help. No matter how careful, I sometimes slip trying to transfer or simply miscalculate my grip (such as it is) or my reach or distances. I’d make the shower arrangement permanent so the transfer bench couldn’t move. I’d have two, or even three, bars of soap available in case I dropped one, or two, which is very likely. I’d get the appliance people to fix the dryer door so I could open it myself. I’d find out where the shut off to the air cleaner is. It hums all night if you don’t and makes my bed feel like there’s a steam engine behind it.
I’d also have to arrange for house cleaning, garbage take-out, window and floor cleaning, snow clearing and grass cutting. These things can be bought or begged. But what about hugging and handholding and morning and night kisses and talks about everything in the news and the neighborhood? Those you can’t “arrange.”
I’d also have to keep my wits about me. When I’m stressed or really worried about something, I lose the ability to concentrate and concentrate is what I must do if I’m going to transfer successfully without falling. Every move from pushing up from my scooter arm rests, locking my knees, undoing my Velcroed slacks and trying to pull down underwear (the slacks fall because they are lined with slippery Bemberg to reduce pain), swiveling and reaching for the VersaFrame arm rest on the toilet, reaching back, grabbing the other arm rest and unlocking my knees to sit, is calculated. The reverse is true for getting up, except I have to put a cord around my neck that is attached on either side to the inner part of my waistband so my slacks don’t fall down around my feet. If they do, I simply cannot grip them to pull them up. I also need both hands for balance trying to get the garments up. Bending isn’t an option.
So, just going to the bathroom is quite an operation for me. People may wonder why I don’t do morning meetings! If I don’t get most personal things done with in the morning, a simple trip to the bathroom can take forever and if I’m in a strange place, I simply cannot get up off a regular toilet. Bars don’t help. My hands are too weak to grip. I’m stranded.
One false move, even when I’m home can see me impaled on the Versaframe arm rest or crumpled in a heap on the floor, caught between the toilet, the bathroom counter and my scooter. I almost did that a few months ago when my hand slipped off the Versaframe and I went down on my ribs. But bruised ribs are nothing compared to broken foot fusions.
Sometimes a few long hours apart can be beneficial. I know my life would change drastically without Ron. I don’t particularly want to live here without him. And, in truth, I don’t think I could. I also like to be around people too much to live alone and obviously, I need help. I have to think more about it. He could die before I do. It’s something that has to be faced.
I know I’ll manage somehow, somewhere, but it might mean giving up the home I love so much. Or, it might mean having help come in on a regular basis and

One of my orchids

different ways of looking at how things are done. An open, flexible mind will likely save the day, no matter what happens.
As the early morning came, I listened to the silence in the house, and wondered what was being done to him to relieve his pain. The house was empty. Except for me and 20 or so orchids growing in the corner of my bedroom everything else was just stuff. I enjoy being alone once in awhile but this was different.
The phone on my pillow rang. It was 3:30 a.m. and he’d just called a taxi to come home. I waited by the kitchen window for the cab. To say I was happy to hear him open the carport door is an understatement.
A week later, Ron’s back to normal with a watch on his prostate, a prescription for Flomax to help him urinate more easily and an appointment for a bowel examination.
What the future will bring, no one knows. But with both of us aging, my CMT, and Ron’s plumbing problems, it needs to be a topic of discussion if we’re going to face it realistically. And, I can almost guarantee, it won’t be boring.

New Canadian CMT forum launched

Today, the new CMTCAN forum on yahoo groups was opened to the public.

Our CMTCAN logo

My reasoning for doing this was not to make more work for myself but to help Canadians share information about CMT and what help is available to us in this country. We have provincial health insurance that pays for some things, the Muscular Dystrophy Association that pays for others. We have specialists in places most of us aren’t aware of. Trying to find an orthotist who knows CMT isn’t easy. Trying to find a custom boot or shoe maker isn’t easy. And, don’t get me started on trying to find a doctor in Canada who will sign an application for medical marijuana if you’ve tried all of the pharmaceuticals and nothing helps your CMT pain.
I’d like to see Canadians eventually get together in support groups if they want to, but right now we are so spread out, there’s no way. But, I’ll bet everyone with CMT knows one other person with CMT. If we spread the word that the forum exists that way, soon we’ll know where CMT people are and we can do things in a more organized, cohesive way.
To me there is nothing more comforting than being with your own kind, so to speak. I still remember being surrounded by people with CMT in Niagara Falls, Calgary and Toronto, and New Westminster, British Columbia when I attended support group and/or conventions there as head of CMT International. It’s a wonderful feeling to not have to even think about your walk, your lack of balance, your hands. Everyone is in the same boat.
CMTCAN will share Canadian content but anyone, anywhere may join. To sign up go to:

http://health.groups.yahoo.com/group/CMTCAN/

and please tell your CMT friends, especially if they’re Canadian.
Cheers and until next time, take care,
Linda C., CMT 2A2, St. Catharines, ON, Canada

A loved one passes.

When someone you love dies, no matter that it is expected, or you think you’re prepared, it’s still a shock.

Dorothy Crabtree on the Lakeside Park Carousel in 1995

My mother, Dorothy Crabtree, died Aug. 10. She was 96 and had been in a nursing home for four years.
She had been an antiques dealer for more than 40 years and in 1970 raised the money to save a beautiful old Looff carousel from going on the auction block. It remains here in St. Catharines for the enjoyment of everyone – who can get on it – I’m trying to get it made wheelchair accessible. A ride is still 5 cents!
My sister and I watched her deteriorate from walking, more or less because when she went to the home we were told ‘No one walks on this floor’ so she was put in a wheelchair, to wheeling herself round the wing, to being bedridden and then a morphine induced coma until death.
It was a bit like that movie, The Curious Case of Benjamin Button, where Brad Pitt got younger as he aged. I think we all get younger (mentally) as we age, if we live long enough.
The body may have been old, bent and wrinkled but Mum’s mind was getting more child-like as she aged. We were buying her clothes for Christmas four years ago, then dolls and stuffed toys as she regressed into a child-like state. She couldn’t comprehend what was said to her and she stopped talking in sentences. Nearing the end she started throwing food she didn’t want and then refused to eat, and then drink, and then it was time to really think about what she’d have wanted if she could reason.
I liked to think she knew who we were but she would hold and kiss anyone’s hand at the end. That’s okay. We knew who she was. Our mother.
The day after she died, the local paper asked me if I’d write a piece on her. At first I thought I couldn’t. It was too soon. But then thought this would be the last thing I could do for her. I did it. I’m glad I did. You can read it at:

http://www.stcatharinesstandard.ca/ArticleDisplay.aspx?e=3257649

My mother is the reason I am who I am. She taught me to stick up for myself, to fight for what I believe in and “don’t take any guff from anybody.” She taught me to persevere against all odds, and I have. She paid for me to go to art school when I was right out of two and a half years of plaster casts after having my feet and ankles fused. Art school was in Montreal many miles away.
She taught me to try to see the good in people and, most of all, I think I get my ability to empathize from her. It’s not fun when you feel so deeply for someone that you hurt because of their situation. Not fun at all. Empathy can burn you out. I can be insensitive, yes, but with good reason. If you let empathy take over, you can get walked on.
Mum had CMT, or at least, I believe she did. Her little feet look so much like text-book CMT feet it’s scary.

A strong old hand

A CMT foot?

I didn’t have the heart to ask that blood be drawn for genetic testing. She wouldn’t have known why they were sticking her with a needle. She might have fought whoever was doing it. Why put her through that? My sister did give me some of her hair though. I don’t know if that will tell us or not. Maybe someday.
Mum’s hands were very strong right to the time she died. Her feet, though… those feet.
When Mum was alive I felt balanced. I still had my beginnings and past in my mother, and a look toward a future I’ll never see, in my nieces. Now one end is gone. My past is no longer there except in my memories.
Sister Kathie found a paper in Mum’s belonging asking us to use our discretion when she could no longer think for herself. Turns out we did what she wanted.
The love is still there. It always will be.

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