How do I love thee?

Let me count the ways? The ways I use to find people who have CMT in my area of southern Ontario that is called the Golden Horseshoe.

First, I have to say this: I am never so comfortable as when I am in the company of my peers. It doesn’t matter that I can’t walk or stand or pick something up, hold my food like others do or even project my voice. You get me because you know you could easily be me, if y0u aren’t already, and I love you and get you because of it. You could say we understand each other in a very fundamental way right from the get-go.

I live in St. Catharines, Ontario: a city of about 130,000 people in the Niagara Region that includes 430,000 people on the south shore of Lake Ontario. St. Catharines was once a huge General Motors city, and we still have a large GM plant here, but now our region is known more for our award-winning wines, our innovative college and university programs and, of course, Niagara Falls. And, our brew houses are beginning to take off big time as well; Niagara College even offers a course for budding brewmasters.

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The Golden Horseshoe refers to the area from the Niagara River that slices through the Niagara Peninsula from Lake Erie to Lake Ontario in the east to Hamilton and Oakville in the west and the border of Toronto in the north directly across the lake from us.

For the last couple of years, I have wanted to pull together a group of CMT people in the Golden Horseshoe area for a social meeting. However, I have never given it the time needed to find enough people to make up an actual meeting with more than four or five. This summer I’m doing just that and I have made a vow, and kept it, to reach out every day, one way or another, be it through online social media, radio, television or newspapers and even snail mail to try to locate people with CMT in my area.

The first thing I did was find a venue that was totally accessible and fit the picture I had in mind of where I wanted us to meet. My husband, Ron, and I looked at four places: either the ceilings were too high, and you couldn’t hear your own voice much less that of someone else, or the place looked grungy, or dark, or too big or too small, or the cost was simply out of my range.

Finally, and I should’ve thought of this in the first place, I called my good friend Elisabeth at Heartland Forest Nature Experience in Niagara Falls. I know this place well because I was the accessibility consultant when they built it. Elisabeth told me to come down and look at the Forest View room because they had new folding doors across the grand hall and this room was perfect for meetings. Ron and I drove the 20 minutes to the Falls, parked in their accessible parking area, entered through their automatic gliding front doors and, TA-DA, the room was perfect. The first thing I noticed where the baffles hanging from the ceiling and I drove my scooter to the front of the room and asked Ron to stay at the back. Could he hear me clearly? When he answered yes, I knew we’d found our meeting place. The huge green plants, the floor-to-ceiling windows looking out into Heartland Forest and just the overall ambience of the place made me smile and I knew this was it. We can pull four or five tables together and be able to see each other as we talk. Perfect! Plus, I knew, because I have worked on all of the washrooms there, that there are at least three family-style, fully accessible washrooms just a few yards from the meeting room and there’s even a washroom with an adult change table plus another one with ceiling track and a lift available.

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After the room was booked I set myself the task of locating people in my area who have CMT. During the years Ron and I ran CMT international [1984 to 2002] I knew thousands of people who had CMT but only six or seven in the Niagara area. Now, 14 years later, some have moved and some have died but I was able to start with four or five and to date have found 15 who have said they would love to come to a meeting and socialize with others who have CMT. I am hoping for 20. If I find more that will be wonderful.

I remember when we had conventions back in the CMT International days and were hosts to close to 200 people at a time. The conventions were wonderful and I met a huge number of terrific people but I never had much time to talk at length to anyone. I’m thinking that now smaller is better and having time to talk to each other will be precious. Yes, guest speakers can teach us a lot but we can also teach each other a great deal; I know this for a fact.

If you live anywhere within the Golden Horseshoe from Fort Erie on Lake Erie to the Toronto border, or even in Toronto, and would like to come to the very first CMT Niagara support meeting, Sunday, September 18 from 1 to 4 PM at Heartland Forest, 8215 Heartland Forest Road [formerly Kalar Road] in Niagara Falls, ON, please contact me through this page or at linda@lindacrabtree.com or 905-685-0496 during afternoons.  In fact, it doesn’t matter where you live, if you’d like to come to the meeting, and perhaps stay a few days in our beautiful Niagara Falls, you will be more than welcome to join us. And, If you’re looking for what you can do while you’re here and for accommodations, please go to AccessibleNiagara.com where you can find everything you need to spend a few day with us.

It has been so hot here in St. Catharines during the last couple of months that I can rarely go out without experiencing a lot of pain so working on my book and hunting for people with CMT has become my summer mission. And, I guess it’s how I do my part going into the CMT month of September. I’m excited about the meeting and for this old gal, that’s really something.

Till next time,

Linda

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Come shopping with me

There’s nothing I like more than shopping… well, maybe one or two things, but shopping certainly is up there in the top three.

Saturday my dear friend, Alison, and I drove down the road to Jordan Village, parked in their large parking lot (we actually found an end spot so I could easily let down my side loading ramp) and then headed for the shops located in an old winery. The building is long and low. Things have changed there and I can honestly say changed for the better; not that they were bad in the first place, but when you can make something even better, Wow!

IMG_1719We tend to be systematic shoppers and started at the north end’s CHIC by Janssen. We’ve always loved this place and delight in perusing the elegant reproduction furniture, sculpture and art.  I’ve never bought anything there because my house is full of primitive pine but I think I would if my tastes were not of a simpler ilk. As I gently wound my scooter through all the precious woods we were serenaded by a lovely young lady playing the guitar. What a way to start the day.

After that it was Beauty Safari where Alison spied an absolutely beautiful, deep burgundy alpaca shawl very reasonably priced. We found out it was made by artisans in Bolivia and and the purchase of the garment helps the person who made it. That shawl will look marvelous on my naturally blonde friend as she walks to work in the fall.

Next it was the Jordan Art Gallery where we had a lively discussion with George Langbroek, one of the gallery partners, whose work is truly innovative. You can spend hours in the gallery looking at paintings, hanging sculptures, pottery, glass, wood, jewelry and so many beautifully designed items, you actually have to pull yourself away.

Then on to the Heritage Gift Shop which benefits the Jordan Historical Museum. This little shop is manned by volunteers and they have a vast array women’s accessories, jewelry, jams and other condiments and I have to mention their famous fudge counter. I spied a lovely, summer weight light beige scarf marked down half price and snapped it up immediately. I have a slight hump on my back from 40 some years on a computer and a scarf lets me feel better about it. Because the shop is run as a fundraiser for the museum there is no tax. You can’t beat that!

Our next stop was Frankie Sez Hatters. Now I don’t often visit hat shops because they bring out the nut in me and I start cracking up trying on hats in the mirror but this place is different. Floor to ceiling hats, all beautifully made, got my attention and Alison was all for giving it a try. The place was very crowded and I had to look under a woman’s arm to get a glimpse of myself in a mirror when I found what I thought was an absolutely delicious hat. It is sort of a white painted fine burlap with a huge brim and since I don’t exactly have a tiny face, I think it works. We are having such a hot, sunny, dry summer here in Niagara that you really need something to keep the sun off your face and the back of your neck. That marvellous hat became mine and I still love it although the wind has a tendency to blow it off my head. Being on a scooter, I can’t easily retrieve it, so I’m going to attach a long shoelace to the inside and, even if it does start to take off, it won’t go very far. As I was waiting to pay for my purchase I looked up toward the ceiling and noticed some artwork that I was sure was done by my brother-in-law, Paul Gosen. He’s named pretty well all the hats known to man and his illustrations are perfect for the space. Interesting stuff and very well-done as is the shop although they could use more mirrors.

20160716_151803To our delight we found out that Frankie Sez Hatters was one of four shops newly built in what was a large antiques shop area. Now that area, The Village Mews, houses the hat shop, Mary Rose’s Lavender Boutique which smells absolutely delightful, women’s clothing at Pamela’s, and Valley Jewelers. Plus, something that Jordan Village has needed for a long time: accessible washrooms for the shopping public.

We next visited The Kenneth Lane Smith Gallery where you can’t help but ooh and ah over this man’s beautiful photography. We chatted with Kenneth for a few minutes and then left feeling somehow refreshed and refined simply by looking at his gorgeous images.

Time was running short so we decided to take in one more shop, (don’t believe that for a second), and headed to the south end and Arezzo, an interesting women’s clothing store. The owner was there, and I believe her mother as well, who greeted and chatted with us as we looked at everything. As we were talking, I spied a nicely designed, gray cotton sweater and, after trying it on for size, it became mine. Now that I’ve let my hair go gray, I have an entirely new outlook on color and I’m picking up silver jewelry and looking at colors that I didn’t consider before such as various shades of gray that, I think, really look good on me now.

After taking a look at my watch, we decided that we had 20 minutes before we had to leave to get home for supper, I mean when your husband is cooking you don’t mess around. So I drove down the long ramp and we crossed the road to Tintern Road Fashions, and then to the Inn on the Twenty and Spa that has just relocated their lobby from the second floor to the first and made it totally accessible. I was also told that they’re building a completely accessible guest room and I couldn’t help but offer my services as an accessibility consultant. My feeling is: if you’re going to do it, you might as well do it right in the first place.

Our last stop was IronGate Garden Elements where you can buy everything from a huge garden decorative archway to sparkling, spouting fountains and a small metal frog to brighten up your outdoor spaces. Wonderful stuff that conjures up elegant estate gardens.

And then it was back to the parking lot and the 15-minute drive home. I have to say I was delighted with the selection of beautifully designed women’s clothing at Jordan Village. I’d rather spend my money on one well-designed, quality piece of clothing that makes me feel good every time I wear it than and five pieces for the same money. They say that if you don’t wear something after a year it’s time to throw it out but when you buy quality clothing in classic styles you can wear them for years. Some things in my closet are 15 years old… they are timeless.

There are still other shops to visit in Jordan Village, not all of them accessible to me on my scooter, but the village still remains my favorite local place to explore and shop, bar none.

God, I love shopping!

 

 

It is an honour

Last Wednesday I had the honour of receiving David C. Onley Award for Leadership in Accessibility at Queen’s Park in Toronto.  David was the 28th Lieutenant Governor of Ontario.

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The entire group of honourees with Maayan Ziv in the blue top, David Onley beside her on his scooter, the Hon Elizabeth Dowdeswell, Lieutenant Governor of Ontario, and me. 

My husband Ron, my good friend, Alison Galvan, and the lovely lady that nominated me, Katherine Fisher, from the Niagara Parks Commission traveled with me to Toronto in the early afternoon arriving at Queen’s Park at 3 pm. The ceremony was to take place at 3:30 and we were told to move our van when we had parked and all gotten out. We have no idea where the entrance was as I was totally disoriented and couldn’t follow the map that was given us. We were finally directed to the front of the building and a long ramp leading down.  Alison, who drove, moved the van and I was taken to the elevator to be transported up to the Lieutenant Governor’s suite for a protocol briefing.

The ceremony began at 3:30 and, I tell you, some of the neatest people were honoured: people who worked so hard to promote accessibility, people who are disabled, people who aren’t, business people and volunteers – all who did so many innovative things to further the cause. I was truly humbled and honored to be amongst them. The one that really sticks in my mind is Maayan Ziv of Richmond Hill, who receives the youth leadership award for her activism and social innovation that uses crowd sourcing to pinpoint the accessibility status of locations on an interactive online map. Obviously, she is young, smart and well-versed in computers. Her generation will go far in changing things for people with disabilities. People of my generation have had to learn a lot because we were born to ignore people with disabilities. Now, integration is the only way to go and no one can argue with that.

My award was in the role model category and I guess after you’ve worked on accessibility issues for as long as I have, (I wrote my first article on access back in the early 1970s), you can be considered a role model providing you put everything you have into it, made sure you were as accurate as you could possibly be and didn’t really tick anybody off unless they deserved it. I’ve written my newspaper column now for 20 years, ran CMT international for 18 years retiring in 2002 and now AccessibleNiagara.com for 14 years so you can’t say I don’t stick to things.  As long as I live I will be fighting for access, not just for me, for everyone.

After the award ceremony we needed some food. I had made a reservation at a restaurant over on College Street. You think we could find a curb cut off of Queen’s Park? The walk to the restaurant was supposed to be five minutes. It took us 20 minutes to find a curb cut. Finally, we were across the road and heading for College Street. Alison had GPS on her cell phone so we only changed direction maybe four times before we found the restaurant. I used to live in Toronto not too far from Queen’s Park but after all these years everything was new and different. Once at the restaurant we all had a decent meal, retraced our steps (minus getting lost) back to Queen’s Park and then headed home down Spadina Ave. I wouldn’t want to live in Toronto if you gave me a condo there. I’m so used to a small town, being able to get from one side of the city to the other in a half an hour and very little pollution, that I think Toronto would be the end of me.

Everyone at Queen’s Park was very gracious and organized but they do need better signage when it comes to parking for people with disabilities and directions to curb cuts.

David Onley, who uses an electric scooter himself, by creating this award will, year after year, bring attention to a few of the many people who work towards making the lives of others who are disabled a little easier and by doing so, create further awareness. Thank you, David.

The certificate is on the wall, the first cheque I’ve ever received with an award is in the  bank, and life goes on, one challenge at a time.

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Barack Obama said something to the effect that if you want to see change happen you have to be the one to do it. What a world it would be if everyone worked toward change for the better.

 

It’s all in how you look at it

Today is my birthday. I am 74.

I look in the mirror and I see old.

I’ve stopped colouring my hair because I can no longer sit for almost three hours in a salon and really resent paying close to $130 for someone to do what I used to do for myself. Now, my hair is short and it is definitely heading towards the grey side. And, I’ve even stopped painting my nails because I can no longer hold the brush.

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It is time I stopped kidding myself.

I don’t like what I see, it doesn’t make me happy, yet it is a testament to the fact that I am still here, still alive, despite the difficulties and the many barriers put in my way.

I’m still writing my autobiography. During the winter I read all 103 issues of the CMT Newsletter that we published from 1984 until 2002 featuring so many wonderful people and their heartfelt courageous stories. And, I’ve recently tackled the 18 personal journals I kept during those years. Really, they are binders, full of photos, written stories, cards, menus, airline tickets; the stuff memories are made of. All of this will make three chapters of the book…the CMT International years.

While going through the personal journals I found the letter below. I wrote it to my mother on her 78th birthday back in 1993. She was only four years older than I am today and I know now how she felt. It helps me see what I’m having trouble seeing in myself. I hope it helps you when you feel as if age and your CMT is everything and you’ve lost what makes you shine. You haven’t, or so my husband tells me.

April 17, 1993

Dear Ma:

It concerns me that every time you look at a photograph of yourself you get upset. I know you are 78. I know your hair is thin and you have wrinkles and black circles under the eyes. But, your skin is as smooth as a baby’s bum and I’ll never forget the feeling when our cheeks touch as long as I live. I know that what you see isn’t you and believe me, what you see isn’t what your kids see either.

I can only speak for myself but I’ll bet everything I have if you ask Ron and Kathie what they see in your beautiful face they’ll agree with me and add some.

Your beautiful face is a symbol of love and caring. It reflects an open heart that cares so much for people that you spend most of your time trying to figure out how to help them.

Your beautiful face reflects the million times you have thought about us and cried over us and laughed for and with us.

Your beautiful face reflects the millions of tears shed in loneliness and heartbreak for our father, your husband.

Your beautiful face reflects the years spent surviving alone and making the very best of it.

Your beautiful face reflects the years spent with your grandkids watching them grow up under the watchful eye of your younger daughter with the beautiful voice.

Your beautiful face reflects the love you have for your son and the renewed closeness you two have established.

Your beautiful face reflects the close eye you keep on your eldest and the guilt you sometimes feel for her disability.

Your beautiful face reflects honesty, a sense of fair play, a keen intelligence, a courageous heart and loving soul.

Your beautiful face is never going to get any younger, but with every year we know you more, love you more and pray we’ll have you here with us for many more years.

So please, hold that face up to the light, let everyone see it, smile and be proud of that face for it reflects what has made three people what they are. It has touched millions through you and your children and grandchildren. Be proud of it because we are.

Don’t ever despair of that lovely, timeworn face. For us it is the most beautiful face in the world.

I couldn’t say this at your party; but it is from my heart and my birthday present to you and your 78th.

Much love,
Linda

And what I wouldn’t give to see and touch that beautiful face 23 years later. Mom died five years ago at age 96.

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Mom’s 101st birthday would have been last weekend. With Mother’s Day coming up and my birthday today, I thought what I wrote back then would honour a wonderful mother and bring to light just how much loving her back then has helped me love myself now that I’m facing the same thing…trying to love my ageing self.
Until next time.
L.

 

 

Coping with lost hand/wrist strength

As my CMT progresses I’ve developed wrist drop. Just as I developed foot drop many years ago and I couldn’t lift my feet with my atrophying ankle and foot muscles, I now can no longer lift my hands with my wrists. My hands flop in a downward position unless I hold them palm up or sideways. And my fingers won’t grip anything. They are all so weak I have to use two hands to hold most things using a push-together method and I constantly drop things as this “method” is far from fool-proof. The need to use my hands (I’m left handed) to eat, do my hair, makeup, hold and pick up anything, is severely compromised and I searched for help from a local orthotist. After measuring with a laser and using a computer program to get the proper dimensions, etc., she made a wrist brace for me similar to the one I‘d used off and on for years only the new one is stiffer, holds my wrist up better and clips on and off without Velcro or any other type of fastener I wouldn’t be able to work independently. It minimally obstructs any chore I need to do and helps hold up my wrist and hand.

Here are some of the things I’ve adapted and/or use that help me cope with very weak hands and wrist drop. A few of these have also been suggested by readers on the facebook group page CMTUS. Many thanks

First the brace: 

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The brace just clips on and off easily. The material spreads so I can bend it to get it on by myself. The short protrusion up under the palm of my hand holds my hand up but doesn’t interfere with whatever I’m doing.

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I’ll begin in morning

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My mouthwash and moisturizing  lotion is in pump bottle. My electric toothbrush takes two hands to hold and I have to keep it in my moth to turn it off, leaning it on the sink while trying to work the “Off” button. It’s not easy but I get a cleaner mouth than I do brushing with a regular brush. To floss, I wind a long piece of floss around both index fingers – no need for thumbs. A plastic glass bounces when dropped and is light. A paper cup is good but wears out fast. Buy shampoo, lotion, etc., in a pump bottle or replace pour tops with dispenser pumps. Dispenser pumps can be purchased in various sized and the tube can be cut to fit.

Single lever on sink tap

gripwashletTOTO Washlet – no hands – just remote control to wash and dry both front and back areas

Forget nail polish but keep nails clean and fairly short. Medium length nails can help us grip things, dig into slippery soap, pick up very small items with a scooping motion even if you have no pinch between forefinger and thumb.

Getting dressed

Brassiere – can’t do up – I still need help with this one and my fingers are too weak to pull one down.

Socks – need help with but wear knee high alpaca – soft and warm

Boots – could manage but have help – knee-high boots have skate hooks on them so they are easy to lace up but difficulty tying bow.

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House Slippers (above) – have long loop on back of each one so I can flip it over my foot, twist the slipper with the loop and it is on. I wear sheepskin-lined, high moccasins handmade by aboriginal Canadians.

Slacks – can’t pull up – Velcro on slacks waist – slacks made with no waist band, lower in front and higher in back with elastic in back and longer in the leg as I sit all the time and a longer pant looks better.

T-shirts, cowl necks, turtle necks, over the head, no buttons anywhere, ever.

Sweaters – almost all cardigans – no buttons or if buttons, ignore.

Outdoor jacket – O-rings on double zippers and Velcro at front and wrists

Fly fronts – waxed shoe laces made into a loop and cut to fit the finger work well because they are stiff enough loop through the zipper closure to be opened easily with one finger but soft enough to tuck into a fly and not show

Meals

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Clothes peg on any twisted plastic bag to close it – use my teeth – pumpkin seeds, nuts, bread. I know the above looks like dog poop but it’s prunes.;)

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Plastic/acrylic cutlery – small, light sharp-tined silver fish fork (second from left) is good for just about everything that needs spearing. Both spoons, far left and third from left are coin silver, very old, and very light. They can be found in antiques stores. I keep a plastic fork and small, sharp knife in my purse for dining out when I can’t lift the supplied cutlery. The spoon second from the right with the serrated end is good for soft-boiled eggs and grapefruit.

griphandlesHandles on a soup cup and light, large, acrylic mug used with a straw help me hold, eat and drink and the large pitcher with a flip-top opening on the lid lets me pour All-bran into my cereal dish without spilling it.

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A plastic water bottle fits my hand because it is skinnier two-thirds of the way down. I use maybe six bottles a year preferring to refill them with reverse osmosis water from our kitchen. I can’t lift the bottle if it is full and need two hands most of the time to lift it. The bottle cap screws on easy with very little strength. The drinking glass is clear acrylic and very light.

 

gripbibI use a long bib in a muted colour to protect my clothes when I eat. I even take it to restaurants and no one really notice or cares. It has Velcro and an O-ring at side of neck so I can easily put it on and  off. It has saves me a ton on dry cleaning.

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I can open the freezer with one hand, no thumb. The refrigerator takes two hands.

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Supplements

grippillopenersetcHave two week-long pill boxes. I take 8 vitamins and one prescription drug a day. Two boxes means I only have to fill the boxes every two weeks. Try to buy vitamins in bottles with flip-top lids. Your pharmacist can also supply easy-open, flip-top pill bottles if you request them.  I also use a small utility knife to cut things out of newspapers, open boxes, cut soup/milk containers, etc. and a seam ripper will also pierce protective caps on food packages and do many chores our fingers won’t.

Work

Dragon Dictate is my saviour when I’m too tired to type. I don’t find it good for anything longer than 700 words or so but have figured out ways to work round its limitations. I still prefer to type with the knuckles of my little fingers though. Brain to hand is more satisfying for me than brain to word to microphone.

grip6thdigitSome may be able to use a Sixth Digit, a ring with a rubber-tipped protuberance on it to hit keys, microwave buttons or anything else that sticks out and needs pushing in. I tried one on each little finger on my computer keyboard but found they wobbled too much to accurately hit the keys but they are worth a try. I’m still experimenting.

Shopping – I have difficulty picking up items from the shopping cart and placing them on the conveyor belt. I usually ask someone for help. If paying with cash I will open my wallet and ask the person at cash to take out the amount needed and replace change. I keep my charge cards in an easy to reach pockets in my purse and have used my swipe card extensively as it requires far less handling and finger dexterity than anything else. I have loop ties on zippers, on my purse and O-rings on my wallet but still find shopping difficult.

Ready for bed

Ron cuts my Dove soap bar in half to fit my hand for shower use so I don’t continually drop it. You can see it just beside the face of the hand-held shower head.

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My Moen hand-held showerhead comes with a  handgrip

I buy my shampoo/conditioner, facial scrub in tubes and push them up against my leg to get the contents out

My shower has a large seat so almost everything can be bedside me therefore I drop less.

griphairdryerMy hair dryer is very small and light, a travel-style, and I use it for hair everywhere. On the advice of a noted physician, I use it for all areas I want really dry such as under my breasts,  under arms and between legs. Rashes from constantly sitting are reduced when areas are really dry. I’m not able to really grip it but it is light enough for me to balance on my hand to do my hair and I can dangle it by the cord to reach other areas.

Over the head nightgown – Velcro at wrist

For warmth – Cut off hoodie with zipper and hood

Long pull chain on light over bed

Automatic bed – remote control

Everything close in bed area

gripurinalUrinal with cord around its handle and cord looped over your neck so you can’t drop it as it gets heavier. Urinal has snap top lid. I use this arrangement in the middle of the night when I don’t want to wake anyone up going to the bathroom. With the hem of my nighty in my teeth, I slide to the edge of my scooter seat, put the urinal under me and as it gets heavy the cord stops me from dropping it as my fingers alone aren’t strong enough to hold it.

Leisure

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I love my KOBO Reader and borrow ebooks from our local library via my computer. The KOBO has a back light so I can read in the dark and it only takes a finger or knuckle touch to turn the page. I can’t hold a book or hold pages open. I did find a heavy metal dragonfly in a garden shop. I’m not sure what it’s original purpose was but it holds pages open on actual books beautifully while I read and eat breakfast at the same time. The topics I want to read about sometimes aren’t available via ebook.

Art – flip top lids on paint tubes save me from a ton of frustration.

Photography – I tried all kinds of cameras when my right index finger got too weak to push the shutter on my large Nikon. I found a small, light Canon, (in sparkly red no less), that I can hold and take horizontal photos with. I still can’t hold a camera vertically and push the shutter.

General

griptelestikDrop something? Everyday, more than once.  I use a Telestik because it doesn’t require you to squeeze something closed. I can barely grip anything much less squeeze something to make claws open to grab. The Telesik has a powerful magnet on it that isn’t used very often because how many things only look like metal these days but are actually plastic. It does grab a metal pull chain to turn on a lamp. However, the magnet is mounted in a hook that allows you to hook dishtowels, tissues, etc. from the floor. It also has a sticky disk as well and that disk picks up just about anything if you keep it sticky. Both reachers extend way out and telescope into an 8” case. I keep one in my scooter basket.

griprollonpliersNeedle-nosed pliers have saved my bacon numerous times for all kinds of gripping and opening. I can’t hold roll-on bottle. I use something called Doctor’s Pain Formula Super White Stuff for burning pain in the 3 oz. bottle. It makes the burn worse for a few minutes and then the burn lets off. Holding the bottle upside down, down under my knees (that’s where the pain is) is impossible so Ron bent a wire cost hanger into a loop that’ll take three fingers and attached it with duct tape. It works like a charm. I can hold it.

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I realize that there are all kinds of useful items out there sold to help those of us with no grip, etc. but these are the things I’ve used and modified that work for me. If this post helps even one person with CMT who has weak hands and/or wrist drop it’ll be mission accomplished.

Till next time.

L.

 

 

 

 

Love and CMT

It’s a fact: CMT doesn’t affect our ability to give and receive love.

It’s Valentines Day. The day where you wish you had someone to love and someone who would love you. We’re lucky if we do.

There was a line in the movie Love Story that went, “Love means never having to say you’re sorry”. Not true. Love means knowing when to say you’re sorry so, whatever the problem, it doesn’t fester.

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Here is what love means to me:

Love wants only the best for the person. Jealousy doesn’t exist.

Love means rejoicing with them when they experience success.

Love means anticipating their needs and acting on them, if possible

Love means feeling what they feel, empathy, so you can be as compassionate as possible in any situation

Love means listening

Love is a gentle touch or caress

Love means looking after yourself so you can look after others who need you.

Love means forgiveness

Love is being kind. We all know what it means, sometimes we don’t practice it, even with those we love.

Love means patience; sometimes easier said than done, but try.

Love means understanding: you can’t give what you’ve never learned or been given.

Love means giving, period.

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If you love someone, say it. It makes their eyes sparkle and brings a smile. If you can’t say it, show it.

My husband of 35 years has told me he loves me five times but he shows me every day, all day. He listens to me, we talk about everything, we read the newspapers together and discuss it. He has never failed to help me pull up my slacks after I use the bathroom, he opens just about everything for me, he looks after the house and gardens, buys the groceries and cooks, he does dishes and washes our clothes and he rarely, if ever, complains, but when he does, we try to make it better.

I asked him how he felt about all of this and his take on it was that he’d have to do most of it if he were alone so doing it for us isn’t such a chore. And, I think he’s pretty happy; he has someone to love and care for and someone who loves him more than words can say. And, we still kiss good morning, good night and in-between. We still hold hands! In my books, that’s love. I tell him I love him. He usually doesn’t reply but the look in his eyes tells me everything. I wish with all my being I could be an equal partner in this relationship but my CMT has messed that up big time. We do what we can with what we have.

I am so grateful I am loved and that I have someone to love. CMT has taken a lot from me but being loved and loving someone has replaced anything CMT has stolen a million times.

Plain and simple: I wish you love.

NPG5

He even helps me water my orchids.

Happy 2016!

I’d like to wish you who read this blog a happy New Year.
Because it is a leap year we have 365 days left to look after ourselves so that we can look after others.
I always think every day is an opportunity to keep trying to get it right, whatever “it” is. So whatever you’re doing, simply do your best each day, and it will be good and you will go to bed knowing you did all you could. No one can ask more of you than that.

“Write it on your heart that every day is the best day in the year.”

Ralph Waldo Emerson

SMMil

Milbanke – a detail from a serigraph by an old art school pal of mine, Canadian artist, Stewart Marshall – Milbanke is on the north west coast of British Columbia.