Back to Normal

Well, Christmas has come and gone along with all the business that goes along with it and life is now back to normal, whatever that means.  

Christmas eve and a good part of Christmas day were spent at my daughter's and it was a very enjoyable time.  On Christmas 

Eve, however I almost had to back out because I was having some minor bowel problems and found myself visiting the bathroom more frequently than normal.  This in itself was not the real problem.  Rather, my hesitance was a result of the fact that using an unmodified toilet is a major challenge.  And secondly, the lack of mobility in my hands, arms and shoulders makes it impossible for me to wipe my butt.  This brings me to today's topic about ways to make our lives easier through the use of a variety of devices.

The first and most extreme step I took was moving out of my row house to an apartment building.  Although my apartment itself is not modified, living here means I have automatic doors, an elevator, covered entrance where I can get onto the paratransit bus without being exposed to the elements, and living accommodations confined to one floor, not to mention the fact that I live in the heart of the city with ready access to most amenities.

In order to make my days easier I have purchased a number of items beginning with those pictured here in my bathroom. They include a clamp-on bar to assist, not only getting into the shower, but also getting on and off the toilet, a raised toilet seat and finally a handheld spray attachment which I use as a sort of bidet in place of wiping.

I also purchased a hospital bed which I can raise so it is easier to get in and out of bed.  In addition, I can elevate my head which helps avoid reflux problems.  I also have a 3" thick memory foam mattress pad which has made sleeping much easier.

Other conveniences include a mechanical reacher for picking things up off the floor, a frequent occurrence since I am constantly dropping things.  The reacher also comes in handy when getting dressed ( putting on my pants and socks primarily).  The list also includes non-elastic socks which are easier to put on with the reacher, plastic dishes which are lighter and don't break when I drop them, pulls on zippers because it's too difficult to grasp those little zipper things they come with, built up utensils for eating and food preparation, spring loaded scissors, a crock pot and toaster oven to simplify cooking, an electrically operated recliner and I'm sure there's more which escape me at the moment but you get the idea.  

I also found a local online grocery store which is a real life saver in the winter when I can't get out so easily.

In summary, there is an endless list of things we can do or purchase to make our lives  easier so why not take advantage of them?

My Other Hobby

In the very early stages of Scleroderma, my hands were one of the first things to be affected. In fact it was my hands which, when viewed by a rheumatologist on my first visit, determined my diagnosis within 30 seconds of my arrival. And within six months or so they had reached the stage in which they remain to this day. I would estimate that I have lost about 90 % of the movement in my finger joints and my hands are locked in a half fist position. This is all fairly typical of the disease so I'll say no more.

One result of all this was that very early on I got rid of my two guitars and the one amplifier I owned because I was convinced that I would never play again. I was never really very good at it anyway but did find it a good way to relax.

Last May (2008) I started thinking about how much I missed playing the guitar and wondered if there wasn't some way that I could take it up again with the result that I started doing some research on the internet. Without going into the entire proecess let me just say that by mid June I took delivery of a 1960 something

Japanese made lap steel I'd bought on ebay. My son-in-law brought

over a small practice amp, restrung the guitar for me, plugged it in and I haven't looked back since. The beauty of this setup is that by using an open tuning, placing a slide on my left thumb and a pick on my right I can make this thing wail and it doesn't sound half bad. In fact I can now play by ear and improvise, something which I could never do before.

In July I bought my own amp, a Fender G-DEC Jr and last month I bought a second guitar, this one a 1950's something National lap steel, the ones with the killer pickups. This one needs a minor repair before it is playable but I hope to get that taken care of in the new year, as soon as we get a reasonably warm day with clear sidewalks so I can make the three block trip to the guitar shop. And why, you may ask, do I need two guitars? Well, the plan is to leave one in my son-in-law's music room so I can jam with my daughter on her mandolin and also my son-in-law and his musician friends. The other guitar will remain in my apartment for practicing. Now if I just had one of those old vintage tube amps I could really get that killer blues tone going. Been watching them on ebay but no deals to date.

And what's to be learned from all this? Well, simply that one doesn't necessarily have to give up the things they love if they keep an open mind and are willing to adapt to new ways of doing things. And this is true of so much of my life now. It's all about maintaining a positive attitude and finding new ways of doing things.

Update

I now have a third guitar, a post war Rickenbacher T-Logo, and a 1948 Oahu amp. The only problem is my neighbours complained about the noise to the building superintendent so now I have to turn down the volume. Not near as much fun but hey I'm still having a blast. Oh yeah, I'm also looking for an acoustic lap steel so I won't be limited to playing where there's an electrical outlet.

Today I had a parcel that needed picking up at the Post Office so I took the risk and ventured out.  I didn't get a hundred yards down the street before I got stuck in the snow.  Luckily a very kind gentlemen in my apartment building noticed me struggling to get unstuck so came out to help me.  I made it to the post office without further incident even though it meant using the road instead of the sidewalks every now and then.  

I didn't let this little incident upset me, instead I was thankful for the help of a stranger and spent some time later pondering the fact that people, usually complete strangers, will go out of their way to assist me, opening doors, getting items off of unreachable shelves in grocery stores and in countless other circumstances.  It speaks well of humanity don't you think?

I teach classes for the Arthritis Society, the Arthritis Self Management Program, and I often tell the participants that, in one sense, I am luckier than most of them because my disability is visible and subsequently people go out of their way to be kind and helpful.  Most of them, however, despite having a debilitating illness, look perfectly fine with the result that, not only strangers, but even family often don't know, or forget that they would benefit from assistance from time to time.  

I see that I've had three visitors to the site so far.  If you do stop by, I'd really appreciate your comments, even just a short 'Hello' would be nice. 

  

Snow & Wheelchairs

Woke up this morning to discover that the predicted snow storm had indeed arrived as evidenced by a few centimeters of accumulation, high winds and poor visibility.  And more snow is on the way, on and off, between now and Christmas.  The good news is, it's shaping up to be a white Christmas.  The bad news is, I'll be housebound until the streets get cleaned up because my wheelchair doesn't handle snow very well.  Last winter I got stuck a half a dozen times and had to depend on the kindness of strangers to get me moving again.

So, here's the thing.  I love my wheelchair.  It makes it possible for me to walk my dog, Molly, to pursue my hobby as an amateur photographer, do my own shopping, attend appointments, meet friends for coffee and all those other activities that generally give me a level of independence I would not otherwise enjoy.  

And then winter happens and, more specifically, snow.  Any more than a couple of centimeters and going out means getting stuck becomes a real possibility.  So what are the possible solutions to this dilemma?  The most obvious one is don't go out but that's not an option simply because I'd end up going stir crazy.  Of course I can take paratransit to appointments and such but that doesn't help with walking the dog or more spontaneous activities .  Paratransit rides, for one thing, must be booked three days in advance so their usability is limited to those activities which I know about ahead of time.  Some days it'd just be nice to go for a coffee if the mood strikes me.  There's also the wheelchair taxi but that can get pretty expensive.  

What about the wheelchair itself.  I've looked into winter tires but there just isn't anything available.  Through research on the internet I've discovered that there are chairs like this one or this one (how wild is that?) which will navigate through snow but there are no dealers in Canada (is that not ironic?) and even if there were, the Assistive Devices Program (ADP) will not provide any funding to help pay the US$12 000 plus price tag.   

Another option is that I just go out and buy the chair myself but after taxes, shipping and the exchange rate are factored in we'd be approaching $20 000 and I haven't got that kind of money right now.

So here's my beef, ADP will provide funding for a chair which 'meets the user's basic needs'.  Well, since this is Canada, isn't getting out of my apartment 12 months of the year, snow or no snow, a basic need?  I'd even be happy to pay the difference in added cost for the upgrade but currently that isn't gonna happen.  Anyone out there interested in joining a letter writing campaign to change ADP's stance on this?

So, I wanted to keep the mood here positive and here I am griping already.  Hope you'll forgive me this one but I think it needed to be said and I will sit down soon and compose a letter to the minister of health for Ontario stating my concerns.  After all, with all this snow I'll have lots of time to do it.

Yesterday I said I would talk more about my hobbies and how scleroderma has influenced them so today it's photography.  

Back in the late seventies when I dragged my family off to Iqaluit on Baffin Island to begin my teaching career I bought my first SLR camera and it served me well but I eventually lost interest in photography and brought it out only rarely, like when my son and I took our yearly canoe trips into Algonquin Park.

In 2002 I bought a digital camera as a retirement gift to myself which I used to document my year and a half in Bancroft while I pursued my back-to-nature lifestyle.  That camera died a couple of years later so I bought yet another point and shoot but then, shortly afterwards, I started getting more serious about photography and took the plunge buying a digital SLR.  By this time my hands were pretty much frozen into a half fist with perhaps 10% of the movement remaining.  I sometimes joke that I've taken to  intentionally dropping everything on the floor since it's a given that I will drop half the stuff I pick up anyway.  By intentionally dropping things, there are fewer surprises and at least I will have some control over where and how hard the objects hit the floor.  And so, when researching DSLR's my first consideration became size and weight, the smaller and lighter the better.  Didn't want to be dropping my $1000+ toy now did I?

The result was that I bought a Canon Digital Rebel, the smallest and lightest digital SLR out there.  Later on I also purchased the smallest lightest lens available.  There are times when I lust after bigger more powerful cameras, especially when I see my friends using theirs but then I remind myself that I have to be practical and stay with something that I can actually use.  And of course my present camera really is just fine - you can judge for yourself by checking out my photoblog - and I'm quite happy with the results.

The biggest problem I have now is that my season for photography is too short.  When temperatures begin to drop to the mid teens Raynaud's gets in the way 'cause its pretty much impossible to take photographs with these big puffy mitts I have to wear.  Guess I'll have to start doing more indoor stuff even though it's the outdoors I really thrive on.  

Limitations aside, photography has provided me with endless hours of pleasure.  And then there's the Photoshop end of it which I enjoy as much as, if not more than, the actual taking of pictures.  When I'm releasing the shutter or testing my creative limitations in the digital dark room, I forget everything else and life is good.  Doesn't get much better than that.

Welcome

Based on my experience with my photoblog, I know how long it can take to get people visiting so I may be writing this for myself. With that in mind, I'll keep it short for now.  I'll just say that the onset of scleroderma meant that I had to make some huge changes to my lifestyle (see My Story under Links) but in the 4 1/2 years since that time I have taken up new hobbies and made adjustments to the way I enjoyed old ones with the result that I am able to enjoy life to the fullest despite the many physical limitations that have come about due to scleroderma.  I will go into these in more detail as time passes but I just wanted to make my point that life is good and it is so because of the choices I have made.