seeing red

As a quadraplegic we are more likely to suffer from bladder infections. There are many things you can do to help prevent these, including being sure to drink enough fluids. I remember hearing years ago how cranberry juice can help prevent bladder infections. Something in the cranberry juice helps prevent the bacteria from attaching to the walls of the urinary tract.

I came across this article that talks a bit more about it (link in 'helpful links). It talks about cranberries being used to prevent or treat UTIs (urinary tract infections). Worth a read.

tribute

I've mentioned before that I've got a fierce independent streak. As independent as I might be, I need people in my life, for many reasons. I want to dedicate this blog to one of the most selfless people in my life, my brother.

The place I moved into has a great balcony, but it wasn't accessible. There was no simple solution to change that. My brother and I both love the challenge of finding unusual solutions. Unfortunately, we have working styles that are polar opposites. Despite that and an insanely busy life, my brother gave me the time and effort to solve that problem.

Today I went out on my balcony by myself for the first time. I watered my garden. I picked tomatoes. I watched the world from above. I wondered how I could ever thank my brother properly.

slippery slope

If you use any type of transfer board like me (both wood, one for bed and one for the car), you may notice over time that sliding seems more difficult. Once you've eliminated the possibility that you've gained weight, you can blame the board.

A useful remedy is to treat the surface so it is more slippery. One easy way I happened upon by accident, is spraying it, or wiping it with Armor All or another car care cleaner. One day after cleaning my car seats with it, I nearly went flying as I slid out of my car. It really works!

One word of caution, if you get it on your hands, there goes your grip. That of course means pushing as you transfer is back to being hard...

keeping in touch

Whether you live alone, or spend any time alone, you're likely to face a scenario where you're going to need to reach someone. It might be that you've fallen, or you're simply stuck and can't get to your normal sources of communication. Trust me, it's something you want to plan for because when it happens and you can't reach help, you'll have plenty of time to wish you had planned.

There are many ways to do it, a cell phone that you always keep on you, one of those systems where you simply press a button and a call center answers, or the more sophisticated ones that can tell you've fallen without having to push any button. Shop around, because some of these can be pricey.

One of my problems has been that my cell phone does not work in my underground parking. That was taken care of by installing a 'phone repeater' which basically increases the signal strength in confined spaces.

Think about ways to deal with these kind of situations beforehand, and avoid having to swear at yourself with your loud outside voice...

distraction

If you're looking for something to distract you, here's something I heard about.... 'The Book of Awesome' and 'The Book of (even more) Awesome. In my 'helpful links' I put the page about #840, popping bubble wrap. Other awesome things listed on the cover include snow days, bakery air and finding money in your pocket. I haven't bought either book or the calendar, but I've seen the author interviewed. Based on on that, and what's on this link, it looks awesome (no pun intended) and I'll be picking up a copy.

Have fun being distracted...

another gadget

I put some plant pots on my balcony with various vegetables in them. One of those is a cherry tomato plant. Trying to pull off a cherry tomato, without dropping it it is near impossible. Then you've got to avoid running it over...yuck.

I found a new gadget. I took my pasta scooper (looks like a ladle with forked edges) and by placing the tomato in the scooper with the branch in the fork part, I can pull gently and the tomato stays in the scooper... most of the time.

kick ass

I don't care much for being given false hopes as I've mentioned in my earlier blogs. However, there are times when you are told 'no', and you need to not accept that answer.

I had my drivers' license before I was disabled. When I tried to get it again afterwards, I was refused the right to even take a test. Driving was one thing I wasn't going to give up without a fight. It took several months of going back and forth, with the help of an ombudsman, but I was eventually allowed to take the test. The driving examiner told me that if all his drivers were that good, his job would be an easy one. I'm still driving over 30 years later.

Sometimes you just know when the answer you get is wrong, and you've got to go out and kick a little ass.

understanding

Your friends, family and anyone else in your life will never totally understand the extra effort required for you to take part in life. But this doesn't mean you shouldn't try to help them understand to some degree.

For example, for me to get dressed and into my chair each morning can take almost an hour (hard to believe it was 20 minutes once, ahh, aging). Getting from my front door to pulling out of the garage in my car, when everything goes just right can be about 20 minutes. If people understand that, they know to allow for the extra time when planning to meet. If we don't share that kind of information, they aren't likely to think about it on their own.

It's not a case of looking for sympathy when you share this kind of information... it's just letting people into your life more completely...

signs

You no longer have the old indicators like pain that tell you are injured in some way. It's likely you have no normal sensation on a good part of your body. Your body however, still wants you to know when something is wrong and will find other ways to let you know.

Now these are by no means scientifically proven, but just my experience and that of some other quads. Examples are repeated spasms... it could be your leg that is having spasms for example, which might mean you have a toe squashed uncomfortably in your shoe. A warm almost mild feverish feeling might mean that you're sitting uncomfortably, or are feeling an impending infection. The weirdest one is sweating on your forehead, on one side only. This usually means something a bit more severe. Left side sweats mean right side injury, and right side sweats mean left side injury.

You'll learn to understand the signs that your body develops over time, and some will seem weird....

eagle eye

If you're fortunate enough to have your own place, you're going to have to be vigilant. At some point, someone you know, friend, family or an aide, will use something that you need, and put it away WHERE YOU CAN'T REACH IT. It's not because they don't care, or aren't aware... it's just not front of mind for them. It will happen, trust me. And when that moment you reach for that something comes, and it's not there, well that may be another inner voice time.

Try and be extra aware when you have company. Save yourself the grief.

another gadget

Dropping things on the floor is clearly the bane of my existence (well that and keeping sweaters tucked down in the back), and a while back a friend gave me an 'extending stick' that had a magnetic tip. This thing is great as it can reach pretty far and the magnetic tip can grab things like cutlery and even a can of tuna!

I've found one on line and put it on the links list so you can see what it looks like. It almost makes dropping things fun... almost.

pleasures

Sometimes when things are difficult, we look for huge solutions. What we forget is that the simple pleasures in life can really have a big effect. I recently moved to a place where I can have a BBQ outside on a balcony. I hadn't had that in 15 years. On the weekend, I spent some time with a friend setting it up, and had a simple meal cooked on the BBQ with a cold beer.

It tasted like the best meal ever.

safety

There are a few things you can do to lessen unnecessary risks when living in your own home as a quad, whether you are living alone or not. The day may come when you need help. It could be trouble with your door, having something you need but can't reach, or something more serious. Get to know your landlord, your neighbor or concierge. I recently moved in to a new place, and one of my neighbors came by and said if I ever needed anything, just to ask. She even gave me her phone number. The word spread in the building that I had moved in and everyone has been friendly and come forward to say hello or offer assistance. Even if I never need to ask for help, it's a great way to break the ice and meet new people.

Another important step is to let the local fire department that you are there. If there were a fire, they need to know that there are special circumstances, and that you may need help evacuating. As I learned in the Boy Scouts, be prepared.

gadgets

Gadgets, also known as Aides to Daily Living are very important in the life of a quad. You'll surely be suggested may 'devices' from your Occupational Therapist, and can find all sorts of neat ideas from catalogs. But some of the best and most useful ones that I have are ones I threw together quickly.

Probably the most important one I have, is my modified coat hanger. I took an old metal coat hanger (the kind you get from the dry cleaner) and stretched it out, with the hook at one end. You can bend the hook into a tighter "J" to give it more strength. If you've dropped something, or something is just out of reach, this can be a life saver. I keep 2 in my car, one in the bedroom and another in the kitchen. I'll try and post a pic soon.

juggling

If you're a new quad, you got a lot to juggle. Some of the things that may not seem important now might have consequences down the line. One thing I've noticed is that most quads I see have the fingers in their hand fairly open. In my case, they are more closed. Looking back, I remember that wearing the splints they gave me for my hands was very uncomfortable. I remember constantly taking them off, and not getting much resistance. Actually, maybe I did get resistance and just don't remember. Maybe I was just being my stubborn old self.

What I have now are hands that are tighter than they should have been. I'm not sure if I'm better off or worse off because of it, but I do know it would have been good to understand my decision and it's repercussions. So, no matter how trivial something you do might seem now, be sure you understand both sides to the decision.

Hands down, it's the right way to go :)

links

You may notice that I added a section to the right called 'helpful links'. Any time I find something relevant to my topic that might be useful, I'll add a link. I've put in a few from past topics and will add more. If you have any to suggest, feel free to do so!

regular maintenance required

I'm writing this sitting in the x-ray dept waiting room. Six weeks ago I broke my leg when I fell getting into my car. I'm here to see if it's healed and the cast can come off today. It's the second time I broke my leg, the last time was in 86. To this day I don't know how I did it the first time.

I'm 35 years into my life as a quad. I have regular bone density tests (sort of regular), as we quads have a tendency to have weak bones, particularly in our lower body. I take medication to strengthen my bones and try to take lots of calcium and vitamin D. I do this even though I still see myself as indestructible in many ways.

The reality is that I'm going to continue pushing my limits, and I'm sure I'll fall again. I don't know how to live any other way. But I'm going to have to acknowledge that I'm getting older, and that it just makes good sense to keep the body in the best working order possible.

*postscript: the cast has been removed :)

release

Your life is packed with extras, and I hope for you that they are mostly positive in nature. You will likely find some things take their toll on you, both mentally and physically. I highly recommend that you find a way to deal with that, a way to release that pressure. Each of us has a way which will work best for us. Find yours, be it some form of psychotherapy (my preference is art therapy), a good workout in the gym or sharing your thoughts with someone special.

I'm not big on cliches, but keeping it bottled up really isn't good.

heat wave

It's that time of year here, when the temperatures can and are getting pretty hot. Since my blood doesn't circulate as well, my body isn't able to regulate it's temperature as well as it needs to. This means I have to be extra aware of my body's temperature. This advice is based only my experience, and not meant to be professional medical advice.

When I've gotten so hot that I can barely function, I find putting cold wet towels on my body can help. There are spots that I find have a bigger effect, like the side of my neck under my ear. A wet towel around the neck can be great. You may find other spots work for you. I've also found that if I burn myself, keeping a cold wet towel on the burn can have a dramatic effect on the burn. Be sure and keep the towel damp and leave it on 10-15 minutes.

Meanwhile, enjoy the weather, and be careful when you're around sources of heat :)

limits

As you 'grow' into your new life, you'll find there is no road map. What you can and can't do will only become clear as you test your limits. Sometimes pushing yourself may hurt.

A few years into my disability I went on a canoe trip, where there were 4 quad and 4 non-disabled participants. Things were carefully planned, and having had my own canoe in the past I was excited. But we weren't prepared for a storm that came in overnight. We got caught in a heavy rain storm and the temperature dropped quickly. When we made it back to the main camp, I huddled close to a small heater in the cabin. What I didn't realize, is that although I was cold and wet, while leaning on the heater the heat was going through my heavy sweater and burning my arm. The next morning I woke up with 3rd degree burns on my arm. Looking back on it, what I remember is that I survived, and was proud that I tested my limits.

And it makes for a great story :)