My Disability

By creating this page, I'm not looking for your sympathy, rather, just trying to give a little insight into my disability. It took me about 4 years to say it, but now I openly declare that I am disabled. Another word for disabled in this context is handicapped, so take your pick, as I'm comfortable with either word when describing myself.

Keep in mind that what I'm about to tell you is through years worth of doctors telling me, or me overhearing, little bits of information here and there so please excuse me if I'm a bit vague in parts. The same goes if I explain it TOO MUCH or I get it wrong. 8-[) You see, ever since the boxing accident, doctors have been a bit reluctant to tell me everything, whether it be because they think I won't understand or because they think they're protecting me from the truth. Some doctors know that I'm fairly intelligent so they tell me what THEY know, but a doctor can't know everything about a disability, so I have listened to what a number of medical people have said. This includes: Medical/General Practitioners, Chiropractors, Neurologists, physiotherapists, speech pathologists, occupational therapists and Surgeons. What I have done is searched the 'Net and found pages that explain MOST things in a little more detail.

Diagnosis

What started it all was that I had 3 acute subdural hematomas (or haemorrhagic strokes), all in the space of about a week, as a result of a boxing match in 1991. As a direct result of the hematomas, I now have right side hemiparesis, with a hemiplegic gait, and although I've never been officially diagnosed with Parkinson's disease, I have the symptoms of parkinsonism: Bradykinesia, tremor and (cogwheel) rigidity. Due to complications after the 3rd haemorrhage, the surgeons put a tracheotomy in my throat so that I could breathe without using my nose or mouth. I have been told that the nerves in my brain that control my right hand side aren't dead, they're "asleep". Whether that means that one day they might "wake up" I'm not too sure, but it would be nice. 8-[) Possibly, my greatest 2 hopes that I will one day be "normal" again, lie in stem cell therapy, and something that I saw on TV a while ago where they were putting microchips in animals brains that control the affected nerves. The first one, stem cell therapy, is a long way off being improved to a point where it will make a difference to me, and as for the second, I only ever saw that once on TV, and haven't heard anything more about it. But if they ever needed "guinea pigs" in the form of humans, my hand would go straight up to offer myself to ANY experiments that they wanted to do. 8-[)

The Problems

These are the things that were affected by the haemorrhages, and the reason why I struggle with my everyday life.

Just before I get into this section, I have to explain something to you. Back when I was in rehabilitation, I was with my physiotherapist trying to walk on the parellel bars, where I would step with my left leg and she would pick up my right leg and carry it through, when another physiotherapist saw me. She came over, took me away from the parellel bars, held my hands whilst facing me and told me that she was going to walk backwards and that I was to follow her. I thought she was crazy!!! But she did... and I did. It turned out that I could walk with momentum, meaning that if my left leg took a big enough step, with momentum my right leg could swing through. Of course not even this would have worked if I didn't lift up on my left foot to give my right leg that little bit extra room to clear the ground. After that was established, I found out that I could run better than what I could walk. Go figure. The physiotherpist who done this was Jenny McGinley, and after my then physiotherapist left, Jenny became my physio. Thank you very much Jenny, if it wasn't for you, maybe the doctors would have been right in saying that I would never walk again.

Right arm:

My right arm is slow to move on its own, so when I need to move it I usually use my left hand to grab it and put it where it needs to be. Just like I can walk with momentum, my right arm moves better with momentum. If I'm sitting still and try to move my right arm, I can do it, to a point, but there is a lot of tremor and it's very slow.

When I do try to move my right arm/hand/fingers, there's a fair bit of tremor. My right arm shakes often, but it's more pronounced when I'm attempting something difficult (like moving my right arm) and also when I"m nervous. Sometimes when I'm not trying to do something hard, and my arm is shaking, it will ache; to a point where I need to use my left hand to steady my right arm and move it around.

The fingers on my right hand have a tendency to curl up on their own accord, so when I need to hold something with my right hand I have to use my left hand to open my fingers. I can close my right hand into a fist easily enough, just trying to open it is where it's difficult and the tremor starts. A good example of that is when I go to shake someone's hand; I open my right hand with my left hand just before I'm about to shake hands, and if the handshake isn't straight away I usually stand there with my left hand keeping my right hand open until the shake takes place. Otherwise, my right hand will close back up, and I'll just have to repeat the process. So if I meet you for the first time, and I'm standing there with left hand seemingly inside my right hand, I'm simply just waiting to shake your hand. 8-[) Also, some people don't understand that because I can't open my right hand, when I'm holding things in both hands, and I need to give the person the thing in my right hand, I can usually bring my right hand up so they can take it, but they have to "force" it out of my hand. But some people get it straight away and do it. With all that said, since about 2003 I've been trying to fall asleep every night with my left hand "inside" my right hand to open it up and try to loosen up the muscles. It seems to be working because my right hand takes a lot longer to fully curl up, and as long as it isn't too far curled up, I can open it (somewhat) without assistance from my left hand.

Right leg:

My right leg is noticably slower and harder to move than my right arm. With momentum I can move my right leg, but standing still, NO CHANCE. There is an exception to that, and that's when I feel a sudden sharp pain (from outside my body, I don't get pains in my leg for nothing) I can lift as high as need be to "escape" whatever is causing the pain. That's also part of the reflex action I'll describe later on this page.

While there is tremor in my right leg, it's MAINLY when I'm standing and when I'm nervous.

My right knee "blew out" on me around late 1992. I say blew out because that's the best way I can describe it. I started to notice that my knee was locking up as I straightened it when walking, then after about 6 months of painful walking, the pain stopped and I was left with a dodgy knee. Now it's MAINLY when I run, but it is still a problem when I walk. What happens is that when I land on my right leg and then go to take off, the right knee straightens out and I find it very difficult to bend it to bring it back forward to continue the stride. So I end up being able to bring my right leg only half way before I'm ready to take off on my left leg. So now, I can walk better than I can run. 8-[) That's my biggest problem, my right leg. If I had full movement of my right leg I'd be able to walk and run better, therefore be able to exercise more effeciently, therefore lose weight quicker.

Head and neck:

First thing to mention about my head is a slight lean to the left in my neck. Because the muscles are weak my whole head tends to lean to the left. I have a few theories as to what causes it, but no real solution. Although, I have been seeing a chiropractor about that, and other things.

The weakness of the muscles/stiffness in my neck also means that I can't nod/shake my head adequately enough to indicate a yes or no answer. This becomes a major problem when I'm ordering something in a store and the person asks me question but is just a little too far away to hear me. I try to nod/shake my head hoping that my facial expressions will suffice as an answer, but usually just either give a thumbs up (for yes) or wave my hand (for no). Some people understand that, but then some don't.

Because of the right side hemiparesis, the right side of my face is weak, which causes problems to my speech. I can talk, and I am understandable, but if you're listening to me, you just have to be patient. I find it extremely difficult talking on the phone to a person with whom I've never met, especially if english is not that someones first language. Some people either don't have the patience, or they don't understand me and hang up on me before I'm even finished my first sentence. That is why I don't like talking on the phone to someone I've never talked to before. If I have talked to them before (either on the phone or in person) and I've ascertained that they can understand me then I don't mind talking to them on the phone. Of course there are situations where I HAVE to call someone who I've never had contact with before and then I just pray that I get someone nice and who is having a good day. 8-[)

My mid section:

My lower back is a problem in my mid section, as I do get a lot of pain there. The pain I get in my back is NOT constant, it only occurs when I'm doing something where I lean forward just a little bit for an extended period of time. This GENERALLY only happens when I'm doing things like washing dishes, vacuuming, walking, etc. Things where there is a slight bend in my back. With walking, I find it the hardest to walk up hills, but also on flat surfaces. When I go to the gym, I can walk on the treadmill for an hour or more straight without back pain because I can hang on to the treadmill and keep myself straight. The longest I've walked on the treadmill is about 4.4 miles/7.1km. That was continuous, without a break. Some people will be reading this saying "is that all???", but let me tell you that for me, that's pretty impressive. The most I could probably walk on the street, continuously, is about 2 mile/3.2km. That's without walking up any hills.

Possibly the biggest problem with my mid section, at least in my eyes anway, is my diaphragm. Once again, my diaphragm is weak, therefore I find it hard sometimes to get the air to talk. To open up my diaphragm, I lean back when I talk, which allows me to talk at a volume where people can hear me. If I stand straight or if I'm sitting down, I can talk at normal volume, just not for long. Just until the last of the air is used up, then I talk really softly. Other things I can do to talk at an acceptable level is to tuck my knees up to my chest and also just after I've had a drink of Coca-Cola. I'm sure it would work with other types of soda/pop/soft drink, but I only enjoy Coke.

Let me just clear something up, right now. I CAN get an erection. The reason why I put that out there is because a number of people in the past have asked me if I could, and I think it's a legitimate question, so I thought I'd answer it.

Difficulties and Complications

Running is a very hard thing for me to do. Because of the right knee problem, I can't lift the leg enough to swing it through to continue running, which makes my left leg compensate and therefore puts a lot of strain on my left leg. If I could have any of the three major "problems" (right leg, right arm and speech) back to normal, it would most certainly be the leg.

Sit-ups are something I just cannot do. It's hard for me to get off a sofa/lounge without a struggle, which is why I tend lay down when I'm home, because it's easier for me to push myself up with my left arm then when I'm sitting up, I'm on the edge of the seat, and can stand up easily enough.

I can't climb over anything above waist height.

I CAN drive a car, but it has to be modified with a spinner knob (so I can turn the steering wheel), an indicator changer (a metal rod that clips onto the indicator goes up and over the steering column and meets up with the spinner knob so I can use the indicator) and a left foot accelerator. That's something that was put on my license by an occupational therapist, but I don't REALLY need them as I have driven a car without them. 8-[)

Anything that needs to be done with 2 hands is either slow or I cannot do it. Just a few of things that I CAN do that take a bit of time are:

Tying shoelaces: I have to open my right hand with left hand, put the left shoelace in my right hand, then make a bow with the right shoelace with my left hand. Then I loop the bow around the straight left lace and swap hands so that the bow is now in my right hand and the straight left lace is in my left, and pull tight. I used to make 2 bows and then loop them around each other, but I found that just by making the one bow, I could shave off some time. As it is, to put my shoes and socks on takes me about 5-6 minutes.

Putting pants on: I like to be sitting down to get my pants on. Whilst I'm sitting I use my left arm to grab my right leg and bring it up over my leg (so my legs are crossed) then loop my jocks and pants over my right foot (jocks first, then pants). This is quite basic and can be done easily enough depending on how dry my legs are. Because I mainly get dressed just after a shower, I find that if I dry my legs TOO much, then my right leg tends to slide off my left leg a couple of times before I have got my jocks and pants on my right leg. But if I leave my legs a little damp (not exactly wet, just not thoroughly dry) then my right leg sticks a lot better to my left leg.

Opening a bottle/jar: If I have to open a bottle or jar (which as you might expect happens a fair bit) I open my right hand with my left hand, put the object in my right hand, wait a second or two until my right hand has properly closed around the object, then open the top with my left hand. After it has been opened I take it out of my right hand with my left hand.

Of course there are plenty more, but it's hard to think of things that are difficult to do because I don't really notice the amount of time that things take me. A side effect of being disabled for 20+ years. 8-[)

The UP Sides

All the reflexes in my right side are still there and active, and I can do incredible things (I call them incredible simply because I can't normally do them but abled bodied people will just think it part of life) with reflex actions. For example: If someone was to tickle me unexpectedly, if need be, my right arm would move quite quickly to stop them. Yes, I'm ticklish. 8-[) Also, if need be, I can move quite quickly in times of an "emergency".

I have feeling in my right side, it's just a different feeling to the left side. That goes for both pain and just a simple touch. If someone was to touch my left or right side, then touch the other side, the two would feel totally different. But the closer you get to the center of my body, the more the sensation is the same. I got a tattoo on my right fore-arm, and because of the different sensation, it didn't hurt as much as the tattoos on my neck and lower back. Don't get me wrong, it still hurt, just not as bad as the others. 8-[)

I lead a totally independent life. I (can) live alone, dress myself, do my own housework (not very well but it gets done), manage my own finances and just generally live the life of a normal person, but for a few difficulties.

Conclusion

Just because I'm disabled, does not necessarily mean that you have to treat me different than anyone else. If anything, you might have to be a little patient as I tend to move and talk a little slower than a "normal" person. There a couple of things that I really don't like people doing to me, and those are; when they talk to me they purposely slow down because they think somehow that I am going to understand them better. I also don't like to be patronized or "talked down to". What I mean by talked down to, is when some people talk to me they have that tone in their voice where they're just assuming that are far more intellctually superior than what they really are. Half the time I know I could match them intellectually any day of the week. The other I don't like is being laughed at. This happens more than you might think, and I don't mean if I do something that warrants laughter, I mean just because of the way I look/move/talk. I often turn to see people giggling to themselves, or amongst their friends, and when they see me looking at them they quickly try to turn away. I'm not stupid, I know the difference between when someone is laughing AT me and when someone is laughing WITH me. All the things I just described happen so frequently that if I was to react to every instance, hospitals would be inundated with stupid people. But fotunately, I know better. That right there is why I love America; they all treat me as an equal or like an "average Joe", something which I don't get in Australia.

One thing that frustrates me more than anything else is the fact that I have an above average IQ, but that my body lets me down. There are some things that I KNOW how to do, just can't because of physical limitations.

I don't claim to be the only disabled person in the world because I did spend quite a bit of time in rehabilitation and saw all kinds of different disabilities, so I know that there other people out there in a worse situation than me. This page was written from ONE person's perspective... Mine. A very good friend of mine is in a wheelchair and can't walk at all, and he does everything (as far as I've seen) for himself. I hope you don't mind me using you as an example, Zsolt. There is not really much difference between a disabled and abled bodied person; they're both human. So the next time you see a disabled person, you don't need to be patronizing or rude, just give a little smile, and ask them how they're doing. That's not TOO hard, is it???

Thank you very much for reading the entire page, it means a lot to me that you took the time.