Friday, February 27, 2009
"Shades" of spring?....
So the sun is finally showing itself and It's warmth is most welcome. As a result of the loss of my driver's license, I am on foot alot of course. Fortunately, we don't live too far but it's all down hill and icy for the most part. My depth perception isn't great anymore so I try to time my walking for the days that there is no fresh snow. I'm grateful to have the option of walking to town for errands and exercise and it enables me to have more independence than I might other wise have. It has been a long wait for ice free sidewalks but we are getting nearer and I have walked to town on a couple of occasions in the last week on days that were brilliant and sunny. Stunning to be exact. The sad fact is that I realized this week that my eyes have become so light sensitive that I am rendered helpless at times...especially when looking up to access where the crosswalk is to cross the street. I watch the ground on every step as I have enough central vision to carefully monitor each step but am unable to look straight ahead without falling, tripping or stumbling. Consequently, when I do look up the sun hits my eyes and I can no longer see..at all. I was stopping at cross walks and could hear the vehicles stopped but couldn't leave the side walk to cross until I could see. I quickly realized I must stop well before the crosswalk as to allow my eyes to adjust and then approach the cross walk to cross the street. Not the end of the world for sure, but the very first time I have felt completely vulnerable on my own...and THAT was unsettling. I am going to have to start using my new cane and may not be able to wait for training. The CNIB is in Prince George and only comes to us so often and I need to stay mobile and active and as independent as possible. I will muster the fortitude to take matters in hand and use the cane to the best of my ability. I have some concerns a bout the amount of attention drawn to me as a result of "going public" with the cane. I don't care at all what anyone "thinks" of me or my need for the cane. I just don't enjoy public attention. We live in a small town and I fear the possibility of spending much of my time trying to explain why I have the cane in the first place....such is my life right now and in the name of independence and an attempt to squash my social anxieties, I will deal with it. There is also the need for proper sun glasses and perhaps hats to shield my face from the blinding glare of what has always been the highlight of my day...the sun...It's what raises my mood, energizes me and beckons me outside at times that I might otherwise have been less active. Now I'm almost hiding from it's blinding effect. Hmmmm...another new change and adjustment. OR..perhaps a fashion statement and opportunity to shed a semblance of pride or vanity...guess it all depends on how I choose to look at it.
Saturday, February 7, 2009
Less and less vision..more and more opportunities..
Retinitis Pigmentosa has most certainly changed my life..I can now explain many changes that took place many years ago. We just didn't understand what was happening or why at the time. It's interesting how we label ourselves based on what we are told. I have always been labelled as "too sensitive", "anxious" etc. There is a measure of truth to those titles but much of my anxious behaviour and hypersensitive startle reflex (among other things) I now know was a result of poor peripheral vision. I just didn't know when things were going to happen because I didn't see them coming. Driving was a prime example. I kept telling my husband that I was making some serious enemies on the road and had no idea why. We came to the conclusion that I was just a "nervous driver" (inferring that I was bringing it upon myself..if I would just relax everything would be fine..). Oh I was nervous alright..because it took me so long to feel the intersection was clear that other drivers would become impatient and so I would just go..sometimes safely, sometimes not.Once again, not having a good visual field. As a result of these assumptions I believed, I often said and lived these personality traits as if they were a fact of life..and so they were. Imagine how freeing it was to be told that my limitations had absolutely nothing to do with my personality or "weakness"..accept that I had believed them. Who would have thought that going blind could open so much vision....
Retinitis Pigmentosa has been rapidly disarming my retinas over the past year. Following is a brief explanation of the condition for those who are not familiar.
Retinitis pigmentosa (commonly referred to as RP) is a progressive group of inherited eye diseases which are characterised by degeneration of the photosensitive cells in the retina of the eye which perceive light and colour. These cells are called the rods and cones.
RP is a major cause of blindness in people under the age of 60, and affects millions of people worldwide.
The onset of RP may begin in childhood, but may not detected for many years. The disease usually begins in the rods, which are responsible for peripheral (side) and night vision. If left unchecked, the patient will be left with tunnel vision and will just be able to see what is straight ahead.
Among the symptoms of RP are:
Difficulty seeing in places which are dimly lit, or difficulty seeing in the dark.
Loss of ability to make out colours.
Decreased central vision.
Loss of peripheral (side) vision.
How is it diagnosed?
People at risk from retinitis pigmentosa can be given an eye examination called an ERG (electroretinogram). During this procedure, the eye response to a light stimulus is recorded. If RP is present, the ERG will show decreased signals from the rods and cones, but particularly from the rods.
How is it treated?
There is no treatment for retinitis pigmentosa, and no way to halt its progression either. The sad fact of the matter is that many people who suffer from RP will be legally blind by the time they are 40 years old, even though they may still have enough vision to walk unaided. However, they will be unable to drive a car, operate machinery or read for long periods due to the deterioration in their peripheral vision.
Can RP be prevented?
There is no way to prevent retinitis pigmentosa. For some forms of the disease, however, the gene which causes it has been identified. Where there is a history of RP in families, or where one person in a relationship suffers from the disease, genetic counselling should be sought in order to assess the risk factors of children inheriting the disease
It is thought that Vitamin A supplements in certain forms may delay the symptoms of PR. It is also very important to protect eyes from blue light which is more damaging to the eye than UV rays and can cause glare which can be very uncomfortable to individuals with RP.
What is the prognosis?
Unfortunately, the prognosis for people suffering from RP is not very positive. The vast majority of people who contract the disease will end up losing most of their vision, and will be classified as legally blind even though they may retain sufficient vision to enable them to see straight ahead.
However, much research is being carried out into the possible causes of retinitis pigmentosa, and this may eventually lead to a better understanding of the disease - and perhaps a cure - at some stage in the future.
My own discovery of RP has been enlightening, disconcerting and somewhat surreal. This is still a very new situation for me and in a few months time, my life has changed drastically. I am no longer employed, have been told not to drive, been assessed as "legally blind" and recently recieved my very first white cane...I do still have quite a bit of vision centrally but it isn't terribly clear. My peripheral vision is very limited. I find the times that I'm most frightened for my future is when I'm in dimly lit places. This is when the reality hits home. I no longer see definition in people's faces in dim lighting..I'm grateful that I still recognize people though.
The emotional challenges have been mixed. I was shocked to hear the diagnosis and what it suggested in regards to its' impact on my future. I was frustrated and disappointed to be told (on the phone no less)that I had a progressive eye disease and was going blind without any question of my support system, living arrangement or coping skills. I was literally "informed" and dismissed..albeit politely. I am a survivor of severe mental illness and have been well for a number of years. I'm coping very well..thank God..but they didn't know that. I have been in contact with the Canadian National Institute for the Blind and they are a wonderful resource. The amount of adjustment and information is potentially overwhelming but I have lots of time now and have no desire to sit and wait to go increasingly sightless. There are some things I can not control..but there are MANY I can. Now is a time for learning and practicing. A time for many choices..what to train for, how to improve my life while I still see, learning typing, adjusting to changes in communication and mobility, learning to adjust to people's reactions to my diagnosis. I'm interested to note that my husband is "waiting for me to accept this and fall apart.."hmmm..not on the schedule..at least not in the forseeable future. Is that mandatory?! There I go, changing the rules again! haha..I do understand his concern and he is most supportive..I just don't feel I'm in denial. I'm open to the suggestion, I want to protect my mental health more than anyone..I have a dear, dear friend who cries when she thinks of my situation. I love her for that..but I have warned her..if she's gonna be with me, I can't manage a cane, be blind AND hug her..we won't get very far!! haha!
So this is the beginning of a new beginning..I'm as interested as anyone to see how it all comes about. Now I'm going to call a wonderful woman I met at a CNIB meeting this week because we're starting a White Cane support group in our city for the first time ever..she's blind too and inspirational. Those are the people I want around me. Not sure I can keep up, but it's better than sitting around!
Retinitis Pigmentosa has been rapidly disarming my retinas over the past year. Following is a brief explanation of the condition for those who are not familiar.
Retinitis pigmentosa (commonly referred to as RP) is a progressive group of inherited eye diseases which are characterised by degeneration of the photosensitive cells in the retina of the eye which perceive light and colour. These cells are called the rods and cones.
RP is a major cause of blindness in people under the age of 60, and affects millions of people worldwide.
The onset of RP may begin in childhood, but may not detected for many years. The disease usually begins in the rods, which are responsible for peripheral (side) and night vision. If left unchecked, the patient will be left with tunnel vision and will just be able to see what is straight ahead.
Among the symptoms of RP are:
Difficulty seeing in places which are dimly lit, or difficulty seeing in the dark.
Loss of ability to make out colours.
Decreased central vision.
Loss of peripheral (side) vision.
How is it diagnosed?
People at risk from retinitis pigmentosa can be given an eye examination called an ERG (electroretinogram). During this procedure, the eye response to a light stimulus is recorded. If RP is present, the ERG will show decreased signals from the rods and cones, but particularly from the rods.
How is it treated?
There is no treatment for retinitis pigmentosa, and no way to halt its progression either. The sad fact of the matter is that many people who suffer from RP will be legally blind by the time they are 40 years old, even though they may still have enough vision to walk unaided. However, they will be unable to drive a car, operate machinery or read for long periods due to the deterioration in their peripheral vision.
Can RP be prevented?
There is no way to prevent retinitis pigmentosa. For some forms of the disease, however, the gene which causes it has been identified. Where there is a history of RP in families, or where one person in a relationship suffers from the disease, genetic counselling should be sought in order to assess the risk factors of children inheriting the disease
It is thought that Vitamin A supplements in certain forms may delay the symptoms of PR. It is also very important to protect eyes from blue light which is more damaging to the eye than UV rays and can cause glare which can be very uncomfortable to individuals with RP.
What is the prognosis?
Unfortunately, the prognosis for people suffering from RP is not very positive. The vast majority of people who contract the disease will end up losing most of their vision, and will be classified as legally blind even though they may retain sufficient vision to enable them to see straight ahead.
However, much research is being carried out into the possible causes of retinitis pigmentosa, and this may eventually lead to a better understanding of the disease - and perhaps a cure - at some stage in the future.
My own discovery of RP has been enlightening, disconcerting and somewhat surreal. This is still a very new situation for me and in a few months time, my life has changed drastically. I am no longer employed, have been told not to drive, been assessed as "legally blind" and recently recieved my very first white cane...I do still have quite a bit of vision centrally but it isn't terribly clear. My peripheral vision is very limited. I find the times that I'm most frightened for my future is when I'm in dimly lit places. This is when the reality hits home. I no longer see definition in people's faces in dim lighting..I'm grateful that I still recognize people though.
The emotional challenges have been mixed. I was shocked to hear the diagnosis and what it suggested in regards to its' impact on my future. I was frustrated and disappointed to be told (on the phone no less)that I had a progressive eye disease and was going blind without any question of my support system, living arrangement or coping skills. I was literally "informed" and dismissed..albeit politely. I am a survivor of severe mental illness and have been well for a number of years. I'm coping very well..thank God..but they didn't know that. I have been in contact with the Canadian National Institute for the Blind and they are a wonderful resource. The amount of adjustment and information is potentially overwhelming but I have lots of time now and have no desire to sit and wait to go increasingly sightless. There are some things I can not control..but there are MANY I can. Now is a time for learning and practicing. A time for many choices..what to train for, how to improve my life while I still see, learning typing, adjusting to changes in communication and mobility, learning to adjust to people's reactions to my diagnosis. I'm interested to note that my husband is "waiting for me to accept this and fall apart.."hmmm..not on the schedule..at least not in the forseeable future. Is that mandatory?! There I go, changing the rules again! haha..I do understand his concern and he is most supportive..I just don't feel I'm in denial. I'm open to the suggestion, I want to protect my mental health more than anyone..I have a dear, dear friend who cries when she thinks of my situation. I love her for that..but I have warned her..if she's gonna be with me, I can't manage a cane, be blind AND hug her..we won't get very far!! haha!
So this is the beginning of a new beginning..I'm as interested as anyone to see how it all comes about. Now I'm going to call a wonderful woman I met at a CNIB meeting this week because we're starting a White Cane support group in our city for the first time ever..she's blind too and inspirational. Those are the people I want around me. Not sure I can keep up, but it's better than sitting around!
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