Lost my eye sight on Jan 2, 2020 and thought I'd talk about my experience.

When I woke up on January 2nd I was virtually blind only being able to distinguish between dark and light. As you might imagine this was not a good start to my day.

I figured that I needed to get washed, shaved and get dressed and then get myself downstairs which I did albeit with some difficulty. At first I had to find the bathroom and I managed to miss the door at first try but after taking a wee while to steady my nerves I made it into the bathroom as I'd been trying to get into my attic.

I was able to shave (with an electric razor) and then get myself washed. I also needed to pee but found I needed to sit down to do so as I couldn't see the toilet.

On my way back to my bedroom I also managed to miss the door and ended up in one of my other bedrooms. It did take me a while to figure out where I was and to retrace my steps to find my bedroom. When it came to putting on my trousers I managed to miss one of the legs and fell onto my bed but eventually managed to get them on.

My next major issue was to get myself down the stairs. I knew by this time that was going to be problematic so I ended up taking tiny wee steps till I could find the wall and then holding out my arms I was able to find the banister rail. I then moved very slowly to position myself at the top of the first step. Once I'd got that I was able to get down just fine as I knew it was 7 steps then 1 step and then 7 more steps to get to the ground floor. I think if I hadn't known that I'd likely have had more problems.

Anyway...l once again missed the door but this time into the kitchen and so I ended up in the living room and again had to retrace my steps. I thought the first thing I should do was take my morning medicine (oral) but found I couldn't figure out how to get them out of the blister pack. I also concluded that I wouldn't be able to read my blood glucose reading which also meant I couldn't take my insulin injection.

And so I decided I would be best to get to my office and sit down at my desk and decide where to go from there.

And so I once again managed to lose myself and ended up in my dining room and it took some time to recognise where I was. I figured it out as I could feel the chair back and knew the only chair with a curved back was in the dining room. So getting turned around I made my way to my office but also managed to get into the small porch to the front door (sigh). I then managed to get to my office and got sat down at my desk. Needless to say the first thing I did then was to have a cigarette but of course that was also an issue as I couldn't see the flame from the lighter. I eventually managed to light it albeit half way down the cigarette but a few puffs did calm my nerves.

So now it was time to take stock and decide what to do. Of course it quickly became obvious that I was in some trouble as I couldn't look up a number to phone for help. Thinking about this I decided the best bet was to dial the emergency number and ask for an ambulance. Now in Canada the emergency number is 911 whereas in the UK it's 999. This means I had to locate not only the 9 but also how to navigate to the 1 to complete the call.

Several attempts later I somehow managed to dial 0 for the operator and by luck it was the Bell operator I got and when I explained my difficulty she was very helpful and got me through to 911 and stayed there until I got the operator to ask for an ambulance.

So I explained about losing my eye sight and explained I needed an ambulance to get me to emergency but it wasn't life threatening so no need for a siren.

In around 5 minutes the ambulance arrived and I had already opened the door to let them in. They then guided me down the stairs and into the ambulance. I was able to tell them what medicines I was taking and told them I had taken no medicine that morning.

Anyway they got me to the hospital where I was put in a wheelchair and wheeled into emergency. The staff there asked me various questions and did the usual quick tests like taking pulse, blood pressure and temperature and asking me questions like name, data of birth, etc. and I was able to produce my health card. They quickly ruled out a stroke and then did an ultra scan of my eye.

They decided I needed to see an eye specialist so they arranged a taxi to take me to see the one on call. I think it was a Dr, McMann. I can say that it was a very weird experience being driven in the taxi as half the time it felt the car was going backwards and some of the time it felt that we wee diving into a wall. Anyway we arrived safely and the taxi driver was very good in that she walked me into the practice and up the lift. The nurses there were very good and kept telling me what was happening. Clearly I couldn't see anything so it was reassuring that they kept me informed.

Anyway... after some time I was taken in to have pictures taken of my eyes and that was the first time I actually walked into something. The nurse apologized and said she'd forgotten about me not being able to see.

So after that I got to see Dr McMann and he told me that my retina was in good state and there was a chance that after a couple of days the blood would likely clear from my eye and if not they could give me an injection or I could see Dr Gondar in London for an operation. I was told to see Dr. Anjema on Monday. That said I was to be sent home by taxi. The nurse told me she had advised support people that I would need help at home and someone would be in touch.

And so the same taxi driver that took me there picked me back up and took me back to my home and walked me up the stairs and waited until I'd got the door open.

SO that was my first morning and early afternoon.

The rest of the day was long and rather boring. I managed to make myself a sandwich and had a glass of orange juice. I also managed to switch on the TV and somehow get a news channel to listen to and so that was my first day done and dusted and managed to get to my bed.

The second day.

It was a real blessing that a person from North Carolina phoned me as she'd emailed me on a number of occasions and always got a reply the same day so when after two days I hadn't responded she thought she'd phone to ask if everything was OK.

It was at that point that everything started to happen as when she found out I'd lost my eye sight she asked if she could help. I did tell her that I'd been told someone would call at my home to help but no-one had turned up and she swung into gear and not that long after people started to come to the house and phoned and soon I was getting lots of help.

She wishes to remain anonymous and I respect that but must say she was a huge help and phoned twice a day for the next six weeks or so to check on me.

Anyway the first person to call was someone to assess my needs and while there she decided to move my table and rug from the living room as she said it was a trip hazard. After that I got a personal assistant coming in twice a day and a diabetic trained nurse visited on a regular basis. While she was there on the first visit she helped me to take my oral medicine and also helped me do a blood text and helped to setup my syringe with the appropriate units of insulin. She also helped me to check my online bank accounts and to pay a bill.

The personal assistants came from Bay Shore and would help me take my medicines and also take my blood glucose readings. I had to prick my own finger and squeeze out a drop of blood and they would then guide the wee plastic strip to take the blood sample and they could then tell me my reading and then I was able to calculate what insulin to take and inject myself. They dialed up the number of units.

They would also cook me a meal. So in the morning I would get my breakfast and in the evening i got a dinner. Some of them were able to do some grocery shopping for me and also pick up some food from a fast food place.

Of course not everyone could make me a meal but they would try. One woman said her husband made all their meals as  he was a chef so all she really needed to do was boil an egg or other very basic meals. 

As I also had issues getting cash to pay for things I managed to get some cash when my regular cleaning lady came as I always give her a cheque and she always deposits that in her bank the same day so i asked  if I could add $200 to the amount and would she take that in cash for me and she was happy to do that for me and popped in later the same day with the cash.

The Red Cross also have a system where anyone that went to emergency were offered 10 hours of support services and some free microwave meals. Of course the microwave meals were an issue as I couldn't read the box to see how long I had to cook them for.  It might be useful if they only got meals that were all the same time to cook. One problem was with the desserts where she put them in the Fridge rather than the freezer. So when it came to cook them the one overflowed as it was meant to be cooked from frozen and so that was another cleaning task for my personal assistant.

On the whole five days a week were covered by the same person but others came only once. So I got to meet lots of people both young and not so young. A couple of them were able to give me a little help with my web site as well.

The two main helpers I got were Matthew (Matt) who came at 8.00 am and Cassandra who came in the evening.  It was Matt that got Alexa to read me a book on my Kindle and helped me get a couple of brief newsletters out.  Cassandra helped me to order Groceries online and would pick up a Fish Supper on Tuesdays.   As well as that they would take out the rubbish for me and Matt helped me to put braces onto a clean pair of trousers.

Between my Doctor and the support diabetic nurse they changed my oral medicine and insulin to new products and after a wee while things got better. Like I stopped the two insulin's I used to take and now only take one and that means I only need one injection per day instead of three or four. They also arranged for me to receive a new blood glucose meter which uses a patch on my arm so no need to prick my finger any more. As I had sight issues this is covered by OHIP

I might add that when your oral and insulin regime is changed this is perhaps not the best time to change as you need to be careful on how you go about taking your medicine.  In fact a couple of times I opted not to take my insulin as I felt I was too low to chance it.  On the old regime I could take short acting insulin to correct a problem reading.

And I might add the diabetic nurse, Catherine, from Bay Shore with an abundance of caution moved my short acting insulin to another shelf in my fridge right at the back so all I knew was it went missing.  I did suggest that this was theft and she then told me where she'd put it.  I think this was because I had indicated that if I stayed blind I'd likely take a large dose of that insulin and thus put me out of my misery.  She did make regular visits to me to check all was ok with my insulin.  She was also responsible for getting me in touch with Heather who is the main diabetic nurse for my family medical practice and it was she that make the change to my oral and insulin regime. Not once was I able to talk to my doctor as I did have serious concerns over changing my insulin regime.

It is taking a wee while for this to settle down and for me to adjust my methods as I no longer take short acting insulin. However this also means with the new long acting insulin I can take it in the morning instead of at night. Like this morning I took it as I was too low last night to chance taking it then.

They also moved me to a new pharmacy as the old one couldn't deliver and this one can.

I also got visits from the Vision loss people who used to be part of the Institute of the Blind but now run as a separate unit. They have three levels of support and you go through an assessment to see which level is suitable for you.

The first level is safety in the home which is how to navigate safely around the house and do cooking, and how to use the oven, etc. The second level is how to make use of technical issues such as using a computer and dealing with a microwave and the third level is how to navigate out of the house to get around in the community.

Like they helped you to use your oven and microwave and use the telephone. A lot of this was putting wee Velcro stickers on certain parts so you would heat up a meal in the microwave. How to setup the oven and how to make it easier to dial a phone number. I was also shown a way to toggle between two TV stations on my remote. That way I could toggle between CBC and CTV on my office TV and then BBC on my TV in the living room.

I was also introduced to a new keyboard which uses larger black letters on a yellow background which I am using to do this article.

There are also ways to better store food in cupboards and fridge/freezer so you can find them. So all in all some really excellent help for those newly blind.

My only criticism is that they took far too long to come and see me. I could really have done with their help in the early days especially.

As I was getting lots of visits, several times a day, it became hard to know who had visited and from where. The supervisor made out a log book so everyone was asked to sign in so everyone would know who had visited and when.

So I continued to have sight issues and for a few weeks could only see dark and light. That meant if someone sat in my office and was completely still I wouldn't know they were there. When they moved I could detect the movement as they showed dark against a lighter background.

So on the Monday following I got a lift from CHAPS who offer a taxi service for $15 for which they will drop you off for an appointment and take you in to reception. They will then come back to collect you and take you home.

I might add here that I did have to go to London, Ontario for an operation on my eye and CHAPS will take you there and back for $60 each way.

I got two drivers and both were excellent. The first one actually sat with me in the hospital and helped me complete forms and guide me to all the places I had to go.  The second one also took me into reception but then left me to it. 

So my appointment with Dr. Anjema resulted in my going to London to get an operation from Dr. Gondar. The first visit was to get an assessment and the second visit a week later was to get the operation. The idea of the operation was to remove the blood from my eye. I'm afraid he didn't do a very good job so I then needed to go back to Dr. Anjema for an assessment and he arranged for ne to go back and see him. He looked at my eye and he seemed to be happy with the result so far and arranged for me to see Dr Anjema in a weeks time.

Of course I wasn't happy with this as I still had a lot of blood in my eye and at time of writing this I still have blood in my eye albeit it is
gradually going away.

When I saw Dr Anjema for the third time he gave me an injection and that did make a difference and my sight started to come back. I am due to see him on March 24th (since cancelled due to the Cova virus) when I'll be able to get another injection which will hopefully finally restore my sight.

Overall the support I've been provided by the various healthcare people has been very good but there are a couple of issues which I feel need to be addressed such as...

I felt that training of support staff when dealing with the blind is not good enough. For example some visitors would cook you a meal but wouldn't put stuff back in the same place they got them from. Like a very simple issue was that I knew I had a wee plastic glass by my kitchen sink. I could just put my hand out and get it. Problem was that when a person put it back there they put the glass upside down. As I had to rely on touch I was looking for an open top but as it was upside down it was a hard top and thus I thought it was the salt so ended up having to find another glass. The problem here is when you can't see, everything becomes a major issue.

Also one of my visitors had helped me with an issue with my computer and had drawn a chair up to my desk to help. Problem was that they left the chair there when they left so when I got up afterwards I walked right into it which was somewhat painful.

The point is that with the visually impaired it's very important to put
things back exactly where you got them from.

My friend Nola came down for a couple of days and she drew out a plan of my office desk so that folk that visited ensured they'd leave stuff where I could find it. Nola was also great it that she helped me with my email and did a standard response to some of them and others were either deleted or kept to deal with at a later date. She also helped with my online banking and paying some bills.

I also experienced things going missing and that included some diet coke. As I was having some issues on pouring liquid into a glass I decided to get some cans of diet coke. I don't drink that much so I'd only used two cans and when I went back to get another can it seemed to me that there were only a few cans left so some had gone missing. A couple of days later I wanted another can and found the outer of the diet coke box was empty which meant someone had in effect stolen some more cans. Now it's not the money that bothered me at all, it was far more that someone had taken some cans without asking. If they had asked I'd have been more than happy to have given them a couple of cans if they'd asked. I also lost one of my saucepans but later found it by chance in another cupboard. I also have two rectangular plates that I use to serve up sandwiches. These are missing and still can't be found along with a wooden bowl that has also gone missing. So with the diet coke issue I am left wondering if they have been stolen as well. I can only assume that someone who visited at least twice is responsible and likely ones that do it on usually a one off basis.

I would like to see better training given to people when they look after a person with sight or hearing difficulties. Certainly when I went to see Dr Anjema I could wait 3 hours to see him. Not once did one of his staff come over to see if I was ok. I mean I'm sitting there unable to see anything other than vague shapes and you can't make a cup of coffee with that level of sight. At least the staff at Dr McCanns place made a point of keeping me up to date albeit one of their staff walked me into something on the wall. You'd think an eye institute would do better to look after people with eye sight issues. I also think they should be put at the head of the queue when there is a long wait as at least sighted person can read a book or watch some TV. 

I will add that the receptionists did an excellent job of arranging for Chaps to pick me up and take me to my appointment.

I will say one of my helpers did configure my Kindle to make use of Alexa so I was able to have a book read for me. That was a very big help.

So by the time I got to February my eye sight had improved to the point were I could just about make out faces. I could even go downstairs easily as I could make out the steps. And as February progressed I was able to read the numbers on the phone key pad and on the remote controls. Still had issues with reading stuff on the computer screen. Am constantly amazed at how many people use grey text on a white background. I was having to copy the text into Notepad to be able to read it.

When I wake up in the morning currently my eye sight is excellent but once I move my head and sit up streaks of blood start to expand into the eye and within a short time it creates a mist across the eye making it difficult to see much at all.

Today as I write this the small blood dots have gone from millions to
thousands so I can now see to read although it is a bit of a strain so I only do so for an hour or so and then take a break.

Yesterday Nola popped down for another visit and I decided to try and drive to see if I could make a trip. Nola was very brave and sat beside me and I made it to our destination and back with only one issue which saw me hitting a pavement when turning at a set of lights. So it was an hours excursion which went well.

In the case of long-term help it would obviously be better if you could have the same person each day as that way you get to know each other and that makes life a lot easier.  Of course that's not practical as they also need days of so you're always going to get new people in.  I do note that in the first month getting a meal cooked for you was a great benefit. Only problem is that they are normally only there for an hour so that limits what they can prepare for you. That was where the Red Cross lady came in handy as she could spend 2 hours with me at a time and so was able to make me a Shepherds pie and also macaroni and cheese both of which took over an hour.  That thus gave me three meals with each.  She was able to give me 10 hours total but that could be in half hour slots or any multiple thereof.

It also seems to me that if you are to deal with the blind you should be blindfolded for say three hours and asked to see what you can do like move around a familiar space, get a drink, make yourself something to eat, make a phone call, etc.  I guess with the deaf wearing head phones might simulate deafness and then let them see the challenges they'd have to say order a takeout at a drive through.

One thing I didn't consider was getting the flu shot as I usually don't meet in person with that many people and almost never go near a hospital. And so due to this sight issue I've had more people in my home than I've ever had before and more visits to hospital ever. I do note that one of my helpers has been very helpful in helping me to order groceries online for home delivery.

I also note that with the cova19 virus that the store delivery people now offer to just drop the groceries at the door. Also when someone comes for a home visit they now ask you if you've got any symptoms or have recently travelled abroad.

Another aspect of losing my sight was that when driven anywhere I was seeing strange things.  Like on being driven to London at times I thought we were driving into a moving train whereas I eventually learned we were over taking a truck.  There was also the sensation of driving down a Gorge.  Like I know that Chatham to London is very flat so there are no deep valleys anywhere and yet I kept feeling we were driving down a very steep valley which was somewhat disconcerting.

While sitting at home I would see strange things such as seeing what seemed to be strange aliens and other strange sights like one time I could see a cartoon with two rows of 4 pictures.  I couldn't read the text but it looked like a real comic book.  I guess this was a combination of all the dots of blood in my eye that coalesced into pictures on a random basis.

I have since learned that this is a recognised condition called Charles Bonnet Syndrome (CBS).

I thought I'd try this article as with time going by I'm starting to forget some of the issues I've had to deal with.

Michelle was the overall coordinator for the services I was offered and she was very helpful.

I've added some pictures to this account to help with background and hope if you ever have to deal with a visually impaired person you'll be more understanding. It was sure a big wake up call for me personally for sure.

And just as an added point... when I was talking to Dr. Anjema he told me that the local hospital were working on a new database of clients records.  He told me that they have made no provision for other medical people in the area being able to access the new database.

He sited the UK as a place they should emulate as even in a wee doctors practice in Wales when you entered the patients social security number you got everything any hospital or medical practice had on you both in the public and private sectors.

For example I was in emergency in the hospital and they took an ultra sound of my eye.  Then the on call specialist also took an ultra sound of my eye and of course Dr. Anjema also had to do an ultra sound of my eye.  So there were 3 taken when 1 would have done. Just think of the savings that could have been made.  OH!  And Dr Gondar in London also did an ultra sound so that was 4 and I expect Dr Gondar's one would have been the best as he used a huge machine which must have provided the best scan of the lot.

Vision Loss https://on.visionlossrehab.ca/en

Community Health Services in Canada

Logs

Fall Protection Strategies

Erie St. Clair LHIN

CBI Home Health

Chap

Useful Contacts

Stay Put - 519 809 9788
This company will pick up groceries and take out food for $10.00 delivery charge. You can also pay by debit or credit card. This is for one store but if you require something from a second store they will charge an additional $4.50.

Instacart
This company will deliver from Canadian Superstore, Walmart, M & M, Shoppers Drugmart and Staples. You order online and pay by debit or credit card and they will deliver. Fees start at $4.00.  Problem with this organisation is that in normal times it works well but during the Cora virus pandemic they are very poor at doing their job.  For example when I placed an order it was going to be 5 days before they could deliver it.  On the actual day I expected delivery I received 4 emails saying they were running late and each provided a new estimated time for delivery. The 5th email then told me they were unable to deliver and asked me to book another delivery date. At that point the earliest delivery time was another 5 days away.  I thus cancelled my order as I was going to run out of some items by the time they said they could next deliver. Given their complete failure to deliver the previous time how likely was it they would deliver on this new date?  I couldn't risk it so cancelling my order was the safest option.

Life skills programs assist persons with a disability to learn the basic skills of daily living.
Services may include training in the ability to travel about the community alone; to live independently in a private residence; to maintain health through self-care and use of medical services; to live within their personal income; to maintain grooming and appearance; and to cope with other requirements of successful independent living.

Community Health Services in Canada (Red Cross)

101 Helpful Hints for the Visually Impaired
Our thanks to Chrissy Miller, Vision Loss Rehabilitation Ontario, for providing this information in pdf format for us.

Do Not Call List in Canada

I think I mentioned at some point that I must have received at least 500 calls from Duct Cleaning scammers over the past few years.  I'm on the do not call list and so I should only have had one as when I mentioned I was on the do not call list they should have removed my number from the list.  I have actually ended up getting a new phone system where I can block up to 250 numbers.

I got sent in an article cut from the Toronto Sun which talks about this and here it is...

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