MD Conference 2017 Report.

 

MD conference 2017

 

On Saturday September 16th 2017, I attended the Macular Society conference in London with my daughter.

Right from the time we stepped outside the Tube station, I was astonished at how well they were organised. As we stopped to look at our maps of the location of the conference, we spotted two people in yellow teeshirts with Macular Society on them. Every hundred yards all the way to the hotel, on every corner, there were more yellow teeshirted people many with flags to attract our attention.

We were greeted at the Hotel by warm friendly volunteers and shown where everything was. Including coffee and pastries.

The exhibitions were many and helpful and as we entered the main conference room, my daughter remarked that she was impressed by the 600 people who were proactive and not just sitting back and being visually impaired.

At 11 am the conference began with a welcome speech. Followed by three speakers. The first gave a simple illustration of the mechanics of AMD, using a packet of biscuits as an example. When the lowest biscuit in a packet is stale, it crumbles and disintegrates. This is what happens in our eyes, and the cleaning cells wear out and crumble. (Not absolutely accurate, but that is the gist of the talk.)

The next speaker was a consultant from Moorfields who was more scientific. And due to restrictions in time he had to speak very fast. But he gave examples of the many experiences of how AMD can progress, both from the patients point of view and the consultants. He also said that while we question why there are so many cases now, we need to bear in mind that we have an increasingly ageing population. Our bodies are not meant to last that long! Which you can agree with or not.

The third speaker gave a talk on Charles Bonnet syndrome. People with AMD can hallucinate. Some hallucinations can be dangerous, for example one may see a brick wall in front of them that is not there. But there could be the day when there really is a brick wall!  There can be clouds of butterflies or people with odd clothes or shapes. They reckon that it is the brain compensating for the loss in sight. There is research going on about this, but no answers yet. However, at question time a woman in the audience said that, she had had hallucinations for some time, but since she had developed another age related disease they had faded away, and she wondered whether there was a connection and the brain was now concentrating on the more serious disorder.  The Speaker was very interested to hear about this and was going to talk to her more afterwards.

At 1pm, we broke for a delicious lunch of rolls, sandwiches, wraps and fruit. Coffee was in full flow all day long.

After lunch we went to the workshops of our choice. We went to the one on supplements and nutrition. Very interesting. The best thing that you can do with supplements is to study the AREDS reports. I will do a seperate blog about supplement and AREDS in a couple of days.

As far as food was concerned, eat the rainbow, which is what I have said in other blogs before. Include lots of veg, the darker the better, and fruit also darker the better. Red meat, (not processed) is good, especially liver.

It was emphasised that once we have MD all we can do through food and supplements is to slow down the process. But that if we take on a healthy lifestyle early in life AMD along with a lot of other diseases can be delayed if not eradicated. I will add that I believe that even if we do go on to have any disease, if our bodies are healthy in the first place, we stand a better chance of recovery or at least we help our bodies to fight it.

It was also emphasised, how much smoking can damage the eyes.

So for those reading this that don’t have AMD, bear in mind that it is another reason to live healthily.

We then went back to the main conference room and heard another speaker on the latest research. They are now in a position where they can announce success with two people who have received stem cell surgery.  Their eye sight was quite bad but they have now said there is an improvement. There are now another five waiting for surgery. It will be about five years though before they will be putting this treatment out for the public. Even then, at the moment it will only be available for the most suitable criteria.

I could not help but wonder what will happen when NICE get hold of it!!

But, my daughter who stands a big chance genetically of getting AMD was encouraged by the day and learnt a lot about how to lessen the chances of it happening. Especially the amount of time and money that is going into research and finding a cure.

There was an awards ceremony for the best team within Eye hospitals, kindest and most helpful Opthamologist, and the various volunteers within and out of the MD Society.

All in all a wonderful day, and all for less than £25 I must add.

I for one am going to become a paid up member of this marvellous society. You will see their leaflets and booklets with loads of information, in yellow and black enlarged print in the Eye departments of your hospitals. I have come accross their literature in my capacity as a volunteer for my local Guild, Improving Lives. I also belong to one of their loca groups who meet monthly.

There is a helpline for those who are worried and want to talk to someone. And there were also the numerous volunteers who guided us to the hotel, were around with their smart black clothing and scarves or ties with the logo on them, to help and support in many ways in the conference and hotel, many of whom have MD themselves, and prove that life does not end with this condition. We can still contribute to society in a way that will encourage those who are badly affected, and prove that.

So, watch this space for lots more to come as I learn more, and experience myself what can happen in our everyday lives with AMD. Everyone experiences it differently, but it is useful to find out from others how they overcome it.

There are groups on Facebook and here are the links.

First the UK MD group for the UK.

https://www.facebook.com/groups/589067591220411/

Secondly for the USA

https://www.facebook.com/groups/amdcommunity/

I belong to both.

The Macualr Society Website is;

www.macularsociety.org/

 

 

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AMD Constant adjustment.

 

As many of you know, I have the condition known as AMD (Age-Related Macular Degeneration)

I won’t go into the details of the condition; you can google it for that, or look at previous blogs that I have written.

I like to write about my experience, for people to understand it, both in the carer’s capacity and the sufferer.

As soon as people are diagnosed with this condition, life becomes a challenge.

Firstly the acceptance of it. Sad to say, many consultants or ophthalmologists, don’t understand that when they use the words, “There is no cure, and nothing that can be done I’m afraid” (which many people who have the condition have experienced,) it frightens people badly. They panic, they despair, they wonder what is going to happen and I have had people say that they could not stop crying for days afterwards.

Secondly, life takes on new challenges.

For this blog, I will take just these two, as there are much more in our everyday lives.

The first one, scary as the consultant’s words are, they are not as final as they may sound. Yes, there is no cure at present for AMD, but there could be in the future. But there is so much help, and support that in reality, the consultant’s words should be something like “There is no known cure at present, but as long as you don’t have any other conditions, you will not go blind. And there is plenty of help and support out there for people like you. Let me introduce you to a way to start.”

You could then be led down several routes.

(The information in this blog may not be suitable for other countries, but I hope that it will lead you to see that there is support, and you will find out from the US group.)

So now to the second point from above. Life takes on new challenges.

Yes, it does indeed. Firstly there is the challenge of acceptance. I am not saying that there is never any hope of a cure, but at the time of writing there is not. I have had some people sending me links about treatments that they have had, and it may have worked for them, but scientifically there is no cure.

I have also had suggestions to me that it is emotional and maybe there is something that I am not seeing in my life that needs to be sorted. Someone even suggested that all illness is emotional. I am not dismissing that idea, and yes, I can go along with that, but AMD is a mechanical breakdown, and it needs to be managed until there is a better way. Much the same as managing any other breakdown in our body.

If the emotional side of it grabs you, then, by all means, look at it. If it works for some, I would dearly love to hear about it. Not theory or hearsay, but testimonials of your own experience.

But I am talking to people who don’t think that way, and just want support for their condition. To know how to learn to live with it, and make the most of their new lives, with AMD and hear about how others manage.

So, back to the challenges that AMD can present themselves in our everyday lives. Well, there are many;

  • Learning how to manage gadgets, books etc., by adjusting the font sizes.
  • There are plenty of hearing tools, such as audio books, and your local library will help.
  • Having some visual identification such as a white symbol symbol-canecane, so that people will understand if you are taking a long time in the supermarket queue or getting on and off the bus.
  • Finding ways of continuing your hobbies. With suitable lighting and magnifying tools.

Those are just some of the aids that help. You will find out more as you go along.

Then, as the condition progresses, you may have to make more adjustments.

Up to now I have managed to continue my hand sewing and have been making some quite intricate items. But in the last two weeks, I have realised that I need to find an alternative. I can no longer manage it. I am currently struggling to make my last cushions after doing them for a few years. That is an adjustment. A challenging one, but by being tenacious, I realise that I can make crochet items instead because crocheting is a more tactile activity.

red cushions  (2)

That is just one example. Other examples may be, changing your room around so that you have plenty of lighting or shadow where it’s needed. For example, you may find the TV is better in another part of the room or your chair.

I am finding that my life is enhanced by having this condition. I am starting to work in a local group who do courses for people with visual limitations, and from this, I am making many new friends. I also belong to the local Macular Society group, and sometimes I almost ache with laughter at seeing the funny side of everything.

I have great pleasure writing about the condition because not many people who have it can do that for one reason or another. That way I feel that life still has a meaning and purpose.

We can all adjust to anything in our lives. Most times it is fear that prevents us from seeing that. Whether it is illness, disability, job loss, losing a partner or someone special in our lives and many other life events.

I am not saying that it is easy, I know from personal experience what it is like to be depressed after or during a life-changing event. But what I want to share is that in the end with a positive mindset, and being grateful in our everyday lives for the things we take for granted; it can be done.

I hope that reading this will encourage many people not to despair when diagnosed with AMD. There is much to hope for, and all is well. Just keep making those adjustments and enjoying life. It is possible.

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Support for AMD

My design Keep your eye.Support for Visual Impairment (AMD)

There are many people who when told that they have a problem with a vision impairment, are panicking and distressed.  Especially when they hear the words, “There is nothing we can do for you!” 

But those words are not true as far as getting on with your life with a vision impairment is concerned. I am talking here about AMD. (Age Related Macular Degeneration) ,

You may not be able to find a cure, but you can find plenty of help to make your life rich, full and abundant. I will tell you about some of what is available and have put up links to help you find out more below.

Personally, I have found help in abundance since being diagnosed with AMD.  I feel astonished at times when I see how much support there is out there. And most of it is Free.

Just as an aside here; note that I am still active even with a vision problem. Life does not come to a halt with AMD. I have met some amazing people who are active even with very poor sight. That is what support is all about.

I am currently attending, The Macular Society group meetings once a month and also a monthly lunch meeting with the new friends I have made in the group.

I have just completed four days, spread over four weeks, at the local Guild in Plymouth called Sensory Solutions. The course is called Improving Lives. I have found a niche in that guild now as a host to help out with the course.

I am going to attend the monthly meeting for graduates of the course at the Plymouth Library once a month, and am also hosting them. 

Hosting means that I will be making the drinks, serving food, helping people in and out of the taxis, preparing the rooms and generally supporting people with any concerns that they may have. I have made new friends by doing this too.

There was also an opportunity for my husband to come along to Sensory Solutions to learn more about the condition and meet other people who either live with visually impaired people or who support them in other ways. I have found that he understands more about what I experience because of that.

Sensory Solutions have also shown me how to use my settings on my lap top and also my iPad to make them easier to use.

Large Print.keyboard

Not many people are aware that their local eye hospital has a Liason Officer. These people are there to help you find your way through the maize of support and help available. They will also give you a low vision assessment. If the Consultant does not tell you that, just ask at reception.

On Facebook there are several groups, I belong to two. One in the USA and one in the UK. When I feel alarmed at something that I hear or something that is happening to my sight, I can just go into one of these groups and will very soon feel supported and get answers.

So, the moral of this story is; don’t panic, don’t be afraid, don’t be isolated.

I have found these groups to be upbeat, yet understanding, both the physical ones and the Social Media ones. I feel supported and useful. Life does go on even with a Vision Impairment, and just the other day I found myself saying that I actually get a kick out of it!

Here are the links.

The Macular Society.  You can google the society to find out more, but this link will put you through to the many groups all over the UK. https://www.macularsociety.org/groups

There is the well known RNIB (Royal National Institute for the Blind. You will be amazed at what is available. http://www.rnib.org.uk/benefits-and-support

For your local area in the UK go to http://www.visionaware.org/info/emotional-support/coping-with-vision-loss/peer-support-groups/125

On Facebook, the links I mentioned are; The UK Macular Degeneration Friendship Group.

https://www.facebook.com/groups/589067591220411/ 

And in the USA, which is run by two eye consultants.

https://www.facebook.com/groups/amdcommunity/

There are other groups for MD, one which I started myself, but I have let that one run down because I have found the ones above to be so helpful.

The reason why I haven’t gone into support for other visual problems is that I mainly write for those people who have AMD. But I am sure that if you look, you will find support for whatever condition you or your friend or loved one may have.

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AMD. Emotions.

 

early signs md 2

We all suffer loss at some time in our lives.

The feeling of loss comes from losing something precious.

A loved one, a loved possession or perhaps moving from a beloved place.

It can be a loss of a limb, of our hearing and our independence perhaps.

In the case of Aged-related Macular Degeneration, it is a gradual loss, but there comes the point where you have to accept that it is never going to get better.

(Some people like to claim that it can get better because there are treatments available outside of the NHS in the United Kingdom, but I have looked into that, and it depends on what type of AMD you have.)

I want to share with you my journey with this problem because I can see that there is such a lack of information about what people are actually experience. I did not know about the darkness, distortion, light sensitivity and other problems. I just thought that it was a matter of losing central vision.

Now I want others to know what to expect or what their relatives or friends are experiencing. I do understand that there are no two cases alike. Each person’s  experience will be as different as each of the millions of others who have it.

Yesterday after suffering from dry AMD for two years, and then a further nine months with WET MD, I finally reached the point where I had to face up to the fact that it is never going to be better than it is now.

I am currently waiting for the point where my eyesight has degenerated to the NICE guidelines, so that I can start having injections to slightly improve the sight or at least arrest the deterioration. (Injections cost the NHS £1000 each.)

In the last two weeks, I have been experiencing distortion, and I thought that my eyes had reached the necessary point.  So I was surprised when the consultant said that there was no difference on the scan from four weeks ago.

When I asked why I have the distortion suddenly, he replied that he was surprised that I had not had it before.

He also explained that I only have it in my GOOD EYE!

It is weird how I have struggled seeing out of my bad eye, all of my life, but now the good eye is so bad that the bad one sees clearer!

He also explained that the injections might slightly improve the sight again, and they will most likely maintain the sight that I have. But it is worth repeating that the sight has to get worse before it gets better.

This is where the conundrum comes in. I suddenly realised that the sight I have now would never be any better because they will not give me the jabs until it gets worse. Therefore it is never going to be any better than it is now.

Does that make sense? My emotions went into a dip yesterday when I realised that deep down I was hoping that the injections were going to make things better.

I hope that this blog makes sense to you and you can understand what I am trying to say.

I am firing this off early in the morning before a busy, but enjoyable day out in Falmouth in Cornwall with some friends. I am so grateful for that.

A very kind liaison lady came to see me at the Eye Infirmary yesterday, and she gave me some anti-glare goggles to place over my glasses, for the light sensitivity. She was there for me and listened and reassured me that I would never completely lose my sight unless anything else goes wrong other than the MD.

So I have a lot to be grateful for. But I wanted to share this to my groups on Facebook, and others who may find it when looking up AMD on the internet. Just to help people understand this condition that bit better.

I am also grateful for the lovely people in my local MD group in Plymouth, for their company and understanding. When we eat out once a month, we can sit and laugh and feel somewhat normal, even with the enlarged print menus that the restaurants provide!

 

 

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Can I Prevent Age-related Macular Degeneration?

early signs md

 

early signs md 2early signs md 3

 

 

 

      These illustrations show the progress of how a person with AMD can experience the decline in vision.      

 AMD (Age-related Macular Degeneration) is quite a common condition .

The macula is located at the back of the eye and is the most sensitive part of the retina. When it is damaged the centre of your field of view may appear blurry, distorted or dark.

I MUST EMPHASISE THAT IT IS THE CENTRAL VISION THAT IS AFFECTED AND PROVIDED THAT YOU HAVE NO OTHER EYE CONDITIONS YOU SHOULD NOT GO COMPLETELY BLIND.

Ageing itself can cause damage, and there are two types of AMD commonly known as Wet or Dry.

The dry type is slow advancing, and many people will have it for some time before they notice there is something amiss.

The first signs are that you may find yourself forever cleaning your glasses. Or you may simply put it down to needing new glasses or that you are putting poor sight down to part of the ageing process and ignore it. It is mostly picked up when you have an eye test. Generally speaking, it begins at the age of around 50, but since nothing happens at any certain age, that is not a given fact.

Dry MD can slowly develop and once diagnosed, it can be monitored and you can change your diet and lifestyle to help slow the process down.

However, 1 out of 10 cases develops into Wet MD and can have more serious implications. Although with wet MD there are injections to slow the process down, there is still no guarantee that it will work.

Let me tell you my story.

Nearly three years ago during a regular annual eye test, the Optician showed me the photos of the back of my eyes, and I could see white spots. (Drusen)  He explained that these are signs of Macular Degeneration.

I felt quite alarmed because my Mother has it and I have seen her struggling over many years. But this optician told me about a nutritional supplement that would help to slow up the development. We shall discuss that supplement in the group that I hope to start on Facebook.

I already knew of a Guild in Plymouth which helped people with vision and hearing difficulties, so I went along and found a lot of information about the condition and also what aids there were available.

They also told me about Plymouth University having a department where you could go and have regular examinations and also be a guinea pig for students learning Ophthalmology. Not only that but if there was a serious development, they could contact the Eye Infirmary direct and I would not have to go through my GP.

I rather liked that idea, so I went. And for the past two years I have enjoyed talking to the tutors and students and finding a lot of information. They also have a scanner there, and it was fun to see the back of my eye laid out for interpretation.

They have been impressed with my tenacity and resilience to the situation, and how I stay so positive. But I must admit to being quite alarmed at times when I notice more severe symptoms such as distortion, even to the extent of seeing people’s head’s shaped like ET.

I have a couple of other issues with my eyes, such as double vision which manifests when I am tired and with the added complication of the 6th nerve damage. So, eleven years ago it stopped me from driving. Although I had the problem all my life, as I got older I could not control it so well. But that is another story.

The 6th Nerve damage was caused by the forceps at birth. Resulting in what is commonly called a lazy eye. So I am mostly reliant on my left eye, I often describe it as “I can see all right, but it feels like the brain will not tell me what it is I am seeing.”

Because of the problems with my right eye, the Eye Infirmary are keeping up regular monthly checks. If I lose the vision in that eye, I will be in trouble.

Last July I went along to the University because although the regular eye test at the opticians resulted in new glasses, I was still struggling to see. They did a scan and found that it had developed into Wet MD.

Wet MD is where abnormal blood vessels grow underneath the retina, and these vessels can leak fluid and blood, which can lead to swelling and damage of the macula.

The University fast-tracked an appointment for me at the Eye Infirmary (What a horrible name)

After numerous tests, the EI are monitoring me regularly because when it reaches a critical point, they can start with injections into the eye, which will slow up the progress.

The latest development is that peoples faces are distorted and have taken on a perculiar appearance. I have adjusted my own image here so that you can see what I am seeing. me-now-2016Distortion

 

 

 

You can read in a previous blog how this affects my everyday living.

http://www.patriciacherrylifecoach.com/experience-macular-degeneration/

Some people have claimed that there is a cure, but I have yet to come across any proven cures. The EI and the University certainly have not found any.

But I was asked the other day about whether MD can be prevented.

It is best to start as early as possible to make lifestyle changes. 

Although none of us can guarantee to prevent any disease in our lives, there are things that you can do to strengthen your chances of not getting it. Or giving your body a better chance to deal with any disease at all.

It is no surprise to me that the answer is the same as with many other diseases of the Western world, such as obesity, cancer, Type 2 diabetes, and other modern diseases.

  • Avoid Smoking
  • Exercise regularly
  • Eat a healthy diet rich in green leafy vegetables and fish.

I do all of these things and also take a special supplement called Macushield.

I am considering starting the Facebook group for this condition, both in helping people to try and prevent it and how to deal with it.

Would you please comment either on this blog or in the comments on Social Media if you would like to join us.

There are plenty of MD Facebook groups in the US, but because our health care systems are different in the UK, I think that it will be of benefit to many.

Also, of course, the nature of the condition prevents people from reading on Facebook, and I suspect that many don’t get the opportunity or are not aware of the advantages of it.

But it may be that you have a relative or friend that you could help by belonging to the group.

Would you please share this, because I would like as many people as possible to benefit from a good Facebook group on AMD.

The picture below is the scene without any eye problems!

Meadow

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