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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Help! I’m over 65 and Ageing.

 

happycherry_cover

Have you noticed that on any forms you fill out, they have a box for 20-30; 30-40; 40-50; 50-65 (or similar)

When it comes to age 65, we are counted as +

What does that mean to you?

What it means to me is that society, in general, dismisses the over 65’s as a number when everything becomes indefinite.

Over 65’s, in general,  have become indefinite, written off, uncertain about the future, invisible.

But I am working on making certain that any of that will not apply to me.

Over 65 is an important passage in life, and in these modern days, we could still live another thirty or more years. That is a lot of years to dismiss eh?

What about you?

Is it time to change all that?

After all, if the Government want us to work until we are 70 or even more, why put 65+ on forms, some of which are important to our welfare, such as insurance.

What can you do as an individual? Could you be a spark to the fire that helps to change that thinking?

We will show them that there is no such thing as 65+

We are still an important number.

Many people in my circle are still coming up with visions and new enterprises for the future at age 65 +!

There are some Facebook groups that you could join, to help start the ball rolling. Ageing with Vitality and The Silver Tent are just two of them. There is also one called Humorous Ageing if laughing about it takes your fancy. Here are the links.

The Silver Tent for women over fifty.

https://www.facebook.com/groups/1755706121345418/

Ageing with Vitality

https://www.facebook.com/groups/113172222365276/

Humorous Ageing

https://www.facebook.com/groups/1485161444859745/

Come on Baby Boomers, do your stuff, work your magic.

 

 

 

 

 

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Regular Eye Checks; Why?

Eye blue side

How often do you get your eyes checked?

 

 

  • Do you smoke?
  • Do you eat plenty of vegetables, especially the green ones?
  • Do you know how many people are blind in the UK?
  • Do you have parents or grandparents who have AMD?
  • Do you know what your risk is of getting AMD or any other visual impairment?

 

AMD (Age-related Macular Degeneration.) is becoming more common in the 21st Century because people are living longer.

Macular Degeneration as it is commonly known is the breaking down of the macula which is the part of the retina at the back of the eye that provides sharp central vision.

People with this condition can suffer increasingly blurred vision which leads to problems with reading printed or written text, colour, (particularly contrast) and difficulty recognising people’s faces. If you only have AMD and nothing else wrong with your eyes, you will not go completely blind. But you will lose your central vision.

There are other conditions with the eyes such as cataracts, glaucoma and Diabetic retinopathy. I recently heard a story about a chap who went for an eye test, and this was how he found out that he had Type 2 Diabetes. For an optometrist, our eyes are like reading a book. But as a friend of mine pointed out to me just today, you do need to be assertive and make sure that you ask the right questions, and what you can do about any conditions that they come across.

Also only today I heard of someone who had been scared by what the optometrist had said. That there is no cure for AMD and he was in the very early stages of the condition.

It did frighten me when the optometrist told me that I was in the early stages, but I put that fear into action by finding out what was available to help me. So don’t be put off by what they tell you, especially when they say there is no cure and there is nothing that can be done. They may be right that there is no cure, at least at the moment, but there is plenty that can be done to make life easier. I am afraid that many consultants and eye specialists have a habit of doing that, but they fail to point out that there is support available.

If you do find out that you have the early stages of AMD, you can take sensible precautions to take care of your eyes and help to slow up the process.

By wearing glasses or goggles and a hat to keep the sunlight out of your eyes. By learning what aids are available so that you stand a good chance of managing the condition.

So, the earlier you find out, the better. You may not notice anything wrong in your day to day life, except perhaps you may find that reading is blurred even with your reading glasses on. I found out from a regular eye check.

And don’t think that it is an old person condition, some people develop AMD in their twenties or thirties. I know someone who had junior onset AMD at the age of eight.

As a matter of interest here are some interesting facts for the UK. (You can google statistics or facts for your part of the world if you are not in the UK)

  • In the UK around 600,000 people currently have vision impairment caused by AMD, and around 70,000 new cases are diagnosed every year. (nearly 200 per day)
  • Over two million people in the UK live with sight loss.
  • Total sight loss in one eye is not counted against the legality of driving.
  • People with sight loss in one eye are not considered partially sighted.
  • Total sight loss is rare, only about 4% of people with vision impairment are totally blind.
  • Sight loss, in general, affects people of all ages but especially older people. 1 in 5 aged 75 and 1 in 2 aged 90. (This is in degrees of sight loss, from mild to being registered blind or partially sighted.
  • In the UK there are only 5000 guide dogs.
  • Every day more than 75 new people are formally registered blind or partially sighted.
  • 75% of blind and partially sighted people of working age are registered unemployed.

There are plenty more statistics that you can find, and some of them are quite revealing. Many people, including myself for many years before I had this condition, get confused when observing people with vision loss. They cannot understand why the person can see some things and not others.

I cannot go into the details here, but I have written some of what I experience as an example here;

http://www.patriciacherrylifecoach.com/category/amd/

As far as the legality of driving is concerned, it is a minefield. The law may say that you are safe to drive with a vision impairment, in fact, some people with an impairment may be able to see the required reading of the number plate. But the insurance company’s may have something else to say about it.

For example, I was told twelve years ago that I could drive under the law. I have other things wrong with my eyes as well, and one of them is double vision when my eyes are tired. I was issued by the Eye Infirmary with a pair of glasses with one lens blacked out (don’t ask about the technicalities please!) and told that I could drive while wearing them. If I were in an accident, I would be covered by the insurance as long as I was wearing them. If I were not wearing them, then I would be liable.

No-one seemed to take into account that wearing them was a hazard for me because I could not see properly with them on. So I had to make a choice not to drive at all. Driving for me, just as it is for millions of people, was freedom and giving it up was painful. But not as much as if I had taken the risk and failed to drive safely.

The main purpose of this article is to point out how important it is to look after your eyes. The main cause of AMD is not known. But the contributing factors are genetic, diet and smoking.

It is a myth that we can get AMD from bad light or too much exposure to computers, etc. But UV light is a factor and another reason for protecting your eyes in the sunlight. The jury is still out on whether computer and smartphones can cause AMD, but there is evidence surfacing that you can suffer what is known as Digital Eye Strain. Eye strain, however, is not a contributing factor to AMD.

https://www.ft.com/content/435eef82-654e-11e6-8310-ecf0bddad227

Looking at my earlier reference to contributing factors, let’s look at the genetic factor more closely. The genetic factor is only an increased risk. It is not a guarantee that you will get it. But, if you have someone in your family, particularly your parents, with MD, then you need to be extra vigilant with eye care. CauliflowerGet plenty of green leafy vegetables which contain lutein and zeaxanthin, which are two antioxidants stored in the macula.

See more about this here:

http://www.cookinglight.com/eating-smart/nutrition-101/foods-for-eyes/spinach-kale-leafy-greens

As for the other two, diet and smoking; just give up smoking, and eat clean as well as including the green vegetables.

And last but certainly not least. GET YOUR EYES CHECKED REGULARLY. At least every two years. Don’t take your eyesight for granted.

One of the most difficult things for me as well as the other 600,000 people in the UK to come to terms with, is that except a miracle, my eyes are not going to get better than they are now, and they are going to get worse over time.

At the moment, because I have developed wet AMD, I am waiting for my eyes to get worse before I can begin to have injections to make them better. Don’t ask!

The only things that I can do are; to make sure that I get the nutrients I need; to shield my eyes from the sun; to eat clean and to take the supplements that I take, to try and slow up the progress.

It is important to stay positive and just let AMD be part of my life and not rule it! But that will take another article, and again let me refer you to the link for my other blogs on AMD.

http://www.patriciacherrylifecoach.com/category/amd/

The other important issue for people with AMD is to get support. You can get it with the Macular Society. Tel 01264 350 551

https://www.macularsociety.org/?gclid=CL-fk6m66tQCFdYYGwodMnQCgA

I belong to the Macular Society, and there are groups that meet up all over the country in the UK.

And in the UK there is a support group to be found on Facebook here:

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

And in the US:

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

There are other support groups on Facebook.

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Transformation in Ageing.

flower fairy Florence

I have just been through a vital transition in life.

Through the last six months, I encountered “The Dark Night of the Soul.” A time when I was brought low and was forced to look at my life; where I was going, what I was doing. What was working and what was not.

There are times in our lives when we need to go through these dark nights. It is as if the Universe is saying “You are not listening to me, and you need to.”

I do not believe that the Universe, or God or this higher power, whatever you may like to call it, makes us ill, or depressed because I believe that we bring it on to ourselves. We think that we know best. So we will go on working, doing and striving, and wearing ourselves into the ground, or bed or onto pills, simply because we are not listening to that still small voice.

And that applies to anyone of any age.

Even those who say that they are living their purpose and carrying out what they know they are here on this Earth for, can be so busy doing, that they forget to be still, forget to listen, forget to notice things synchronising or not, and go ahead thinking that we know best.

I came to a place where I was forced to listen to that still small voice, and during that time I became quite ill, physically and mentally, but thank God that I still held on to my Spiritual life.

I realised that I had not been listening, I had been striving and worrying and pushing ahead, doing things that I thought I was meant to do.

I had a family problem to deal with, and although it was settled in a way that we thought was not possible at first, at the end of it, I had a meltdown. Not because I doubted, not because I was weak in any way shape or form, but because I had failed to notice that I needed to go through a transformation in my life. A passage of life that has taken me into my fourth age.

I run a group on Facebook for Ageing with Vitality. I blog about ageing. I talk about how we are still vital, but I had not taken into consideration that the physical body does age, whether we like it or not.

I was proud that I had reached the age of 72 and am still active, vital and healthy, but was finding the lower energy and the ability to multi-task, difficult to come to terms with. Along with a visual impairment that I now have.

We hear so much about staying active; keep exercising, keep walking, keep doing things, keep your brain active and on and on. But we can sometimes, be, so hell bent on doing those things that we ignore this important passage of life. Which is transforming into an older person, but one who can still have a good quality of life.

It may happen at different ages while growing into that fourth age. Some are ready to relax at sixty, while others will still be working at age 70, 80 or even more. But the important thing is that we do need to recognise that there will come a time for transition. It may not be an obvious one, but we need to be mindful of subtle changes.

I don’t mean that we wake up one morning and find that we are suddenly old, although for some who are taken ill this may happen of course. But I am talking about looking at why we are feeling more tired than we used to.

Is what you are doing working for you and the other key people in your life?

And I certainly do not mean that we have to “give in”. What I mean is that like a teenager who has to make the decision whether to go to Uni or the twenty-year-old who decides that life is going to change, they have left their teenage life behind and now have to settle down to life. Or the person going through a midlife crisis and decides that they want to change careers. We need to look at what our purpose is for the rest of the time that we are here.

For me, my transition has shown me that my purpose does not look like what I have been striving after for the last six or seven years. Even though in that time I have been more aware and conscious than ever before.

But I am at peace, and simply want to serve.

Nowadays, when I have a decision to make I ask myself what purpose it will serve?

I am so grateful that I do not have to work for a living now. I am grateful that I have accepted a simpler lifestyle and do not strive after belongings. My income is modest, and I love having no responsibilities.

I am healthy and do eat a healthy diet; I love walking and make sure that I walk at least an hour most days. I stay active; I love the Internet, Facebook and the groups that I belong to on there. I love the women’s group “Damsels in Success”.

I belong to a Women’s over fifty group “The Silver Tent,” whose purpose is to raise the consciousness of the world.

I love going to the Macular Society meetings with others who have sight problems. We have a laugh and obtain lots of important information.

I love eating out with friends and my beloved husband. I love writing and reading. Most of all I love my times with God, in quietude and meditation. Listening to the music of Taize, Snatam Kaur and other inspirational music.

My life is full and rich again after spending the last few months in transformation and healing. The transition into being a Wise Elderwoman.

Look out for regular blogs again now,  about Ageing with Wisdom and Vitality, Death and all that it encompasses, (I am a Funeral Celebrant) and the eye disease Macular Degeneration and what it can be like to live with it. I will also still dabble in eating healthily and supporting people with issues around food and their eating patterns.

It is good to be back again renewed and with a fresh vision.

How about you? Are you listening to that still small voice that may be telling you it’s time for that transition?

 

Life is a beautiful cycle

 

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