Further eye tests

I had to return to the eye hospital on Monday, and expected problems, when we explained that I was supposed to go to the spacial awareness clinic, rather than seeing an ophthalmologist

But I saw a different ophthalmologist who did the tests in a different way according to my wife and was more thorough this time.

I then saw a specialist, who said that he understood our concerns, but he was trying to work out in his own mind whether my problems were simply eye problems or linked back to the brain. 

He did a few more tests and then said that as my prisms had been changed again since my last visit, he was concerned, and wants to see me again within two months, to see if the prisms help. 

This will also allow him time to consult the spatial awareness clinic to see what they think. 

It seems that the muscles in one eye are weakened, and the eye is trying to turn outwards, and this is why I need to turn my head slightly to watch television and look straight ahead, etc. This also accounts for the headaches and pain in the right eye.

But at least I can still see, even if things are not totally clear. 

But he said that he could not see a spacial awareness clinic doing any more than he is trying to do. 

Most of this is down to the fact that I now have occasional double vision, blurred vision, slight cataract problem,  and occasionally see people in front of me without being able to see their faces clearly, something I find very frightening at times. 

This can be embarrassing especially when I pass neighbours in the street, and do not recognise them. 

Bright lights like those in shops are very hard to cope with, but I cannot get "react alight" lenses because of my brain problems, as the specialist thinks they could cause extra problems. 

However, I was told that if I cannot use the prism, I can use an eye patch over the right eye to cut out the double vision side of things. 

This lead to some light-hearted humour going home on the bus with my wife calling me patch.

Of course, as I child I used to have a book about a dog called patch, so I found it funny, even though it's slightly serious. I have a feeling that the book is still in our house and has been read by three of our grandchildren.

But if you cannot laugh at yourself and see the funny side of things like this, then you may as well give up completely.

But in all honesty, I guess that after two hours of eye tests in one go, I was extremely tired, so I needed to have something to laugh at.  

So now it's a case of doing things like writing on bigger screens while I can still do it, but I think that I will be doing less online stuff for the time being, until I find out what is happening. 

Weekened away

This weekend we decided to go and stay in our static caravan in Barnard Castle.

It has been a stressful week as we were trying to sort out problems with a mobile phone, and ended up changing the phone twice, because they were not picking up the signal as they should. 

After a stressful time talking to our provider we decided to go away to try and relax.

We started loading up the car, and then I dropped the caravan television breaking its base. 

This was not a good start, but we took the other television out of our back bedroom, and my wife carried it out just in case I dropped that one. I confess that the television box bottom fell out, but I suppose it's really my fault for not having my hand under  the box as I carried it.

The weather was lovely but I had two very bad nights, and in the end we were close to coming home early, but I wanted to try a third night. 

That third night all went off well and I slept through without any problems. 

We had a lovely relaxing weekend, with lovely weather and that made up for a terrible week.

Now we are home and back to normal again. Tomorrow I need to go to the post office to pick up the new mobile phone, and hope it works properly. 

Here's hoping for s descent week without anymore horrors at night. 

Visual perception problems

Over the last few years I confess to struggling with seeing things that were either not there or I simply did not recognise them properly

This can lead to many different problems, some of which can be distressing, if you do not understand what is going on. 

I often have problems writing documents down now, because I often repeat  complete sentences etc, and never see this until it is checked and pointed out by either my wife or someone else. 

On a few occasions it's been too late to spot mistakes and if I have been giving a talk, I obviously repeat these things. 

I suppose that while I was working, I never had this problem, but now it's one thing which can be upsetting.

I also have visual problems these days, because when I am out I sometimes see people walking towards me, but I do not always see their faces, and that feels very odd. It also causes problems if it's a friend walking towards you, and then it's embarrassing not being able to recognise them from a short distance. 

Or walking towards a doorway can cause problems because I either hit the doorframe or the door handles causing bruises to the arms. 

Things like walking through a doorframe is something we all take for granted, until one day when you hit the side and find people looking at you as if you are drunk or stupid

These days coping with fast moving people and trollies in supermarkets can be horrendous on some days. On some days I find it hard when children come up from behind of in front of my on these shoes with wheels on there heels etc. I suppose it's because they move so fast and my brain cannot keep up with things anymore. 

However eyesight or visual perception has caused many other concerns over the years because, I cannot read something like an email, and get the true meaning each time. Some times my brain tells me one thing, while in all honesty the email is saying something else. This means that unless my wife checks it, I can sometimes send back the wrong reply.

So these days all documents are read by my wife, and then she explains them to me. I can see the time coming when things like the blog, Twitter and Facebook etc, will be closed down, because they will be too difficult to use. 

I admit that this will be very hard, but I would rather give up than end up looking silly

I remember using lots of big words while I was working, now I simply don't  understand what they mean, and end up asking my wife. It's hard to imagine that one word can cause so many problems, because the brain tells me that it's one thing, then when I look at it again, I see something else.

Even listening to the radio or television, I have to ask what something means. 

Lewy Body Dementia and coordination

 This document like many others, was written by using Dragon 10  voice activated  software,  to make life easier because of coordination problems.

I do not always say this,  because there are times when I try to write things using the keyboard as normal. This is an old post which has been sitting waiting to be checked for mistakes, although with my eyes and brain I do not always see them



 Early on before my diagnosis of early onset Lewy Body Dementia, I realised that my coordination was going wrong.

This happened at work, but as I was on call 24 hours a day I put it down to tiredness at times, but then I realised that it must be something else.

It seemed to start with using tools, then I noticed that I had problems typing on the computer.

This caused problems because it meant that some reports took longer than expected, because something had reversed, and although I hand been right handed all of my life, my left hand had now become faster and this caused problems

It meant that although the letters of each word were there, they were all mixed up, like some sort of code.

I still have no idea what has happened, because this has never been looked at by any doctor even though it's been mentioned a few times.

One consultant at a dementia clinic thought that something had reversed in my brain, but could not be sure.
An MRI scan done later on, said something about cerebral atrophy and TIA but nothing was discussed after this, as the doctors changed, so we were left with no information about these results

To get over this typing problem, I had to sit on one hand and type with the other, something which was frustrating after typing with two hands at work

Eventually my daughter suggested using voice activated software on the computer.

At first we tried the version on my laptop which was Microsoft, but this had problems because it did not understand accents in the UK.

After further talks with my daughter who is a biologist, it was decided that I should try the Dragon voice activated software, which I gather is used by the NHS.

We bought this and loaded it onto the computer, and started the trial testing. This was stressful at times, because of the setting up, and getting it to understand the words.

At one stage in desperation, I swore at the thing, and saw a row of question marks, at which stage I started to laugh, and confess that I never had any more trouble with it again, until I had problems with the computer and had to reload all of the software again

To me this has been a godsend because its so good and relieves much of the stress of trying to type

Yes its expensive, but when your brain goes haywire, I think we have to use anything we can to help ourselves and make life as easy as possible

So now nearly every blogpost I do is written using this software. Yes there are still mistakes, when the software thinks I have said one thing instead of something else, but then its down to my and this brain to find the faults and correct them

One thing I have realised is that the tone of my voice changes on odd days, and this causes odd problems.

I have no idea what causes these tone changes, but I guess its all part of life    

Eyes and Parkinson’s

I have had a lot of problems with my eyes recently, and this has helped me to understand it much better. Now I need to speak to the Parkinson's Nurse about this


People with Parkinson’s often experience problems with their eyes

and eyesight.1 Some of these problems may be due to Parkinson’s itself, or Parkinson’s medication, but they may also be due to other causes.

This information sheet looks at the common eye problems you may experience, such as blurred vision and glaucoma, and looks at other causes and possible solutions.
Who treats eye problems?

Ophthalmologists – are medically trained doctors. They examine, diagnose and treat diseases and injuries in and around the eye. They also perform operations on the eye.

Optometrists – examine eyes and give advice on visual problems. They also prescribe and fit glasses or contact lenses. They usually work in the high street, but may also work in a hospital eye service. Some have a role in caring for patients with stable, long-term (chronic) eye conditions.

Orthoptists – diagnose and treat vision problems and abnormal eye movement. They are usually part of a hospital care team looking after people with eye problems.

If you are having problems with your vision, you should speak to your GP or specialist. You can also speak to your Parkinson’s nurse, if you have one. A Parkinson’s nurse is a qualified registered general nurse with specialist experience, knowledge and skills in Parkinson’s. They play a vital role in the care of people with Parkinson’s. You can read more about them on page 5.

Your GP, specialist or Parkinson’s nurse may suggest that you visit the relevant eye and vision health professional to help treat your problem.

How often should I get an eye test?

If you have Parkinson’s, it is recommended that you attend regular eye exams with an optometrist, at least once a year, even if you aren’t experiencing any specific problems with your eyes. You may find it helpful to tell them you have the condition, so they can look

Parkinson’s can affect your ability to move parts of the body, including your eyes. So you may have difficulties when starting to move your eyes or when trying to move them quickly.2,3 It may be more noticeable when looking at a fast-moving object, such as when watching moving cars or a tennis match. Sometimes, instead of a smooth movement, your eyes may move in a slow and jerky way.2

This can make certain activities, such as driving, more difficult. If this happens talk to your GP, specialist or Parkinson’s nurse because Parkinson’s medication may help.2

Difficulties in moving the eyes up or down are more common in a condition called progressive supranuclear palsy (PSP), which is a form of parkinsonism (an umbrella term that describes many conditions that share some of the symptoms of Parkinson’s).4 If you are experiencing this problem,
your specialist or Parkinson’s nurse will be able to give you advice.

Find out more: see our booklet Driving and Parkinson’s and information sheet Parkinsonism.

Blurred vision
Blurred vision can be caused by difficulty moving the eyes.2 But it can also be a side effect of Parkinson’s medication,2 particularly anticholinergics (such as Disipal, Arpicolin, and Broflex).5
Blurred vision may happen when you start taking anticholinergic drugs and may improve with time as your body gets used to the medication.5

But it can also happen after you’ve been taking the drugs for a long time or when an adjustment has been made to the dosage. If blurred vision continues or gets worse, consult your GP, specialist or Parkinson’s nurse. Don’t stop taking your medication before seeking advice.

If you wear reading glasses you may find it helpful to visit your optometrist. A slight change to your prescription might improve blurred vision.
Find out more: see our booklet Drug treatment for Parkinson’s.

Double Vision
Doe visionuble vision is seeing two images of a single object some or all of the time. The two images may be one on top of the other, side by side, or a mix of both.6 This is also often caused by problems moving the eyes.2 Some people with Parkinson’s experience ‘tracking’.

This is when the eyes do not move smoothly across a line or from one object to another, for example moving across a page when reading, or up and down.2 Poor co-ordination and fatigue of the muscles that move the eyeballs can mean that the eyes do not quite move together.2 This can cause double vision.2

There are also causes of double vision (a common and usually minor eye condition) that are nothing to do with having Parkinson’s, such as thyroid problems, diabetes, or an astigmatism in one eye.7 If the problem continues, see your optometrist for advice. or ask your GP or specialist if you can be referred to an ophthalmologist for further tests. Slight changes in your glasses prescription may also help with this.

Dry eyes
People with Parkinson’s may blink less often than other people.2 Blinking helps to clean the eyes by removing dust and dirt. If you blink less often these can build up, making the eyes dry or sore. Dry eyes can have other causes, so see your optometrist for advice.8 They may suggest you try artificial tears. These are available from pharmacies and may help reduce discomfort and dryness.9

“My wife has been having problems for some time with her eyes after taking her medication.
At last I can put a name to the problem. It’s called ‘blepharospasm’. This is a side effect of the medication but quite rare.” Graham, a carer for his wife who has Parkinson’s

Involuntary closure of the eyelids (blepharospasm)
Blepharospasm occurs when the muscle that closes the eyelid contracts or goes into spasm. This can cause repeated twitching of the eyelid or difficulty in keeping the eyelid open. Sometimes the eyelid may close completely.10

The cause and treatment of blepharospasm are complex because levodopa, one of the main drugs used to treat Parkinson’s, may cause it,2 but on other occasions these drugs can help to improve it.11 In mild cases, simply rubbing the eyelids may help. Sometimes, injections of botulinum toxin (botox) are used to treat blepharospasm.10

Blepharospasm is more common in parkinsonism than Parkinson’s.12 Your GP, specialist, or Parkinson’s nurse can offer you more advice.

“I often think I see someone or a dark shadow out of the corner of my eye and experience flashes and pulsing of light in low light conditions. This has been confirmed by my ophthalmologist as an optic nerve problem due to Parkinson’s.” JC, diagnosed in 2006

Hallucinations
Some people with Parkinson’s may have visual hallucinations.3 This is where they see things that aren’t there, such as flickering lights, objects, people or animals.2 It is more common in those who have had Parkinson’s for a long time.2 It may be partly due to Parkinson’s itself and partly to the medication that is used to treat it.2 Older people and those with memory (cognitive) problems are more likely to have hallucinations.13

If you are experiencing visual disturbances, your specialist may suggest reducing or changing your Parkinson’s medication.3 If the hallucinations keep happening there are other treatments that can help.

If you’re experiencing hallucinations, it is important to rule out causes other than Parkinson’s, such as poor eyesight or bad lighting. The sudden onset of hallucinations may also be due to an infection or other illness.3 Speak to your healthcare professional if you are having hallucinations.
Find out more: see our information sheet Hallucinations and delusions in Parkinson’s.


Other visual issues
Problems with low light levels (contrast sensitivity)
You may find that it difficult to see in low light levels.2 You may also be unable to make out the shape of things clearly, such as a light-coloured object on a light background. This may also affect your ability to read fine print.

Colour vision
Some people with Parkinson’s may have difficulty telling the difference between some colours.2 This problem may be worse for shades of blue or blue/green. Your colour vision may improve with Parkinson’s medication.

Spatial awareness
Some people with Parkinson’s may have difficulty judging the space around them.2 They may not be able to judge the distance between objects, and may have problems when walking past objects2 or getting through a narrow space.14 Sometimes reaching out to touch the sides of doorways or other objects may help. An occupational therapist may be able to help with advice about organising your home or work space to help you manage this problem. Speak to your GP, specialist and Parkinson’s nurse about a referral.

Problems with spatial awareness can affect driving as well as walking so you may have to give up driving. You must tell DVLA if you’ve got any problem with your eyesight that affects both of your eyes, or the remaining eye if you only have one eye. For more information visit gov.uk/driving-eyesight-rules or call 0300 790 6806. You can also speak to your health professional for advice.
Find out more: see our booklet Driving and Parkinson’s and information sheet Occupational therapy and Parkinson’s.

Seeing movement
Some people with Parkinson’s don’t see movement accurately,2 and seem unable to judge
the speed of moving objects such as traffic. If you experience this problem, try to take extra care when crossing roads or when driving. Speak to your health professional for advice.
Problems with glasses

If you have Parkinson’s, your posture may become stooped.15 This can cause problems if you wear glasses. If you often lean forward, then you might find that you end up looking over your frames instead, or your glasses may slip down.
Your optician should be able to help you adjust your frames and lenses to suit your posture.

Glaucoma and Parkinson’s medication
Glaucoma is a type of eye disease that damages the optic nerve, which, if untreated, can lead to loss of sight.16 If you have glaucoma you may have problems with some Parkinson’s medications, such as anticholinergic drugs and levodopa.17,18

‘Open-angle’ glaucoma is the most common type of glaucoma. It is called ‘open-angle’ because the angle between the iris and the cornea is open.16 If you have open-angle glaucoma there may be risks when using anticholinergic drugs.19 Where there is no other option you should discuss the advantages and disadvantages of using them with an ophthalmologist or a Parkinson’s specialist, so that you can make a decision together about whether they’re the right treatment for you.

Anticholinergic drugs are not recommended for people who have the less common, closed-angle glaucoma,20 and levodopa (Sinemet and Madopar) should only be used with caution.21, 22
Some dopamine agonists can have side effects that affect the eyes. For instance, rotigotine23 is not recommended for people who have closed-angle glaucoma. Yearly eye check-ups are recommended if you are using these drugs.

It is helpful if your Parkinson’s specialist and the ophthalmologist can work together when prescribing medication for you if you have glaucoma. So, if you have this condition, always tell your GP, specialist or Parkinson’s nurse.
Find out more: see our booklet Drug treatments for Parkinson’s.

More information and support

Look after your eyes
This website has been set up for the general public by the College of Optometrists. They have developed a set of patient information leaflets to give straightforward advice about some common eye problems. You can also search for optometrists in your local area.
www.lookafteryoureyes.org
Royal College of Ophthalmologists
An independent professional body that sets the standards and examinations for medical doctors aiming to become ophthalmologists, and provides surgical skills training.
020 7935 0702
www.rcophth.ac.uk
College of Optometrists
The professional, scientific and examining body for optometry in the United Kingdom.
020 7839 6000
www.college-optometrists.org

Parkinson’s nurses
Parkinson’s nurses provide expert advice and support to people with Parkinson’s and those who care for them. They can also make contact with other health and social care professionals to make sure your needs are met.
The role of the Parkinson’s nurse varies. Each will offer different services, aiming to meet local needs. Some nurses are based in the community, whereas others are based in hospital settings.
Many Parkinson’s nurses are independent prescribers. This means they can prescribe and make adjustments to medication, so someone with Parkinson’s doesn’t always need to see their specialist for changes to or queries about their Parkinson’s drugs.
Parkinson’s nurses may not be available in every area, but your GP or specialist can give you more details on local services.
You can find out more at parkinsons.org.uk/nurses

Information and support from Parkinson’s UK


You can call our free confidential helpline for general support and information. Call 0808 800 0303 (calls are free from UK landlines and most mobile networks) or email hello@parkinsons.org.uk. We run a peer support service if you’d like to talk on the phone with someone affected by Parkinson’s who has faced similar issues to you. The service is free and confidential – ring the helpline to talk to someone about being matched with a volunteer.

Our helpline can also put you in touch with one of our local information and support workers, who give one-to-one information and support to anyone affected by Parkinson’s. They can also provide links to local groups and services.

We also have self-management programme for people with Parkinson’s, partners and carers. It is an opportunity to reflect on life with the condition, learn about self-management and think about the future. To find out if there is a group near you visit parkinsons.org.uk/selfmanagement

Our website parkinsons.org.uk has a lot of information about Parkinson’s and everyday life with the condition. You can also find details of your local support team and your nearest local group meeting at parkinsons.org.uk/localtoyou

You can also visit parkinsons.org.uk/forum to speak with other people in a similar situation on our online discussion forum.

Bad nights return again

Last year my  nightly nightmares seemed to ease off, and I thought wrongly that I was at the end of this episode, but I was wrong.

Over the last 4 weeks they have returned with a vengeance, but I simply do not understand why this has happened, because as far as life is concerned there have been very little changes if any.

Some of these things bare no resemblance to real life at all, but no matter how you look at them, you are a major part of these things.

I guess that is why so many things have been sent flying during the night when I lashed out, that includes bedside lights which ended up being shattered, because they were sent flying across the bedroom

They are so graphic that it is hard to understand where they stop and reality kicks in.

I suppose the problem is that being part of this horror, you are actually acting it out in more ways than enough, and this makes it difficult to cope with.

I have often woken up from one of these, and then I have then sat in the bathroom or have gone downstairs for a while. 

Sometimes I am lucky and that's the end of them, on other occasions however, they seem to start off where they stopped and that is very distressing.

On one horrible night, these things seemed to go in for ever, but I have no real idea how long they lasted. 

But during this night, I thought that I had woken up three times, and had then gone to the toilet and then sat in our front room. 

Eventually I did wake up and realised that I had not been out if bed at all during the night. 

Terror hit me at this stage thinking that I may have wet the bed when I thought I had gone to the toilet. But as luck would have it, all was well and I had not wet the bed.

But these things are so realistic,  that they can be remembered in great detail throughout the next day, and that is frightening. 

I was horrified when I hit my wife during one nights horrors, and she ended up with a black eye, which upset me, but it's not happened since. 

I think that she had tried to wake me up from the nightmare, and then became a part of it, so now she keeps well away and just talks to me

I understand that this sort of thing could be related to Parkinson's disease, but whether that's correct or not I don't know, but I hope to find out next month.

Mobile Phone technology

When I was an engineer there was technology at every point, and I enjoyed it even though I was a late starter, where most of this was concerned

Then my memory started to play up, and I had problems hanging on to using the computer at home.

These days we take technology for granted, and everywhere you look people are using mobile phones, or tablet computers, which in some ways is amazing, considering that it's not so long ago that computers and the Internet started. 

These days I carry a mobile phone for security, and it's very helpful for my wife to keep in touch with me if I am out for a walk.

However over the last few weeks, my wife's phone has been back to the workshops twice because of signal problems, so I am restricted in what I do until it comes back. 

For some reason the phone signal just dropped out, and if I was talking to anyone at the time, the call was cut off.

It also meant that the phone went into emergency mode on more than one occasion, so I could not make any calls

We were told by the shop where we bought it, that it was the phone signal, but after it stopped working again we went into a Samsung shop, where an engineer told us that the handset was faulty and was not picking up the signal correctly. 

So it had to be sent back to the shop where we bought it, for further repairs in the hope that it can be sorted out properly this time 

Mobile phones are a big part of our lives these days, but they are also play a big part in our independence when your brain plays up, as they allow us to carry on doing what we want without needing a full time carer with us all of the time. 

I enjoy going for walks, but my wife has problems with her ankle at times, so it restricts her walking some days.

But through the mobile phone I know that if needed I can be tracked, so it gives me that bit of freedom and security.

I confess that I cannot wait for this phone to be returned, so that I can get my freedom back again

Remaining positive

When you have something like Lewy Body Dementia, or Parkinson's, you need to try to remain positive even when things are seemingly dropping apart.

Things like trying to find the right word can be very frustrating at times, and there have been many occasions when I have had to rewrite something, simply because  I could not find the right word, or even spell it. 

On my bad days I use Dragon 10 voice activated software I my computer, and that is helpful, although it was stressful setting it up.

However these days I try to break a  word down in an attempt to write it, and hope that spell check can correct it. 

But there are many other problems which can caused untold stress, usually at times we can do well without it. 

When I was working as an engineer, I used to be good at drawing and sketching, which was handy if I needed to rebuild something. Now that's all gone, and no matter what I do I just cannot copy something like I used to do. 

I can start drawing something, but then I need to go back again, and again to correct it or change parts just to get there. 

I find this upsetting because I loved drawing and sketching as a hobby.

My coordination has also gone these days, and I get upset with things like simple shopping bags. 

Just trying to get hold of the correct parts while hanging onto my walking stick, can be stressful 

 I gave up DIY projects because my coordination problems caused accidents at home, so it was decided that it was better to let things go completely,  rather than end up in hospital. 

This first started a few years ago,  when I was working, and being on call 24 hours a day, I would retire to my shed and use my wood turning lathe, something I really loved doing, until one day when things started to go wrong.

As an engineer I was responsible for ensuring that all machines had emergency switches fitted so that a machine could be stopped in a hurry, as and when needed. 

This wood turning lathe had three extra switches on it for emergencies. But this day I tried to stop the machine be grabbing the high speed revolving wood block. 

This ended up with some very badly bruised fingers and hands. Luckily for me nothing was broken or taken off, but it was a warning that something was wrong. 

After one more attempt at using the lathe it was decided by my family, that it had to be dismantled in an attempt to stop me using it.

But as the Consultant in the North East said one day. If something you have done for years fails, leave it and try another day. 

If it fails on the second day leave it and try on a better day.

If it fails on the third attempt, leave well alone, otherwise it will cause untold stress. 

Try to do something new, instead. 

This always stuck in my memory and has helped me to move on when hobbies fail.

However we all know that moving on is not always easy or stress free. 

While I was working I also gave up driving, after ending up driving off the road one day. 

Nothing was damaged, but I had no idea what had happened, but I realised that my brain was no longer in control.

A few years later when I was on rivastigmine,  I went back to driving, because I felt safer and more in control  than many of the drivers on the roads. But this has not stopped completely because of eyesight problems which are terrible on some days

I know that I have had eye tests where nothing was found, so it's all down to the brain not getting the right signals from the eyes. But I could not live with the thought of killing someone because I was unsafe to drive, so to me this time it's far better to stop altogether until my eyes are sorted out.

But if it comes to it, then my driving days are gone and that's it. 

I can always get the bus, yes it's slower, but at least someone else is driving. 

If like my you struggle typing on your computer at times, try to use voice activated software, it's amazing.