Difficulties of diagnosis…of anything!!

I know its been a while since I last wrote but it has been a very strange year… What I am focussing on today is how difficult is to diagnose any type of Dementia and/or cognitive dis-abilities, and how the GP/Doctors system of not being able to discussing co-morbidities in the same consultation may have a negative impact in diagnoses. As always these are my rambling thoughts only.

Of course COVID-19 has impacted on all of us, and I am no exception.  Fortunate enough not to have had it, obviously all of the hospital appointments surrounding whatever I have been living with has come to a complete standstill. Maybe though, that’s not a bad thing because you can get caught up in a cycle of appointments to Doctors and you somehow become a ‘patient’ with a diagnosis. With a ‘dis-ability’ a condition suddenly becomes a focus in your life, and how to live normal,  when you should be just living and ignoring the dis-ability, but that can seem impossible.  You seem to become accustomed to waiting till the next appointment comes along…

How hard is it though to totally ignore cognitive difficulties; short term memory problems, not being able to understand what is being said, not being able to focus on one person speaking in a room with even the slightest extraneous noise?  Are you able to ignore those things absolutely?  I think not.  Unfortunately there is always someone or something there to highlight them without realising it.  So it’s hard to ignore them and live without even a hint of any internal attention to them, to live without any distraction of a ‘dis-ability’.   I think of Dementia as a kind of shelf life which is dependent on a whole host of internal and external parameters the end result always not being happy ending.  

Where I left off when hospitals shut for everything other than emergencies and COVID-19 was having had appointments for this and that seemingly going round in circles, nobody quite understanding what was going on with me medically.  

The Eye Hospital: I have been going back and forth a year, having this test, then that test  at different hospitals resulting in a complete and utter mystery as to why I was having trouble with blank spots in my vision.  

The Memory Clinic:. Unfortunately, this service in my area is in complete disarray!  Staff leaving, no provision for younger people at all.  The premises unsuitable for anything other than being an old Vicarage that it used to be.  I have felt for a long time that my Alzheimers diagnosis needed to be looked at again, but was told by the psychiatric nurse “Once someone has a diagnosis there is no point in looking at it again”.

My GP: Constant appointments to my Doctor about my;

  • Fibromyalgia pain and decreased mobility is seen just as that, Fibromyalgia and decreased mobility. It’s recorded that I have Fibromyalgia so there is nothing they can do apart from listen.
  • Problem with swallowing and choking occasionally and was referred to a Neurologist.
  • Intermittent urinary incontinence – now that’s something that we often feel ashamed to talk about.  Urge incontinence for women appears to be acceptable because – ‘as you age, it’s normal‘.  Let me tell you it’s not normal! There is a difference in leaking a little, and leaking a bit more at random times, and unable to get to the toilet quick enough.  This dis-ability is not dismissed but sign posted to the Incontinance Nurse who can support me. No answers to why is this happening now?
  • My vision becoming a real problem but I’m already seeing a consultant at the Eye hospital.  
  • The exhaustion and constantly falling asleep
  • Being unbalanced and falling over, in fact becoming worried that your balance is so unstable it is a problem.  

Finally, I say to my Doctor “None of this makes sense, none of this is normal.  Why haven’t I progressed in eight years of Alzheimer’s disease (AD) diagnosis (however thankful I am for that), what is going on in my brain?”, and this is where it get’s interesting…

I don’t know if you have read before where I said that I felt it was wrong that Doctors can only focus on one symptom at a time, and not talk about co-morbidities?  Well, this is where it shows how important it is that ALL of what a person has been diagnosed with should be taken into account at some point during a consultation.  So instead of a Doctor telling you that if you have several different things going on that you want to talk about, to focus on one (or two) and make further appointments for the others, maybe they should listen to all, then say they would like to focus on one particular issue at a time.

My Ophthalmic Eye Consultant questioned my diagnosis of Dementia, and wanted to get in touch with the memory clinic.  My Doctor referred me to a Neurologist because of the mild problem I was having with swallowing and choking – she felt it was possibly neurological and referred me to get some tests done on this at the hospital, but then that has been on hold because of COVID-19, she also discussed my concerns about my Alzheimer’s diagnosis and was willing to refer me to a Professor of Neurology at the major teaching hospital who focuses on rare and hard to diagnose cognitive problems.   At the same time she organised for me to have an MRI scan of my brain.  Meanwhile the Psychiatrist at the memory clinic left but wrote to me saying ‘they would not follow up to discuss the results, until another person was in place but tentatively decided that I may have FTD – Frontotemporal Dementia’…..  You could not make this up!!!  They couldn’t be arsed to see me so just wrote to me with that.   I get an appointment with the Professor of Neurology but cannot go and see him because of the current situation, so, he phones me and I do a phone consultation which lasts half an hour and he is thorough.   Finally I get a letter from him with an appointment for September and also what it says is a complete shock.

I ‘may’ have a new diagnosis.  No dementia.  The thing that has progressed the most with me is the physical disability and pain.  The thing that I was diagnosed with at the same time, eight years ago when I was diagnosed with AD was fibromyalgia.  I was living on a narrowboat at the time and was in pain all over, my legs, arms, joints, and was more than once afraid of becoming more unstable as I walked along the narrow gunwale of my boat.  Climbing along lock gates was also beginning to worry me, I was feeling less agile than I had been but put it down to age.  I’ve had biomechanical physiotherapy and hydrotherapy for the pain and lack of mobility. Now, I shuffle a bit, I walk all over the place like I’m drunk.  I can barely walk round a supermarket without having to sit down.  I have pins and needles in my legs all the time and sometimes arms, and the pain…..  Ive always lived with some pain so just put up with it.  I won’t, or rarely take medication for it because I am happier with 24 hours of pain I can bear, rather than having less pain for a few hours followed by a horrendous ‘come down’ of it coming back.  I am not one for taking pills if I can help it and never have been.  So the letter following the phone consultation contains what he thinks it might be which is Extrapyramidal Disorder. Basically the definition is: A movement disorder caused by defects in the basal ganglia. The clinical manifestations include changes in the muscle tone, dyskinesia, and akinesia. Causes include vascular disorders, degenerative disorders, and antipsychotic drugs. Its similar to Parkinsons Disease. Definitely not drugs because I was not on any drugs when I was first diagnosed with Fibromyalgia or AD.  Soooo, again I’m not sure what to feel yet.  I know there is a cognitive disfunction element to it but am so desperate to get to the appointment to discuss everything in more depth.  However, at the point of writing the letter he had not seen my elusive MRI brain scan, so who knows what’ll happen when I get to see him.

I guess, it just goes to show that cognitive disabilities and are not cut and dried as to shunting them into a Dementia diagnosis.  I have always said I have felt a bit of a fraud when it comes to my Alzheimer’s because it wasn’t progressing as it should.  

Thanks for reading.

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Alzheimer’s and living

Sometimes, on a good day, I find it hard to believe I have Alzheimer’s.  I question whether I have ‘dementia’ as a symptom.

Of course it doesn’t last long the wonder and the doubt, because I looked at how confused I get at certain times, and the lack of memory intake of recent information amongst other things.

What I am understanding is how I can never be seen as totally ‘normal’ and I then think how can anyone want to be friends with me knowing that I am slightly broken?   I think I have always been a person who spends a lot of time alone, feels comfortable with my own company.  Sometimes that can be a sort of a silent world, when I have no radio, tv or music on.  The silence feels okay and I don’t feel lonely, but I do worry that it is my way of retreating from a world that I have always felt not quite at home in.  That is of course, the dyspraxic part of me speaking, but it has an impact on how my Alzheimer’s is.

When my ability to be coherent and indeed, sensible in my thoughts, ideas and speech shines it is difficult to see any brain disease.  But, I know it’s there.   I know my vision is currently a problem.  Patterns are beginning to dazzle, confuse and mislead me into being cautious of levels of flooring.  Steps where there are no steps in changes of colours, missing steps where there are steps because of the lack of contrast.  This is all new for me, and quite I feel quite shocked by it.  How can I mentally feel so alert and normal still and be affected by these Alzheimer’s symptoms at the same time.  I am grateful that my progress is still slow and is more physical than mental.  I am fascinated by all this and would love to be able to have an MRI or scan or something that I can look at and see exactly what parts of my brain have ‘holes’ now.  I loved the neuroscience part of my Psychology degree and if I had the energy I would really like to read current thinking on it!

I have been reading books again which is good.  I took my kindle on holiday to Cuba, yes Cuba! and read about 6 books, lying in the shade on the beach in over 30 degrees heat!

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Going through airport check in can be a problem now as they try and hurry you but I can’t be hurried anymore, the more they chivy me along the more flustered I get.  I should have learnt the word for dementia in Spanish before I went!  Booking assistance is a bit hit and miss and not really available/understood in some countries.  However, I love travelling still and don’t want to stop until I physically have too.

I loved Cuba and its people who have been shielded from a totally consumer driven lifestyle.   They are friendly and if they stop to talk to you in the streets, they are not trying to sell you anything, they just want to chat.  The county is lovely but like stepping back in time in parts with oxen ploughing fields, although there are tractors too.  Cubans are proud of their country and who they are and I feel deservedly so.  Their political history fascinates me and I realise that I hardly knew anything about it other than the words: Fidel Castro, Che Guevara, revolution and Communism, and that says very little.  We had a private taxi and a guide who was so knowledgeable and spoke with an Eton accent!  He laughed telling us he had no idea how when learning English in school he managed to get his posh accent!  Us British are so embarrassingly poor at learning languages, why the heck don’t we take pride in pushing languages in schools?

Being in Cuba did not present a problem for me at all, I don’t think I mentioned it to anyone, I didn’t need to.  I think the simplicity of these countries do not have visual difficulties of shiny floors, fancy patterns etc.  To my mind we have become like magpies obsessively attracted to a complicated shiny world.  Bring back simplicity in architecture, and design both inside and out I say!

I can still travel the world making memories of being in these places that sticks in my mind and live well with the brain disease Alzheimer’s.

 

 

 

I feel angry…

Why oh why are there so many articles about how to prevent dementia by changing your lifestyle?  This Guardian article makes me go……. Grrrrrrrrrr!

Lifestyle changes could prevent a third of dementia cases, report suggests

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Before commenting, read the article please.

What I would like to say is that change your lifestyle to drink less, stop smoking, be more active, keep your brain active and it will make you feel better, make your health better but it WILL NOT STOP YOU GETTING DEMENTIA.

The research/study they must be using to suggest lifestyle can prevent dementia can be applied to any of the following:

Heart disease, Lung disease, obesity, high blood pressure, Diabetes, help with arthritis..and any other condition that being active can help with.

Articles like this make me so angry.  Why?  Because it gives false hope and mis-information.   At present there is no cure for Dementia.  Research has yet to find out what causes dementia, they are beginning to understand what is going on a bit better, but not why this happens.  If they did all of us living with dementia would be on some sort of medication to reverse it, or totally halt it, and we are not.

These articles are really about unhealthy lifestyles and what can happen in the long term.  So why not write that?   Some dementias can be directly through lifestyle such as Korsakoff Syndrome caused by alcohol misuse or nutrient deficiency.   Some dementias can develop through the result of traumatic brain injury.

Here are some REAL sites to find information about dementia from professional bodies and people leading the support, help and information sharing for dementia.

So, I wish these newspapers stopped writing this rubbish just to fill space because it is not helping.

Rant over……..

 

 

 

Quandaries and solutions

Life goes on with its ups and downs and you think, ‘I really must write my blog‘.  But then you think ‘I better not write that‘.   I know that many of you know what I am talking about because it is that moment when you have an urge to share something very close to you but worry that it will cause a problem if others read it.  But how to let people know how everyday things affect you otherwise.

For me, living with Alzheimer’s (ALZ), there are things I want to just write because I am at a very early stage still and it may be of use to people knowing even at this stage how it affects me.    So, what do I do?  My blog is not anonymous in the sense that it has a name, not a random couple of words.  Maybe that was my mistake, maybe I should have made it more anonymous. I could have called it something like – ‘Missing A Marble‘ perhaps.   I guess it would not have made much difference apart from not being seen as a real person.

There are lots of things that go on in my life where my ALZ or dementia affects me but only in the slightest way.  In ways that would make me question why it affects me that way in particular.   The type of wondering that lingers in a corner of your mind knowing that you can’t quite put your finger on why you should react that way.

For a while, I have been under some stress at specific times.    To all people living with dementia, stress is awful but then stress is awful to everyone you could argue.  Why is stress worse for me?  When someone is shouting at you and you have no way out, it can make your dementia feel worse.   Most people can shout back, hold their own, and stop abuse towards them, and of course, there are many who simply can’t.  But, what if you have always been able to deal with angry people and suddenly you can’t?  You find yourself trying to diffuse a situation where someone is shouting in your face about nothing in particular, maybe most would find it difficult to do.   Not me, I trained three years as a counsellor, I understand how to diffuse situations, can read the body language, can see past the abuse that is vomiting from someone’s mouth.

Now, though as I draw on all my knowledge and experience, all I can come up with is – “la la la la la la” as loud as I can!   Worked, but even I realised that it was a bizarre thing to be singing at a time when another person is at their most aggressive.

Next time is different, I can’t cope with being shouted at.  The red face thrust at me as the mouth is opening and closing with the most absurd ridiculous noise emanating from it.  I start shaking and crying as I call the police…..

I have Alzheimer’s, I don’t need this. Nobody needs this.  But, I, cannot cope with it.  They should not be abusing me this way knowing I have dementia.

This is what families can do to each other.

But,

I strike back.   I will not be overlooked, patted on the head and accused of being “unstable“.  I will show you how capable I am.  How I can still organise charities to pick up furniture, quotes for house clearance, create timelines, communicate with solicitors, get things moving.  Not because I want you to see me being capable, but simply because I have the time and I can do it.

Disappointed.

I had a disappointing appointment at the memory clinic the other week.  The nurse did my MMSE (Mini Mental State Examination) test, which I always do well with.  I can usually remember the three items, this time it was coat, book, and apple.  I put the apple in one pocket and the book in the other and had no trouble remembering it!   I am the master of solutions…

I did get one score wrong – counting backwards in 7’s from 100..I was never very good with numbers and have to take time to work it out in my head, I am sure I have dyscalculia (problem with numbers).  I got one wrong and she said I probably just made a mistake.  Really?  ‘No’, I said, ‘I meant to say the number’.

Just because my MMSE scores are high doesn’t mean that I am not affected by my Alzheimer’s.

I can tell what has changed for me in the past year since my last appointment.  One thing is the ability to tell when something said is being said in jest or for real.  I struggle to understand throw away remarks as being just that.  I have to question, ‘did they mean that?’ There have been times when my daughter has said to me that she or someone has been joking when they said something, that it wasn’t meant to be real, and I have struggled to think it out how I couldn’t have seen it.  But truth is I don’t get these things like that any more which can be a bit embarrassing for me when I respond in all earnest.

I also find myself crying for no reason at all.  NO I AM NOT DEPRESSED, how many times do I have to say that!  I have a positive outlook on life, in fact I think my life is pretty good right now, despite having Alzheimer’s and despite the prognosis.  I have come back from a wonderful holiday….will write about that next and how I got on travelling, and have booked another holiday to Tobago in February to look forward to.  Anyway to get back to the ‘crying’ business, the nurse tried so hard to tell me how I have a lot on my plate and it is natural to get depressed about things. Grrrrrrrrrr…..I tell her I do not have reactive depression, nor do I have clinical depression, but I think she has her ears turned off.  Finally, thanks to my online friends living with dementia, I was told about PBA  (Pseudobulbar affect).  Online sites talks about ‘emotional incontinence‘, although I prefer the term emotional unzipping as explained to me by Dr. Jennifer Bute.   Anyway, I think I may have to print out some information and post it to the memory clinic so that they can learn about it!  I took it the info to my GP to tell them that I did not want to increase any antidepressants, he took the information and typed it into the computer without commenting.

I also discussed about the 6 monthly reviews with my GP which I have never had.  Apparently I am supposed to make the appointments myself.  I asked how I am supposed to remember to make an appointment every six months when my memory for appointments is pretty awful?  No real answer, but a suggestion to get the Doctors surgery to remind me- that’s not going to happen because they don’t do that either.  So, I am left without a solution for that one other than buy my diaries in advance to make sure I write a note in.

All this is more difficult when you live on your own.  I don’t have family to remind me to do things, or notice when I don’t,  or notice when I am not up to par that day.  I have to rely on myself alone.   Take it easy on the days when I am not 100% and push myself on the the other days.

I am also struggling to take my medication every day.  For goodness sake, I leave it next to the kettle so that when I make my morning coffee I can take my tablets, but do I?  Nope..I seem to be blind to the blister pack, and simply get my coffee.  A friend suggested that it would be better if they incorporated medication with coffee/tea and no one would forget to take them then!    I think, how can I not remember that I take medication every day, how stupid is that?  I am an intelligent woman and am used to putting all sorts of solutions to  put things in place, but it seems my brain simply switches off to certain things occasionally. Don’t think I haven’t tried all sorts of things because I have.  I have thought of a board on the wall to mark when I have taken it but I know I won’t keep that up.  I am now on my second phone app with a reminder to take them…which seems to be okay at present.  I tried recording my voice telling me it was ‘time to take my medication’ but randomly it started up during the middle of the afternoon!   Right now I have an app that is a simple reminder and is working.

There is a research study I would love to join but have realised that joining any research study is going to be hard for me because I have no ‘study partner’.   Single people living with dementia seem to be more disadvantaged because they have no ‘other’ to monitor or talk for them.  It is so hard for me to acknowledge that.   I did ask the Alzheimer’s Society if they could find someone/a befriended for me but I am unique in that I am so early in my diagnosis there is no one suitable for me.  I guess looking for a ‘friend’ to do things with who will get to know me and maybe travel with me to meetings etc, is a tall order and would take someone who is in a position to be flexible who would like a friend also!   Who knows maybe I shall meet someone who is need of a friend also….

As well as my recent holiday, I do have daily good things.  My allotment is coming along, slow but sure.  Once I find a way of getting some free pallets to my plot I shall continue to make some raised beds.  I had lots of veg this summer and am planning for next year already.  I do enjoy my activities with the YPWD – Young People With Dementia group.  I realise how lucky we are in Newbury, Berkshire to have them because what they provide is quite a rare thing around the country, which will hopefully with change with new groups springing up focusing on younger people with dementia.    I have enjoyed my weekly gardening with them, and the art activities we have done.  Recently we have had Harriet with us from the Corn Exchange in Newbury with us organising some activities in connection with the Library, and a morning talking about childhood books was most enjoyable.  We have drawn and painted, and created paper sculptures.   Yes this is an important group for me because I feel like I can be myself and not have to be ‘ultra okay’ all of the time especially because they are all truly lovely people.

 

 

Well now, what’s new?

Gosh it feels like ages since I have written and posted anything.  I am quite busy these days and need to get some time to sit and read, and also write.

Early December I lost my Dad.Scan 9

At 94 his heart simply stopped.  He was at home and had lost the reason to live after my Mum died last June 2015.   It was a sad time for all our family arranging a funeral for the second time in six months.   Now we have the hard task of working together to clear the family home, I don’t need to say how difficult that is.  We all miss him so much.

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So what else is new….well the biggest thing is that I recently tried to join a research trial for a new drug for dementia that has had some remarkable effects.  So I was keen to get on to the third phase.  Along I went and carried out the initial memory tests to see if I was eligible and was not really surprised to find out that my memory was too good for the trial!  Over time I have been feeling that my cognitive abilities have indeed improved and I discussed it with the researcher.  I have now been taking Rivastigmine medication (Exelon) for the last 2 (or is it 3 years?) and it has certainly improved things for me.  I have also worked hard in trying to keep my mental abilities active, by reading, writing, playing scrabble, sudoko and the like.   I think it is great news.   There are times when I know people have questioned their diagnosis (or others questioned the diagnoses of someone) when they do not appear to have any great cognitive difficulties or have improved.  It is very unsettling when someone has a diagnosis of dementia then told they do not have dementia because the symptoms have improved some what.  People want a reason for their cognitive difficulties.    For me, I would love to have a different diagnosis, ‘So sorry we made a mistake you don’t really have Alzheimer’s those empty holes in the blood flow in your brain scan was just a smudge on the camera lens’  and I still wonder if brain trauma looks the same as Alzheimer’s in a scan, but then know it is likely it leads to the same thing.  I even thought of trying to get a different diagnosis, perhaps downgrade it to MCI (Mild Cognitive Impairment) which I already have, but the reason for it was diagnosed as Alzheimer’s.  It all seems so complicated and simple at the same time.  What does it matter anyway – well I will tell you how it affects you.  I have to first remind you that I do NOT have Dementia, yeah yeah I know that Dementia is a symptom, but it is also a disease, and Alzheimer’s is classed under that.  You still with me so far?   Ok so having been told before by one GP that you cannot have Alzheimer’s without dementia due to it being a dementia, I have Alzheimer’s disease without dementia.  That fact still remains true at present unless anyone else can interpret my scans differently.    Holiday insurance: did you know that you cannot get a yearly insurance if you have a diagnosis of Alzheimer’s?  No matter that I may have only mild cognitive impairments, it is the word Alzheimer’s that is the crux.  I guess if I said my diagnosis is MCI then I would be able to get it.  I can get individual insurance for each holiday so I am told but at a greater cost.   (I have just booked a trip to Alaska with my daughter in August which we have been saving for! )  Driving licence:  I would have to apply for each every year with my doctors confirmation that I am able to drive.  I have however had to surrender it because my attention  is too poor.   Yet someone with ADHD, are they able to hold a driving licence I wonder?  Suffice to say the word Alzheimer’s in itself is a barrier to a lot of things regardless of the level of it.

It’s great though that my cognitive abilities have improved and I hope it will remain so for many years to come…….

I am involved in my local YPWD (Young Persons With Dementia) group and join in activities locally.  We had an arts and crafts course before Christmas which was fun, and since then it has been furniture up-cycling – something very close to my heart as I have furnished my flat with old furniture and am up-cycling it bit by bit.  I am really enjoying doing it and discovering what my style is!

On Monday I shall be speaking at the Berkshire Dementia Action Alliance Meeting.  When I was asked I felt a bit of a fraud but then I am more than capable to talk about how it was when I was diagnosed and what I have been doing since to keep my brain active – use or lose it as the saying goes, and how to make sure that I remember everything on a daily basis.  I can talk about how I still fear the future – when I allow myself to.   Also speaking with me is a guy  who is another member of the Newbury Empowerment Group so we know each other.   So I am trying to put together some notes for that.  Will let you know how it goes.

Next, I have been asked to be part of local nurse training giving information about early diagnosis and my experiences.  I can not only pass on what I know, I can also give them lots of information that they will not have even thought about!   I am so pleased to have been asked and can be a voice.  Not sure whether that will be by video or a talk.  Looking forward to being involved with that.

I have had some very small involvement in the West Berkshire Neurological Alliance, which is an excellent forum.  I regularly attend the Berkshire West Therapy Centre using their exercise machines to keep fit in a way that helps my Fibromyalgia.  It is such a unique place with only one other coming close to it in the country, I help out with raffles, and will help when they move premises on 1st April.

This year is already turning out to have the promise of lots to keep me occupied!