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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Staying proactive when all you want to do is sleep!

I have been busily trying to put together some pieces for a Dementia Friends working session I am doing with Rowena from the Alzheimer’s Society on Monday.  This is with Social Worker students at Durham University.

I always enjoy these Dementia working sessions as it gives me a voice and hopefully I can help towards making a difference for people living with Dementia if it gives a better understanding.

However, for the past few months I have felt so exhausted all the time and it has got to the stage where I am sometimes too exhausted to even shower in the mornings and when I do I have to rest afterwords.  I have Fibromyalgia so am already in constant pain, 24 hours a day 7 days a week…  and as I have previously said I don’t take any medication because of the side effects all of the medication.  At present I spend a lot of my days sleeping which is a tad non productive personally, but I just can’t stay awake!extreme-fatigue-contentPreviously putting together a talk about dementia for me has been relatively easy, because once I start writing I can’t stop as my head can go at a hundred miles per hour,  but lately the physical and mental effort of trying to think is so draining I am really struggling.  I don’t want this to be the end of my work, but I think I will have to reassess what I am able to do for the foreseeable future which is gutting.

So today I need to finish off what I have put together so far for one talk, and re-vamp another already written to suit.  I am not sure that I will be able to fill all the time allotted to me but will have to be content that I have done my best and not feel that I am letting anyone down too much.

Will let you know how how it goes.    Also Doctors on Wednesday for the results of a blood test, but have been told to look up Chronic Fatigue Syndrome (CFS) and see if my symptoms match.   What can I say, sometimes life kicks you when you’re down and you just have to find a way round to get up again.

Thanks for reading  🙂

 

Dementia Friendly Communities

Been just as busy February as January.   Last week I spoke at the launch of Blackhall and Hesleden Dementia Friendly Community.   Since our own launch of Dementia Friendly Seaham things have been moving along nicely.   But boy, these things take work, and time and commitment.

What does it mean to launch a dementia friendly community?   Look around your own community and see if there are any stickers on shop doors that indicate that staff have taken part in Dementia Friends Sessions.  How many do you see?   The large supermarket, does that have a dementia/disability friendly slow checkout lane?   What about cafes?  Your local library, council offices, your GP Surgeries?  What sort of groups are available; support for carers, peer groups, and activities, are in your local area?  Where do you think you would find out information telling you what there is?

Out of all of the members of our working group there are, effectively, only two of us doing anything.  Working groups, should be that, not just meetings where we discuss and others ‘do’.     However, there will always be people to want to make a difference and do put their time into making a change.  Equally there will be people who can network locally which is just as important.

My talks are becoming slightly more hard hitting, so that I am prepared to say that I am still waiting to meet more people like myself in my area.  Where are the people living with dementia I ask?  Why am I the only person able to speak at these events.  Reaching people in your own community living with dementia is not easy when you have no provision in place to sign post after diagnosis to support that does not yet exist.

My area with the aid of the Alzheimer’s Society have made wonderful strides towards looking at how we can be more inclusive to all.  There are a core of people that I meet at these events who are fabulous and work extremely hard at promoting change.   What I would now like to see is the general public supporting us.   I am touched when people come to speak to me at events telling me how brave I am to speak out, but I don’t feel brave, I am not brave.  I just have a desire to make things better for myself, and for the other people living with dementia in my area.  I just want to be able to have the choice of different groups I can attend or get involved with.  I don’t want to be sitting at home whilst my Alzheimer’s progresses and have no art group to go to, or anything similar.

When I am at home I am scared.  I feel dread at having to think and write a talk for the next event.  Maybe this is my dementia making me shrink back in stepping forward.  Part of me longs for someone else to take over but then I know I will never be able to step back and not get involved.   There is a wonderful core of people who are working hard, but I want to be a voice for dementia because I live with it, they don’t.

It is hard work for me to do these things on my own at home, the will is there but I have to admit to struggling to follow through sometimes.  I am finding that I can no longer organise things that need to be done ‘just like that’.

Days when my Fibromyalgia is flaring and I am wracked with pain making it harder, and now it is possible that I also have Chronic Fatigue Syndrome which is pants quite frankly!  I have to pace myself so that I can do one major thing per week with the Alzheimer’s Society, attend Art Group, my Knit n Natter group, then sleep the rest of the week.

I find it harder to get things sorted out at home these days, the small damp patch that needs doing before the walls can be painted, and the skimming of the ceiling too.    I need to find someone to help me dig the garden over, re-fence…….   Why can’t I just do these things?  I don’t know why, all I know is that I feel scared to do any of it.  It doesn’t make sense.  Once I have forced myself to do it I am relieved.  It almost feels phobic.   How I wish I had someone who could actually sit and do these things for me, or with me.  I am understanding that it may be time to de-clutter massively ready for when I progress.  Time to get a cleaner to help me keep my home clean and tidy.

In the meantime I will continue amidst the constant exhaustion, to give a voice for dementia when I can.26992176_1933561930010577_3170965173589389220_n

 

 

 

 

 

Crash…

That’s what I am talking about.  Last night the pain started.spikes1There is no position to sit with my legs to stop the pain, the burning of my knees, the deep screaming pain creeping with long spiky fingers along my leg muscles, shoulders, arms, wrists…..

And crash….the intense exhaustion that pushes me down.  Fibromyalgia.  I can never forget that I have it, but I do ignore it on the whole.   When the flare up comes and crashes me down there is no ignoring the invasion of torture surging around my body.   Blooming dramatic eh!   Anybody with Fibro or CFS or ME with tell you there is no drama about it, it’s ridiculously real.  Fibro Fog, heard of it?  Same with CFS – the foggy confusion turning your brain thoughts into a mush.   Well Mr. Nasty Fibro, Ive got Alzheimer’s you can’t get one over on me!   I have strategies, and things in place for the likes of you.

Living with dementia and coping with another disability is all about managing it.   I don’t take any medication for my Fibromyalgia.  Yes, that’s right, zilch, nada, none.    I have tried the usual Amytriptaline, Pregabalin and codeine etc, but each one has side effects.  I have already talked about this before but it doesn’t hurt to go over it.

Anything that makes my dementia ‘worse’, such as the dullness of thought, confusion, woolly headedness is not something I want to mess about with.   The medication for Fibro ‘wiped’ me out and I could not function.  Of course I know that with time they can get better, but I don’t want to risk losing any function for however length of time.  This is my choice.   I once had an intravenous infusion of Lidocaine and Oh my word it was the best thing ever.  ALL PAIN GONE after a few days.  I could walk more, I had energy, I could be NORMAL.   It lasted just under 5 weeks and then C R A S H  the pain returned.  Not just returned but with avengance.

To maintain this pain free normal life existence I would have to receive this infusion once every 4-5 weeks at hospital during over a couple of hours.  Not just me.  It doesn’t work for everyone but it did for me.  The sad part is that it is not available because of funding, I was lucky to have that one time funded.    One thing that came out of it was that I realised that without taking medication, my pain is maintained on a relatively even keel.  I have flare ups, like now, but they are never as bad as I hear some people because I live with the same amount of pain all the time.  No real relief but no mega crashes either.  I just have my normal bad crashes which I have learnt to manage.

As with my dementia I do what I can when I can, and when I can’t I rest.  I will cancel things if necessary and just stay at home, gently walking about when I can, sleeping a lot, and taking care of myself.   I will sit and sew if my wrists will allow me to, or ‘sleep’ through films on tv.dtcokxbxcaemejt

Having dementia and a co morbidity is just a case of looking how to manage both, in a relaxed and mentally chilled way, accepting what you can do, when you can do it, and riding the storm!

As always these are just my thoughts and opinions for what its worth 🙂