Monday morning, another week goes by

Forgot to order my medication and have run out!  Although, I was thinking about the medication I take now that it is probably true that I do not have dementia.  Having to wait for an appointment makes me feel weird to be taking meds for dementia still.  Do I stop them slowly, or are they still useful with whatever diagnosis I end up with, especially as Extrapyramidal Disorder has a proponent of medicine induced symptoms?

Unlike me to totally run out of medication, but my memory problem hasn’t changed. My confidence has still taken a tumble, and I still get overwhelmed at many things; too many people around me, being asked to do things, sounds, lights, and the need for constant retreating to being silent in my own home to recoup is growing.   The only thing that has changed is that I am becoming less mobile. My muscles don’t appear to work as well as they should, and of course the pain level throughout my body has increased, including the frequency of it.  I cannot walk far without needing to sit, I cannot get up off a chair easily.

I also feel a loss of community, which I know is absolutely ridiculous, but I do.  I felt I had support with all the wonderful people I had connected with living with dementia, but as I said before, now I feel a fraud.  Not to say that there is still not something that is going to replace the dementia diagnosis with another.  There is a sense of guilt that goes with the relief of ‘thank goodness I don’t have dementia’ towards all the people I know who do.  This doesn’t mean that I will stop doing what I do in my community, because I do have a knowledge of what it is like to live with a cognitive disability and feel it is important for someone to speak out to change the lack of inclusiveness in decision making.  I have witnessed some paid staff deciding what people living with dementia want…and I can tell you its not always WWII songs!  There are also some amazing people who get it and provide an absolute lifeline of  normality for many.  So, Yes, I will continue working hard as part of my local town’s Dementia friendly places team.

So what’s next for me?   I think I need to increase my arts and crafts activities.  I need to get my mobility scooter fixed, it’s broken at the moment and is a sad reminder of the difficulties I have in organising things.    Most of all, I need this appointment with the neurologist to find out what on earth is going on in my head and body.

Hopefully soon I can start writing about something else when all this is settled!

Thanks for reading.

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Onwards and upwards!

 

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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Strange times and the loss of routine, with dementia

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My goodness it is indeed a strange and dreadful time it is with the Corona virus throughout the world.    I have been struggling a bit with staying in, well, more than a bit but trying not to give in to it.  Dementia certainly doesn’t make things straight forward.

I have lost my routine.  Never thought it would matter much, but apparently it does even if your symptoms of dementia can still be seen as early days.  Who knew.  I learn something every day about myself and my disease.  Of course what this does mean is that everything has stopped….the ‘non existent’ follow up appointments with consultants to find out what my new (if any) diagnosis will be.  Appointments to investigate why I am choking occasionally, and appointments that have been investigating why I have holes in my vision that doesn’t appear to be anything to do with my eyes.   Suddenly it all seems so inconsequential with what’s happening in the world.

How difficult it must be for those with dementia who simply cannot understand, or retain the knowledge of social distancing.  When someone is used to being able to go out of their front door and wander down to the shops,  go the local pub on a Friday night and then POW..suddenly everything changes and stops.  A daily walk can still be done, but the rest of the time distraction can be tough.   One of the things to think about is creating a memory/life story book.  Doesn’t have to be a book, it can just be on loose pages.  Get out all the photos and go through them.  Sort out childhood, working, holidays and any special time that was good.  Never focus on dead relatives, even parents because it can become too distressing.   Write some good times down, so that in the future you will always have a photo to look at some information about it and a topic to chat about, especially if it brings back happy memories.

Being shut away from the outside, I thought I would be doing lots of crafting, but somehow I can’t seem get my head together enough to do that, yet.  It will come when I have decided how to focus my creativity.

My confidence has certainly taken a massive dip, down to somewhere between staying comfortable and peeping over the parapet to keep up with what’s happening with the art group.   Which of course is re-wiring itself to the circumstances.  We will, hopefully, be continuing some art at home, via ZOOM, or by post.   Wish I could remember the details but lack of the exercise of having to try to remember things has seem to taken a toll.   This of course is interesting in itself because it shows that people living with dementia who are not going out, not joining in with activities socially of any sort are likely to become more ‘brain institutionalised’, than those who do things.    What I mean by ‘brain institutionalised’ is that treat someone like a ‘patient’ and they start acting like a patient.  Same with children really, you need to challenge what they can do and what they think they can’t do to inspire their brains to be stimulated into trying different things, and hopefully enjoying it.   Not sure if that makes sense to anyone, and of course it is only my thoughts on it.

So what have I been occupying my mind with?  I have begun reading again, something I stopped doing a year ago, because I was busy.   I have to argue with myself that you are never too busy to read!!   So, I have been wading through a series of pandemic/apocalyptic books… hahaha yes I have!  I love them.  I reckon I should be okay now if everything truly falls apart because I know how to arm myself and survive!!   Anyway the latest one is truly dreadfully written, which only goes to show I am at last reading like a reviewer again.  (Having reviewed books for authors and publishers).

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I cleared the detritus (wood) in my garden to one corner, ready to dig an area which will house my little orchard.  Today I had delivered an eating apple bush, and a big cooking apple tree (maiden – long single trunk)… my daughter bought them for me at Christmas.   Will be googling how to prune the cooking apple tree to get it to fit in my small garden and not being a very knowledgeable gardener, I shall be out with my secateurs and my mobile phone watching a YouTube video whilst I do it!  No problem, how difficult can it be? 😬

I have watched plenty of films and documentaries on Netflix, TV, and Prime, so I know how the justice system works both in the UK and USA, I also know more about psychopathic murderers..well you never know when it will come in handy knowing these things.  Of course I have watched some comedy programs, re-watching some favourites.

I think we will all be a little scared of venturing out when we are able but I also think that everyone will have learned how to slow down a little and enjoy peaceful times, and the small things in life.

Stay upbeat and well guys.

Gill x

 

 

New diagnosis, and a failing NHS service

I feel sad for the NHS, I feel sad for us all in the UK who use it.   Good services in the NHS is a postcode lottery.  Sadly, those of us living with Dementia in the North East of England the service falls short of acceptable.

Go on prove me wrong!

On more than one occasion have I heard it said by Memory Clinic consultants and Community Psychiatric Nurses (CPN) that “once you have a diagnosis then you don’t need any other [clinical] follow ups because there is no treatment”.  Yes, that has been said to me with the advice that there is no point in even visiting me to check on my progress.   I felt that I knew more than the CPN about dementia and put it to him the reasons why the service should be ongoing e.g.  developing more than one type of dementia.

At present I am seeing a consultant at the Eye Infirmary because I am having real problems with my right eye.  After a myriad of tests, it shows: there is no physical abnormality with my eye, nor blood supply, my visual field test is normal, but I am missing vision in a barcode pattern.   So, areas of vision is not being processed by my brain.    This is becoming a big problem for me because my vision is becoming blurred.

I recently saw a Neurologist for the first time in this area, after one of the practice GP’s referred me, who discussed with me the problems that I am having with intermittent swallowing  issues, and the fact I have not progressed with Alzheimers in over 8 years.  I sometimes choke when I am eating;  it feels like I sometimes forget how to separate breathing and swallowing at the same time. Not majorly problematic at the moment as I always cough – then sneeze explosively scaring the life out of all those around me !   We talked about how it may be that my brain has to really focus on what I am doing to maintain the attention to do the actions.  Including automatic actions such as breathing and swallowing.   She suggested that I may be able to be referred to someone in Newcastle who specialises and does research regarding people with atypical dementias (dementia that doesn’t follow normal patterns).   She would not see me again but would write to the psychiatrist I have seen in the Older Persons Memory Clinic (there is no provision for younger people in this area) and suggest that.

Meanwhile, one of my GP’s at the Surger also wrote to the memory clinic suggesting an MRI because I have only had a SPECT scan (which measures blood flow).  An MRI would certainly give a clearer picture of my brain.

I was sent an appointment for the MRI and had it done.  Then comes the waiting for the appointment with the consultant (Old Peoples Memory Clinic) to discuss the results…………………………….

But, there is NO appointment!   What do I get – a COPY of a letter she has written to the Neurologist, who is not seeing me again, to say that to:

1)  this raises the question of whether I have Alzheimer’s,

2) I have FTD, Frontotemporal Dementia and

3) Starting the medication Rivastigmene very early has indeed had a slowing effect on my dementia,

4) All of the above

5) She is..

“..leaving and will not be able to follow this up with her but she will remain open to the team at this point.  If she does wish to have a referral onto Professor G,  I would ask Ken S to either liaise with yourselves or discuss with my replacement about the possibility of a referral onwards if necessary”

Let’s recap:   Neurologist is not seeing me again,  Psychiatrist is leaving and has no intention of seeing me or following up on my MRI.  NOBODY has discussed anything with ME and has no intention to.  IF, if I want  referral!!   Of course I want a bloody referral, well this has been left to the CPN who appears to know less about dementia than I do.  This is based on my experience in discussing with him about dementia some of it he was totally unaware of.  Maybe this is because he only sees elderly people who are in the medium to late stages of their disease.

Am I fuming?   Too damn right I am fuming.  A new diagnosis to come to terms with is not just a simple, Oh, I’ve got FTD not Alzheimer’s, or Oh, I’ve got FTD and Alzheimer’s.  The prognosis is different, this is my life, my health that nobody seems interested in.  It took me 6 months to come to terms with Alzheimer’s, is this something new I now have to come to terms with?

 TEES, ESK AND WEAR VALLEYS NHS FOUNDATION TRUST – YOU ARE TOTALLY RUBBISH!

 

 

 

 

Singing for the brain..my way

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Sunday at the Coalhouse a micro pub/Real Ale bar.   Open mike night every other Sunday starting at 3pm.  Home by 8.30 or 9pm!

Of course my friend Lynn and I visit this, our local to enjoy the atmosphere, have a drink and listen/join in with the excellent artists singing.

I sound like an advert don’t I, or a drunken mate trying to get you to join us for a jolly good time

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What I am getting at is that singing is good for the brain, and Dementia Choirs are an excellent way to enjoy a pleasure we can all do which is sing.  It stimulates lovely memories of music you have enjoyed as a teen/mum/dad, on holiday, a celebration, or a time in your life you associate with a loved one.   I am not talking war songs or music from the 40’s here, I am talking music from the 60s, 70s, 80s and so on.   As more people are diagnosed with a memory or dementia related illness younger it is important that music is age appropriate.

I am not keen on joining a choir, I don’t have a particularly good voice, not that matters one bit, but I think I don’t like the organised bit of it.

For me I like to hear a live band, or a live singer.   Music in the Coalhouse can range anything from folk, Snow Patrol to Creedance clear water, even a bit of Hendrix.  Now there’s my type of music at times!   To these I sing my head off!  Lynn and I are occasionally give a Tamborine and Maracas and we go for it.

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Lynn took a picture of me and my daughter singing, playing and having fun.  This for me, is my singing for the brain.  Suck it up Dementia singing loud and out of tune!!!

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So don’t stop going to the pub when live music is on, stay for as short a time as you want, choose an ‘open mike’ event, where singers with a guitar, or singer songwriters just get up and sing.   Staying even a short amount of time is invigorating.  If classical music is your thing, then how about finding lunchtime concerts?   I find it difficult to cope with loud noise or too much background noise, but this is something I find immensely enjoyable because in a small place the level of sound is usually pitched correctly and not enough to blow your ears off.  Everybody is singing, you are so engaged that any other background noise simply disappears.

So get your positive pants on and go for it …

Change of site name!

Some of you who read my posts may have notices that I have changed the name of my page.  It used to be ‘Before I Forget’, and I realised that there are so many pages with that name which may be more important than mine so thought of a new name.

My URL is http://www.handbagwarrior.com, the domain which I bought a year or so ago, and I identify with the name handbagwarrior in my passion for helping to educate my local town about living with Dementia. I sometime feel like a warrior trying to support my local community to stop being ashamed of the  diagnosis and to start looking at how people can live well.   So, for me the most natural name for my site is Handbagwarrior: Dementia and me.   It has been a long struggle for me to identify who I am now.  No matter how others see me, it is how I feel about myself that I needed to change.  For a long time I have felt lost as me, when you leave work because of illness you lose your identity initially and when your illness is Dementia it felt like all that I had been disappeared then.

Today I am firmly ensconced in my new community.  I am a handbagwarrior in bringing about change in how dementia is seen within the community, and the provision for younger people and those with early diagnosis.  I work hard networking and trying to change perceptions.  I have set up a peer support group ‘Lets Meet Up, peer support group‘, and am formalising the constitution for the umbrella group ofLets Meet Up’.  So under this umbrella is also Lets meet up Art and Social Group.  Constituting the group will enable us to raise our own funds with the sale of things that the Art Group can produce.  My next challenge is to find a permanent home for the group to meet in every week.  My dream would be to have an empty shop to open up a Community Hub in.  Somewhere that groups such as ours can meet on a regular basis, a place that can house information about all the groups and charities that are available in the area.  Lots of peer support groups look for somewhere to meet, so I don’t think it would be hard to fill the place.  I have already made some noise regarding this and fingers crossed this will happen within the next year.  Of course its not just me doing this, I do have a side-kick, Lynn B.  She is a tireless whirlwind! and we bounce off each other as we attend meetings, appointments and network together to achieve what we need.  We are the working group of Dementia Friendly Seaham so there is a cross over in our endeavours.

So, my dementia is very slow progressing and during this time I have a need to get done as much as I can within my community for other like myself.

So, that is why I have changed the name. 😁

Gill x