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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Crash…

That’s what I am talking about. Last night the pain started. spikes1 There 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 🙂

Diary thoughts with dementia

Sometime life feels like it’s in limbo. Waiting for something. Thinking I should always be active and not sitting alone quietly sewing or enjoying a film on TV. Waiting for time..to what..pass? I don’t know, maybe this is just how dementia feels like? Does it feel unhappy? Nope. It just is how it is.

Sometimes when I have a diary full of meetings, and events, I just roll with whatever that day brings without feeling I have had any input into organising it but have simply turned up and been a small part of it. A big hand that fills my diary and hands it back to me smiling. “This. This is how you will fill your time in a pleasant and meaningful manner“. I smile as I take the diary and look with curiosity to see what pleasures I have for the coming week.

Then there is the ‘To Do’ lists I have written down on the righthand page of my Moleskine Diary. This, however, gives me a hidden creeping fear, no not fear; anxiety, yes that’s it. Anxiety. I have agreed to do this thing, and now I am scared that I cannot carry it out or finish it, or even start it. Always in my head ‘I can do that’ , until the time comes to start it and then the dementia reality sets in. The hesitation of indecision, the confusion of my own instructions where everything falls apart. Followed by the quiet talking to myself – “I can do this, step by step. Don’t overthink it“. Then I when I finally start I am more confident to say whether I can do it, or whether to say I tried but it is now beyond my capabilities. Admitting when you can no longer do things can free you up to do more of the things that you CAN do.

So, in reality I have a mixture of a Diary life, and my chill out self preservation life. I attend meetings, give talks about my dementia, am part of a group working towards making my local town dementia friendly. Then I have my withdrawal from the world life where I stay at home, alone, enjoying my own company, doing a bit of housework, and a bit of craftwork. But, I also have my craft workshops for dementia in my diary that I attend and love because it gives me inspiration, gives me a place to be with other inspiring people living with dementia.

How do you educate the world about Early Onset Alzheimer’s/Dementia – one group at a time?

I thought about the meeting with the pilot group for Early Onset Dementia and Alzheimer’s on Saturday and how it made me feel and now I have had time to mull it over, I can think about it a bit more dispassionately which is what I need to do. (Please see the last post for details).

Firstly, am I over reacting? Yes I am, but it is true that many people working with professional bodies; statutory and non statutory, such as the Alzheimer’s Society need some education for their workers. I understand how easy it is to fall into a role of; support worker, organiser, being a person who is outside of the disability or target group, and focus group of the particular organisation, but that does not excuse the organisation from being educated to understand how to ‘walk in the shoes’ of those they wish to support by listening more and organising less.

What were my expectations? Sadly I think my expectations were a little too high for my own good! I should have expected less and maybe would have been content with how the meeting panned out. After all it was a pilot to find out what people wanted.

I have always been adamant that my hubby is NOT my carer he is my husband. I cannot think of a time when someone will need to care for me, and right now my present is important for me to wring every last drop of control and living well out of life. I cannot imagine him deciding what I would like to be doing right now, I have my own ideas and they are definitely not the same as his.

I know my last post focussed on individual conversations and did not elaborate on the bigger issue for me, so I thought I should balance that up so that you can understand exactly where I am coming from.

My issue is with the lack of education about Younger Early Onset Dementia/Alzheimer’s. (I think my next blog will be about the difference between the two so don’t go too far away).

Because Alzheimer’s and Dementia is being diagnosed much earlier than it used to be the Support world needs to catch up. Before, people were diagnosed with dementia only when their symptoms were blindingly obvious and by which time they were not able to understand that they themselves had a problem. This is about what is normal for each individual person, what is normal for one person is not for another, so someones difficulties must be outside their own normality. At this stage the family will be heavily involved (hopefully) in getting a diagnosis for their sibling, parent, spouse, child and also they may well be signposted to the world of Support organisations be it in the medical or voluntary sectors. That is when the services of Alzheimer’s Society has been a wonderful support for those families as a whole.

Today, diagnosis can be much earlier, right at the beginning of Alzheimer’s Disease, sometimes with only mild cognitive impairment (MCI), and as such may not be classed as dementia. The labels do not really matter because basically they are all under the same umbrella of dis-eases in the brain.

You walk out of your consultants room with this devastating diagnosis feeling absolutely shell shocked. You have no questions to ask yet, so are given a leaflet if you are lucky about alzheimer’s disease and dementia. You go home to start the first day of your life as a different person with a terminal disease. You may only be in your 40’s, 50’s or 60’s when you should be looking forward to the rest of your life planning what to do with family, work, or retirement.

This is where the services for people with Early Onset Alzheimer’s/Dementia (EOAD) fail because there is practically no provision. The only groups organised by many organisations are for elderly people and their carers in mid to late stages of dementia which is not appropriate for EAOD.

I started to search the internet for anyone who was like me, who I could talk to who understood how I was feeling and what life was like for me and found several wonderful people in online groups who chose to allow ONLY people living with the disease. I found the Dementia Alliance International, Facebook groups and joined them all. I have become involved in Dementia Mentors a group who can talk one-to-one online with newly diagnosed people to give an honest view with how to live well and positively with the disease. We are people from all corners of the world and I am so grateful to have them as friends. These groups are for those living with the disease in its many forms and are organised and run by the same people. I have been given a voice, and I am not a patient.

We all look to educating anyone we can about EOAD, to understand that we need support but we need to be empowered to do it ourselves.

When I was at the meeting with the ALZ Org I realised that they just did not get it. They had no understanding of Young and or EOAD, probably because they were so used to people with more progressive stages of the disease. They are used to organising people and activities to what the carers have said their partners have enjoyed in the past.

Working with Younger EOAD is different because we can mostly communicate well, and our intelligence is not affected, and we NEED to be in control of what we are doing until we no longer are able to. We need to live normally with our dementia the best way we can making our own decisions, we need everybody to LISTEN to what we are saying, understand what we are saying and not dismiss us to talk to our partners.

Partners do have a role to play in groups we attend for medical or social events because a lot of the time they drive us there, they support when we are there and support us at home, but primarily this should be our group, and there is no reason they cannot support each other at the group. I guess I am saying there is nothing wrong in have two separate sides to a social group, living with dementia on one side, carers on the other, coming together at times and respecting each others voices.

I am going to try and make a difference to the group that met through the workers who got it so wrong on the day. If I don’t try then nobody will learn anything.

Wish me luck as I feel it will be a hard slog and long process.

Thanks for listening.

“I feel like something at the bottom of a woman’s handbag”

Saturday – 28th June 2014 – Alzheimer’s Meeting

I was invited to a meeting to form a pilot scheme for younger people with Alzheimer’s and Dementia. It was quite a way to drive and we got to a place which was in fact in a building in a Chemical Company which supports the charity Alzheimer’s Organisation; their conservatory which is on the side of a very nice cafe/restaurant.

There were workers from the Alzheimer’s Organisation from three different surrounding areas in county and I got to talk to two of them. The are all enthusiastic and clearly caring people. People arrived gradually until there was a good roomful of people living with dementia and their partners and carers. I initially talked to two of the staff full of enthusiasm and I passed a couple of flyers for Dementia Mentors website which they said they would look at. As others arrived they seemed to know each other I think from another group they attend. The conservatory had tables and chairs set out in a cafe setting and people came in and sat randomly around the room or in groups of friends. Because of how we were all sitting facing some with our backs towards others it was not conducive to chatting and getting to know anyone you didn’t know, which for us was everybody. No sooner everyone had arrived, we were told to split up into three groups and talk about what sort of group we wanted. The friends stayed where they were, others gravitated towards the far side of the room and hubby and I were asked if we would join the table behind us with just two people on because the guy had mobility problems. The guy I shall call Sid clearly had mid stage dementia and did not speak or appear to have awareness of what was going on. His partner on the other hand did not stop talking. We had a worker with us who was going to facilitate this discussion between the four of us. (All names have been changed to protect peoples identity).

Phil the worker was enthusiastic and started throwing some ideas about for us to talk about and ‘Sally’, Sid’s partner started to talk about what she wanted from the group. I don’t want to see leaflets on tables, she said, I don’t want to hear anything about dementia, I want a social group where we can go out and enjoy ourselves. Right, that is perfectly clear. I am tired, she explained, of everyone talking about dementia, I want somewhere where that is not about illness at all. (Actually Sally, I think you need a support group for carers and some respite care for Sid, I thought at the time).

I had up until this point given some ideas, discussing a newsletter, learning new things in their new life with dementia, such as photography, cooking, creative writing mini courses, days out doing group photography, walking etc. The more Sally talked the more puzzled I began feeling. Hang on, I thought we were here to talk about a group for people with dementia, at least that is what the conversation I had with the ALZ worker I had met after being diagnosed who said there was no support groups suitable for me. I could not assume that Sally was Sid’s carer and I had to know, so I asked her if she had dementia? No, she answered, I am with Sid. I had this sudden realisation that no-one had asked Sid what he wanted, so I asked him. With his progressive dementia he couldn’t really give an answer, he goes to another day care place and does a lot of memory activities with them, and seem to be confused about where he was as he was talking. He sat not speaking having difficulty holding his mug of tea, Sally telling him to put it on the table before he spilt it down himself. I could see my hubby watching and wondered what he was thinking. Sid did not appear to want to put the mug down, or do as he was being told. Sally was off again saying the things she wanted to do, and I spoke to Sid. ‘Only people with people who have dementia can understand what its like to live with it’ I said to him, and he nodded in agreement. I asked him about the day care he goes to and he tried to talk to me about it. He then said, probably the most important thing that was said in that room “I feel like I am something at the bottom of a woman’s handbag”. Do you mean being here I asked him pointing around, ‘No’ he answered. Ahh you mean all the time I put back to him understanding how he was feeling.

The more I listened to Phil and Sally talking, and hearing the animated voices around the room the more I realised my expectations were far too high and I was not enjoying the experience.

The discussion was over, time was up and it was time to go! Before I left I briefly spoke to a worker and said that I thought it was going to be about people living with dementia wanted, and was a little disappointed to hear so many carers saying what they wanted. “I guess it is about both” was the answer.

Okay, how this meeting made me feel:

Angry
Silenced
Invisible
Like being treated like a ‘patient’
Cheated
UPSET

I thought this was going to be about what we, the people with dementia wanted out of a group for support and social activities that we could do with others, and that includes partners and carers who understand that sometimes we say the wrong thing, behave in a way that may not be quite right. It is right the partners should be there, but let all those who live with dementia, have their own voice, their own control, and their own place to keep their minds active, not something that is organised by everyone else.

How many websites, groups, and advise site both professional and amateur are there for carers. How many forums are for carers? Many. Why is this, it is because what do you think when you hear someone has dementia? You think of an elderly person towards the end stage of the disease, not always knowing who family is, someone who has lost the understanding of what is happening around them, someone who may be shouting out and being difficult and finding it hard to communicate.

Well that is at the end stage, not the beginning, how do you know that you do not already have some kind of Alzheimer’s in the making? Give it a few years and when you know something is ‘not quite right’, something simple such as your visual perception not working right, not keeping up with work, you will be wondering whats wrong. If.. if that happens and you are in your 40’s, 50’s and 60’s you will want people to treat you as they would want treating themselves, not to talk as if you no longer have a voice or part to play in the control over your own life. Memory Loss is not loss of intelligence, get it?

I just want to finish saying:

I AM NOT INVISIBLE, I AM INTELLIGENT, I CAN STILL TALK TO YOU, UNDERSTAND YOU AND HAVE A DISCUSSION ABOUT WHAT IS GOING ON IN THE WORLD.

Please don’t think that by helping our husbands or partners that it equates to giving support to me.

Thank you for listening if you got to the end of this.

Birthdays and colds…

I have a nasty cold and have been laid up for a week. It was my birthday yesterday – 61, where has the time gone? I sat in my chair all day feeling absolute pants. I had phone calls from those who care for me but none from my family. My niece J did not send a card, and I think that maybe she did not receive my Christmas card and present to her, but because they never have any contact with me I would never know.

I have been thinking about the cards I make, how difficult is it to sell any when the world and his wife have decided to make cards also. I still have this urge to share them with others so will think about how I do this.

I was listening to a Radio 4 program which was discussing the dangers in the Winter Olympics being held in Sochi at present. Is it too dangerous? Young people are being injured…What a load of tosh! This year snowboarding, half pipe and similar events have been included and the enthusiasm and skill at which the young have embraced the sport is stunning and infectious. However, the health and safety ‘police’ are asking whether we should allow our young people to take risks of injuries! Good God can they hear themselves speak. Ask every young person if they are willing to risk their life to live it to the fullest and I have an idea not one would say no.

As Eleanor Roosevelt said:

The purpose of life, after all, is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience.