Memory Clinic and Driving

I had a call from the memory clinic, could I come and see the new Psychiatrist so that she sort out the form from the DVLA regarding my driving licence.  My Consultant Prof L, retired at the end of March and the new one could not confirm whether I was still fit to drive without meeting me.

She read my notes, talked to us about whether I thought I had any problems driving and we  ran through the usual test of the date, year, copy the shapes and count backwards from 100 in 7’s.  This is where I fall flat, I have always have problems with numbers and maths.  To me numbers are squiggles on a page that are meaningless, I do not see any patterns, connections, and I fail to understand any theoretical reasoning.  Quite simply I am absolutely rubbish at maths of any sort.  I got as far as; 100, 93, 86…. And that was it. Last time I had less difficulty.   My memory is visual, and so if I cannot visualize the amount say in, dots, I have difficulty in working out a strategy to come up with an answer.  Mr Hs has said he ‘takes away 10 and adds 3’, I am not sure I can still get my head round it.  Does this mean that my ability to process information has got worse or it is dyscalculia?

She explained the reason for my referral to a hospital nearer to my address.  The Younger Persons Memory Clinic is no longer taking people 60 years of age and over, also that all the services offered need the patient to be in the area.  Fair enough, so Derby will be the best place for me.

We talked about the medication of Rivastigmene being dispensed by my GP which is fine.  I told her of my experience of the medication enhancing my sense of the smell of food triggering a hunger response, which she immediately noted down in my notes.  She then proceeded to tell me of her Research Paper published regarding Dementia and smell. I believe she is the only Doctor to have published on this area of research.

I asked Dr V if she could arrange for paperwork so that I can donate my brain to Alzheimer’s research, and she was thrilled, because there is a lack of brain donation which holds back development in the treatment of the Disease.

She asked me whether I would be interested in taking part in her current research into bio markers, and I immediately agreed.  The neuroscience of my disease fascinates me and I think understanding what is happening physiologically and psychologically helps me accept my future demise.

Something that confuses people is the diagnosis of ‘possible or probable’ Alzheimer’s.  Dr V said confirmation of the disease can only be made post mortem!  Then she said that the correct diagnosis is Alzheimer’s Dementia.  ‘But,’ I exclaimed, ‘I don’t have dementia’, she started to explain that there is no set time when ‘people’ progress more rapidly with the disease.  She has known a patient to be still without dementia after 13 years, and one after only 2.  Like everyone we talk to she talked about enjoying life as much as we can now, and it scares the hell out of me.

I always thought I was a person who accepted things as they were so that I could focus on everything else, but it seems that I want to fight this, which of course I can’t.

 To explain how I feel I imagine that If you have to have a limb removed through disease, you may despair and desperately want it not to be true, but you can see the limb, feel the pain and know that there is a period of readjustment afterwards which although difficult will take over from the despair of before.  The progress of dealing with the loss can be seen and improved with a positive attitude.  When the problem is in your brain, you may not be aware of the rate the cognitive decline is happening, your thoughts will simply change without it seeming odd or wrong.  I am scared that with cognitive decline I shall not be aware that dementia is increasing, because then I can no longer fight it.

Daisy happy without cares.

Change; it is uncertain in its nature especially if control is in the hands of others.

…23rd March 2013

I have a call from the nurse at the memory clinic, but she starts with the fact that I live out of the area and they will refer me to somewhere nearer.  This is a bit of a shock as both SP and Prof L were ok with the fact of where I am, especially as they messed up so badly by forgetting me for two years before arranging for the scans and assessments needed.  I feel both upset and angry, not only have I run out of medication, she has not yet found out whether they can supply lactose free.  She gave me a response that the pharmacy had to contact the manufacturers to find out the ingredients.  I told her that there is a good website that lists all the UK manufacturers of generic medication and that Rivastigmene hard capsule, is the only one that does not have lactose as a filler.

She was also supposed to get me the paperwork for donating my brain for research.  This may not be important to her but it is very important to me.  I have now become ‘throw away’, a name on a record file that is ‘out of area’ and therefore not budgeted for, passing the cost to a different health authority.  I fear moving hospitals, another set of doctors, and nurses and buildings, and departments.

I have been told not to continue with the Rivastigmene patches, (cholinesterase inhibitor).  I only have one patch left anyway.  Now what, will my memory decline worse than before?  All of the instructions and information states not to stop medication, they indicate that the fog may come back with vengeance.

The last patch – today I took off yesterday’s patch, put it back in the packet, and handed the box with it and the unused one to Mr Hs to burn.  The patches must be burned or handed to a pharmacy to dispose of.  I will not miss the itching of the patches which have given me a bad reaction to them.  At Hydrotherapy this week, the therapist asked me if I had been paintballing due to being covered in angry red marks the size of a two pence piece.  Hopefully these will now stop itching and will fade in time.



Yesterday I saw my Doctor.  Following my final diagnosis, I need to start the process of retiring early.  She was lovely, she was empathetic, she took time to listen to me, she wanted to know how I felt about the diagnosis.  She emphasized the good point that I do not have dementia, I have Alzheimer’s Disease-no dementia.  She gave me a final ‘sick note’ for work that says that I am off work indefinitely.   I will need to take it into my work, hand back all of my keys and collect all of my personal things from my office.  How do feel?  I feel relieved.   Work have already replaced me, rearranged my office and packed up my personal possessions, even though they have never contacted me to see how I am.  So much for the caring organisation of the YMCA!  Only my work friends have kept in contact.

Now I feel like there is so much I want to do to experience life now, rather than plod on.  I feel excited about taking our boat out for the summer continually cruising around the canals.  I think Mr Hsg is hesitant and I am not sure why, he says “if the weather is good..”, but as our friends have pointed out they went out for 3 months and they somehow managed to dodge the rain and came back with a tan.   Maybe he thinks that we will both struggle physically, him with his knee replacement which he still has limited bend, and me with my Fibromyalgia, but we can take it at our own pace.  Maybe it is just the way he is, being the man and making the decisions. Give it up Mr Hs you know us women let you have the reigns!!   I know it will be good for us both.Image

Mobile wifi signal malfunction no blooming tinternet!


I hate forms!

I have always hated filling in forms, I get ‘bored’ after the first page.  I fail to read the instructions, and then cannot remember them when I do.  I get tied up in the semantics so that I don’t understand what exactly it is asking me to do.

I have to fill in a form to make an appeal, it was bad enough filling in the first 61 page monster.  That took me 4 weeks, this one has to be done today.  Why is everything so difficult?

Gave up and phoned instead…that was just as bad, I hate explaining myself, I get tied up with what’s in my head and what’s (not) coming out of my mouth!  I have a sheet of paper in front of me to read from that I wrote earlier, so why can’t I scan down and read it.  I forget things I should say, and say things that are not remotely helpful.

I tried to blog this yesterday but the blooming tinternet wifi dongle had no signal.  So much for a daily blog

I lay in bed this morning thinking about forums and talking to ‘she who prods me in the face with a paw and meows loudly 1cm away from my face’.   I must explain, I am unable to get out of bed first because I am furthest in under the gunwale, and Mr Hs has to get out of bed so that I can get up.   I am awake early, he likes to lie in.  Piewacket black cat chivvies me along every day to get up as early as possible and fill her’s and Dozy’s bowls.

Forums – forums to support those with Alzheimers/Dementia and their carers..I know, I seems crazy to think that sufferers should have the where-with-all to join in sensibly…well, let me tell you I and some others still have some live brain cells left and will continue to use them for as long as possible.  Anyway, I digress.  Support I thought, that would be helpful, and yes they are lovely lovely people, but reading the threads are TERRIFYING for a sufferer as it is full of carers sharing their stories and sadness of their loved ones whose brain cells have died.   Bloody hell, I thought, here I am wishing to get the absolute most out of being compos mentis, only to read how I am going to make my loved ones suffer when I am not.   It feels like the things that I want to talk about, cannot be spoken about and needs to be hidden from the carers….It is too raw, and too honest to be openly spoken about.

Living Will – I was unable to find any threads about those who wish to have a living will.   I want one, hell’s bells in no way do I want my family to remember me with such sadness, and trauma of having to care for me.     I have talked it over to Mr Hs and when the time is right, when I am no longer me, should I become ill, pneumonia or such like, no way do I want any treatment.  No resuscitation, no treatment end of..

And now to go get food, because the fridge is empty and Mr Hs will need feeding today.

Making stuff from scratch in the wild

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I'm a 46 year old lady with dementia but living with positivity and optimism

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reflections on a passing life

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