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.

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Daisy happy without cares.

Calke Abbey, and the Memory Clinic

Earlier in the week we walked round Calke Abbey House.  We have been going there for about a year but had yet to visit the House itself.  ‘Don’t go too early in the season’ we were advised ‘it is freezing’.  So once we felt it had warmed enough we got our tickets and entered the house.  The house is wonderful, full of rooms randomly littered with ‘junk’.  Furniture, items of curiosity, toys, stuffed birds, fossils, rocks and books scattered everywhere.  Very few of the rooms are set out into a representation of a liveable state.  There is a kind of reality to seeing the rooms cluttered and packed with curious as they were left.  The house never got electricity until the 1960’s and remains behind the times.

We had been round the house and having gone through the cellars came out into the courtyard by the stables.  My phone rang and it was Nicky from the Memory Clinic returning my call.  ‘Do you have time to speak she asked’, I looked around there was a woman over in the far corner talking with Mr Hs, and I answered ‘yes’.  She then explained that Professor Lindsay had retired and the new consultant had been passed my case. The new consultant again is involved with academic teaching and research.  However, the reason that they will not treat people out of area is because of the associated services that are offered, such as additional support for applying for benefits, support etc.  I can understand what she is saying but I feel totally abandoned.  I don’t want to have to go through starting again with another set of Doctors, more tests saying the same thing.  I feel upset as she is talking, I realise she is the messenger of ‘sorry you are not in our area-not our problem’.  I am sitting on a ledge leaning against the stone of the building in the courtyard, a tear escapes my eye.  I can’t believe that I am getting upset that she is telling me the door to the Younger Persons Memory Clinic is closed to me now.  I think I am scared of the change.  There is no way I want to go to Queens Hospital at Burton, so I will have to go to Derby Royal Infirmary.  They have no Younger Persons Memory Clinic which means I will be treated in a predominantly geriatric unit with Dementia patients.  I am not geriatric, I do not have dementia, and I am scared of being with people who do.  I don’t want to see a possibly older version of me.  There is no involvement with research there, and I am guessing no possible options for new treatments.

There seems little choice but to accept that I have to transfer my treatment to Derby RI.

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As I sat and talked on the phone, I pressed the button on my camera and took a photograph. It remains an image of that conversation.

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.

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Just another day…

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I woke up having slept heavily (apart from the usual 4am check the clock time) but did not feel refreshed.  I have pain in the back of my neck and still feel exhausted. My Fibromyalgia is still bothering me.

Thursday I have an appointment at the hospital for a check up on my eyes.  I am tired of all these appointments, I don’t want to go and sit and wait my turn, talk to doctors, then leave with most of my day gone.  Good news though I am being referred to the Glaucoma nurse for check-ups rather than the consultant because my eye pressures remain static with no damage still.  This means it is only once a year and one thing I do not have to worry about, yay!

Quick shop locally, then home …please, as soon as I sit down I am out and slept until 5:30pm.

I wake on Friday with the back of my neck and the side of my head painful, I lack energy and am hoping we can stay in as my batteries are empty and I need to try and recharge them.

I think about Tuesday and chatting with my Daughter but cannot remember what we talked about, I wish I did because I would like to write it down.  I remember how it felt being with her though 🙂

8th March 2013 – A most bizarre appointment!

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We went to Croxall Lakes for a spot of bird watching and photography where I managed to get rather blurred photos of a white Egret, Shelducks, but some interesting photos of a misty distant gravel pit workings.  I also got my first photo of the year of wild crocus albeit a little blurred.  I really need to learn how to use my camera which is more difficult for me these days as  I can’t seem to retain new information.

I had an appointment with Occupational Health arranged by work as a stage towards early retirement, which was indeed most bizarre.  The Doctor reminded me of a meerkat but slower.  His speech was void of any superfluous words apart from the continuous “thank you, thank you, thank you” indicating that he wanted me to stop speaking.  These were muttered under his breath barely audible but unmistakable.  He was only interested in answering the questions that was in the letter from my work.  The only difference deviation was the form he thrust in front of me to fill in.  I looked at it and said ‘this is for extreme depression and I am not depressed so there is no point in filling it in’, he seemed a little thrown by this and proceeded to ask me questions reserved for depressives regarding self-harming and suicidal tendencies.  Now, the reason for being there was to start the process for early retirement but for this Dr, he was only there to answer the questions in the letter from work and nothing else.  He typed the answers with me sitting beside him and I could feel his discomfort with my proximity,  and as we all left we shared the lift where he silently kept his gaze straight ahead barely acknowledging our presence.   I cannot imagine this Doctor ever being able to work with patients with his total lack of empathetic connection with people.  In a copy of the letter which he emailed to me, he has asked my work to give me my options for early retirement!  I fear this will be a long process due to their minimalistic human resources.

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