What was My Life like then!?


I suppose that’s it is only right that I give you a little insight into why I think I am an any position to advise, or inform you about anything related to Dementia.

So, I’ll start with the time I first knew something was not quite right. It started in the late 80s, early 90s when I was a Primary School Teacher. My life was good; good family life, nice house, and no mortgage, a great job and a very rosy future, or that is what I thought.

I can remember being on Playground Duty, everything seemed fine and then, for a split second, I felt the whole weight of my body. It was like I was being separated from me. I was aware, but I could feel gravity on every single part, pulling me to the ground. I knew that I would hit the floor at any moment, but that is not the strange thing, I knew I would then be looking down at my body, in a heap. I know what you are thinking… drinking… on the old Wacky Baccy, or just plain Cuckoo! The kids running around the playground can have that affect on you sometimes, but this was so different. It felt as if I was experiencing my soul leave it’s host!

This was a split second moment, but it changed me forever. I stood there, back in reality and I had wet myself: not a lot, but enough to be concerned. I certainly didn’t want this to happen again! I told the Year Leader, I wouldn’t be able to take my PE class. She told the Head and she told me, in no uncertain terms, I had to. It wasn’t the best of lessons. I think it was from that moment on that my problems got worse.

My local doctor didn’t really do much, I think he thought it was a ‘bug-doing-it’s-rounds’, but after several appointments and with me now finding it harder to walk, talk, think, or even eat without struggling, decided to make an appointment at the QE Neurology Department in Birmingham. This time is really hazy, but I know I went in for the appointment and didn’t come out. Apparently I was quite agitated and a bit depressed, no surprise there then. So that was when they started me on anti-depressants for the first time. I don’t remember much until about 2001, that was when they were weaning me off the anti-depressants I was then addicted to, onto a safer option! They carried out many tests and finally diagnosed, Neuralgic Amyotrophy. I had no idea what this was and had never heard of it before. The Doctor looking after me, was young, keen and wanted you to know he was in charge; I was just there to give him something to work on. I can remember him saying to me, after being daft enough to ask, ‘What’s Neuralgic Amyotrophy?’ Neuralgic…. Nerves…. Amyotrophy… Dying… and that look….. u n d e r s t a n d!? I did and would have hit him, if I could but I couldn’t. I had lost all use of the right side of my body, including my right arm, hand, leg and foot. I couldn’t feel my right leg at all. I found it hard to talk, but I’m not sure if that was down to a physical thing, or just the inability to put words together, or, of course the cosh that was anti-depressants. My face was a mess; the right side seemed to have given up trying, it was numb and limp. People say it is not as bad as I think, but how I think it looks, is bad enough. There was, and still is, a lot of muscle pain, as I remember, this apparently is due to the spasms causing the muscles to cramp up. I also had/have this toothache type pain in my face, right eye, ear, teeth and it would treat me to shooting pains into my groin, back, down my leg, under my foot, into my elbow and throughout my right hand.

By 2002 I was dealing with my troubles and getting on with life, I suppose. I had a new Neurologist and he was amazing, the only doctor that I thought cared. When I was there, he was too; he would listen, answer questions and seemed honestly concerned. He diagnosed Left Temporal Epilepsy and treatment for that had a major impact on my well-being. I was having major seizures every few weeks, but I didn’t know when, only when I came around feeling like I had been in tumble dryer, after wrestling a mountain gorilla and longing just to sleep, I knew what had happened. Interesting thing, at that point, I didn’t care about anything, I’d often wake up with broken fingers, cuts, twisted wrist, bruises and bumps that shouldn’t be there, but at that moment, I just didn’t care. I think if my arm was missing, I would have still just gone to sleep. After, it hurts like hell and I feel like I have just been rebooted; I’m buzzing, but my mind is scrambled. Do you remember when I told you about the first time. That moment in the playground and feeling my soul leaving my body, well the doctor thought it could be related to the Epilepsy, or the damage to my brain. These seizures were not too frequent, however, I was having these continual moments what I now know as, Absences. I would become aware that I’m awake, here and lost in that moment, pulling my self back into this world. This was a horrible sensation and it was happening again and again!

I had a leg brace too, again thanks to Mr. Sturman, the excellent doctor I mentioned above. I was going from strength to strength.

Then, in 2002, I got the chance to go to Portland College in Mansfield. This was a place to help disabled people get back some of their independence. This was a good place, it helped and changed me a lot. Up until going there, I continually went through that, ‘woe-is-me!’ state; “Why me?….it’s not fair… I’m really, really bad!” Within a week, my outlook on life had changed. This is all thanks to some great teenagers that were there for treatment too, but they were total paraplegics, needing 24 hour care. They were amazing and I will forever be grateful to them for showing me how selfish and stupid I was. I’ll tell you more about that time I shared, if you ask?

I was there for a year and it was a very good year indeed. I had become very independent, to the point that I no longer wanted anyone to be stuck with the burden of looking after me, not even my wife. This was after being told that the MRI scans showed significant signs of decline, particularly in the left temporal lobe and after asking what this meant, was told that, if it continues to develop damage at this rate, I would have about 5 years. This was the first time I had been told I would die. That was about 16 years ago, so what do they know?

My intention was that when my time to depart this world came, I would die on my own, doing what I wanted to do. I didn’t want my wife, or children to be stuck with me as a burden. I made it impossible for my wife and she found someone else; looking back, I could have dealt with this much better. As for my children, I tried to give them the space to grow and become themselves; they were grown up by then.

In 2007 I had my first heart attack and ended up having a stent fitted. This meant more tablets and a lot of advice about what I was eating and the lack of exercise I was getting.

I went a bit off the rails; getting a narrow boat, then a motor home and just going anywhere I could. I did this with my fantastic friend called Finn. He has been with me for nearly 16years. Finn is my support dog, a Border Terrier. Like me he is getting on a bit now, but still thinks he is in his youth! Although we had lots of adventures around England and Ireland, I was having more and more problems and trying to keep them to myself was becoming impossible to do.

My eyesight was a bit of a growing problem. My whole vision is on the move, everything I see appears as though on a grid with each segment rotating; it’s like I’m looking down onto a swirling cup of coffee. The Eye Hospital couldn’t do anything for me, as the optic nerves are ok. So, the problem was related to the brain processing the images.

I was losing my balance, constantly nauseous and having growing bouts of where it was impossible for me to stand. The ENT QE carried out tests and diagnosed the onset of Ménière’s disease. All the hearing in my right ear went and my left was getting worse. A BAHA was screwed into my head and helps greatly, but it does make the Tinnitus a lot worse in my left ear!

My personality was changing and I knew it; I was becoming aggressive, tearful at anything and really an emotional wreck.

The final blow was when I had to stop driving after turning right onto the very busy Maypole island; luckily no one was hurt, but for me it was the realisation that I could hurt others!

I moved into my own room, with a telly and that was my life… tablets… sleep…telly… Lost in my own world and becoming more isolated from reality with each passing day! Going out was limited to hospital appointments.

My diet was just about eating anything that was in front of me and as for exercise, it didn’t really figure in my day. I wasn’t able to go to the toilet anymore and had to rely on a leg bag, IC Pads and regular enemas. There was no real night and day, I didn’t really have a time that I went to bed for sleep. I would just drift between a dream state and what I assumed was the reality of being awake. I wasn’t doing anything, I was just waiting. Waiting for what, I’m not sure, I was just wasting a life. It was like crawling uphill to the edge of cliff that led to oblivion. The closer I was getting to the edge, the more the dream world that was waiting, became my reality and I thought that when I took that last step, I would plummet and I would be lost, completely in a world that no one, but me, would understand.

The most important part of my life seemed to be my reliance on my medication; I lived for the next intake, my life was controlled by my medication.

Here is my daily medication regime and nightmare:

Aspirin 75mg 1 daily in morning HEART
Anti platelet agent. Stops blood clotting. Following heart problems 2007 and stent fitted.

Atorvastatin 80mg 1 daily at night Maximum Dose HEART
Statin. To lower cholesterol in blood. Following heart problems 2007 and stent fitted.
To be used when diet and life style fail to achieve lower cholesterol.

Bisoprolol 5mg 1 daily in morning HEART
Beta blocker. Protect heart from too much activity. Following heart problems 2007 and stent fitted.
Not to be used if heartbeat below 60bpm?

Candesartan 16mg 1 daily in morning HEART
Relax and widen blood vessels. Help to lower blood pressure. Makes easier for heart to pump blood. Following heart problems 2007 and stent fitted.

Bendroflumethiazide 2.5mg 1 daily in morning HEART
Water tablets. Reduce fluid retention. Lower blood pressure.

Glyceryl Trinitrate 500microg when required. HEART
Helps with heart pain and breathlessness

Donepezil10mg1 daily at night DEMENTIA
To help mild or moderately severe dementia
Slows down the breakdown of acetylcholine in in brain. Acetylcholine = neurotransmitter… vital for brain cells to communicate

Risperidone 0.5mg 1 daily at night ANTI-PSYCHOTIC

Betahistine16mg 1 – 3 times daily Morning, afternoon and night. Ménière’s
Vertigo, Tinnitus, Hearing loss. Helps blood pressure in inner ear. If I miss I get continued awareness of blood flowing in my head at each heartbeat.

Cinnarizine 15mg 2 – 3 times daily Morning, afternoon and night. Ménière’s
Bad Nausea, Vertigo, Tinnitus, Hearing loss. Helps blood pressure in inner ear.

Gabapentin 300mg 1 – 3 times daily Morning, afternoon and night.EPILEPSY AND NEUROPATHIC PAIN

Lamotrigine 150mg 1 twice daily Morning and night EPILEPSY
Blocks signals to the brain that trigger epileptic seizures

Levetiracetam 1.5g 1 twice daily Morning and night EPILEPSY
Help treat seizures predominantly from left temporal side if brain.
Add-on to Lamotrigine to help tonic clonic seizures. Grand Mal

Citalpram 40mg 1 daily at night DEPRESSION
SSRI Helps with panic attacks and depression

Mirtazapine 45mg 1 daily at night DEPRESSION
Antidepressant

Venlalic XL 75mg 1daily in the morning DEPRESSION
SNRI not sure who prescribed this. Severe side effects … increased episodes of severe muscular pain in body, increased Ménière’s problems, either sleeping all the time, or not at all. Took long time to settle

Lorazepam-1mg 1 twice daily Morning and night EXTREME ANXIETY
Helps with anxiety, stress and panic attacks

Pregabalin 100mg 1 twice daily Morning and night SEVERE NEURALGIC PAIN
Helps against hot, sharp, toothache like pain, in right side of face, ear, eye, arm and hand, teeth and gums, lower back, groin, backside, back of leg and inside leg, below foot.

MST 60mg 1 twice daily SEVERE MUSCULAR PAIN
Helps against severe muscular pain when spasm in legs and body cause muscle to become rigid and cramp like. Totally debilitating and although mainly during the night, it can come on at any time without warning.

Oramorph 10mg/5ml when required SEVERE MUSCULAR PAIN
To relive bouts of muscle spasms and related pain during day

Omeprazole 20mg 1 daily in morning ANTACID
Reduces acid in stomach. Protein pump inhibitors. .

Salbutamol 100 micrograms every 4 hours ASTHMA

Salmeterol 50 micrograms 1 twice daily ASTHMA

Cleaning Modulite 100 micrograms 2 twice daily ASTHMA

Senna 7.5mg 2 daily at night

Ispaghula husk 3.5 1 twice daily

Micro-Enema 5ml every other day

So there I was, stuck in that place, alone in my head and getting further away from reality and life, the quality of which was zero. Then, I got that final blow…. you have Dementia….. and my plea to know… Is it…. too late?

This is a brief look at me then… so what is happening in my life now?

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