Chapter 32: A few quick questions for the Neurologist

Dr DJ,

I wish to thank you for your work. Thank you for the time you spent. For your caring, compassionate nature and for your knowledge about such an incredibly, difficult subject. A subject which often has no simple easy solutions.  Thank you also for dealing with my family. You actually had to deal with them more than me. Thank you.  I am due to see you next Thursday. I have written a few questions that hopefully will get the conversation going.  Hopefully they are all questions you were planning on answering and you don’t need me to tell you what to talk about.

What happened on the night (7/10/15) I collapsed? What is the diagnosis?

Will it happen again?

Are there any pre-existing conditions present at the moment?

My recovery. What factor has played the biggest part in it? In the future what should I do/not do in order to aid my continued rehabilitation?

Is there any permanent damage?

Are there any genetic factors?

How long will it take for the brain to reach the point where it cannot repair any further?

Medications?  What is the future and for me and the medication (levetiracetam 500 mg bd) which I am taking at present?

Running another marathon? Any comments?  I ran one in 7/15 which went well.

Fish oil? Is it recommended?

The recent lumbar puncture and the MRI. Can I have copies of the results?

Chapter 31 : I love this cold wind

We (me and Lorna) find ourselves somewhere different.  In a room full of people socializing. My first impression is that we don’t know anybody in the room. We have nobody to talk to except each other.

Soon we find ourselves talking to a lady I have not talked to for twenty years (approximate). I tell her how, I am now retired. I no longer work. I am now enjoying my retirement. And I find myself listening as Lorna tells this lady that I was very sick; was in hospital for seven weeks and that is why I am no longer working.  And now the strange bit. This lady tells Lorna, “I thought something like that had happened. I thought there was a problem with him.”

And I am listening and I am thinking, “I thought I was going well. What has given everything away? Is it the way I talk or stand or move? Perhaps when I move, I move slowly and carefully. Perhaps I think about moving before I move. Perhaps I looked around before I move. I must have done something.  I’ve said all the right things. Well I think so. I talked about how good it was to be retired. I didn’t say I was forced into it.”

It was absolute pleasure to talk to this lady but I still want to know. I want to know how she knew I had been sick. What gave it away? Is there something I need to work on?

But we don’t have time to think. After some finger food we find ourselves socializing with an older man I haven’t seen for years.  Oh I don’t know how long it is?  Anyway I once again find myself listening as Lorna talks about me. She tells a man how I was in ICU for two weeks and then transferred to other wards. And this is the interesting part. He doesn’t believe her. He keeps looking at me and shaking his head and it goes on like this for a while. And Lorna keeps on saying, “No it’s true. He woke up slowly. Took ages to recognize anybody. It really is true.” And it is sort of obvious that this man looks at me and doesn’t think I look anything like an ICU patient. He looks at me and treats me like a normal person and this time I am not grateful. He seems to doubt my past. He doesn’t seem to believe what I have been through.  He looks at me and thinks I should be working. He thinks I should be out there. Playing my part. Doing my bit.

And I tell Lorna, “I think I left my computer on.”

And she says, “Don’t worry everybody does that. Nothing will get harmed.”

And I say, “But I forgot."

And she says, “Everybody forgets things.”

But that’s the point. I can’t afford to forget anything.  It will be noted and a mark will go against me. It will be recorded as further evidence.

And luckily on the way home I feel cold. The weather has turned. It’s not me feeling sick. It’s the wind from down south saving me.  External factors are causing me to feel cold. Not something inside me. I love this cold wind.

Chapter 30: It must be illegal

It must be illegal to fell this good. Physically I feel good. Better than ever. NO aches or pains anywhere. Not tired. Not upset about anything. Just grateful to be alive to enjoy the trees, blossom, plants and wattle birds.  I walk in the garden and closely look at the plants. I see new leaves on this plant. They weren’t there before. This plant has swollen buds which announce the imminent arrival of flowers. They should be about a month. Bit early but that’s the way things are nowadays.

It’s getting cold which means I am getting better.  Contrasting to when I was sick. Then my refrain was: “I feel cold.” 

It’s changed. Now when I feel cold I know. I know it really is cold. That winter has arrived. That other people will have a similar mantra. I won’t be on my own. Feeling isolated and different from everybody else.

Am I allowed to feel this good? I cannot think of anything that is troubling me. I go over my whole body. Nop, feeling good. Working well. Functioning the way it is meant to. Eating well. Stomach feels good. Relaxed and loose. Not over loose. Chest no tightness. All the muscles. No tightness anywhere. And the blood. Well you would have to do a blood test. Check for various levels. Not going to do that. No need

.

I go back inside and see at myself in the mirror. I look good. I’m sure I look ten years younger. That evening when having a shower, I weigh myself. Something I hardly ever do. I weigh 2/3 kgs less than my average weight. I tell wifie.  I say, “I’ve lost weight. That proves how healthy I am. I reckon I look ten years younger.”

She looks at me unimpressed and says, “Don’t forget in ICU you lost ten kgs. You didn’t eat anything. I wouldn’t celebrate.”

My enthusiasm cannot be dulled. I feel great and I reckon I look great, though it is proving a bit more difficult to get people to agree with me on the latter proposition. They can’t argue with me about the first suggestion which I will repeat. I feel great.

I am approaching appointments with Neurologists, Endocrinologists and other people. What will they say?   I have reached the point where I don’t care what they say. I can do what I want to do in my life. Does anything else matter? Well the future matters. Preventing problems in the future matters. I doubt any doctor will be able to tell me anything about that. Maybe they will. I will be there to listen.

Chapter 29 : I am not Batman

I am watching TV and finding it fascinating.  The show is about a group of people with cancer. The people were given both chemotherapy and an exercise routine. Most of the time they went straight from the chemotherapy ward to the gym. And it worked. The regime resulted in good outcomes. Better remissions, less side-effects and longer lives. It was all positives. I am watching this and thinking of only one thing. My recent experience in hospital. I was always going to the gym. Riding on the exercise bike, running on the machine. I was fanatical. Did this help me? Would it help other people? 

In the last week I have been busy.  Busy putting up blogs.  I am now responsible for four blogs. This is either too many or just enough. If everybody on the net had four blogs would the world be a better or worse place? You can make your own opinion on that or any of the blogs. The blogs are up there in the clouds.

Next morning before eight o’clock the silence is loud and powerful.  When it is this quiet I know it will not last. It will be replaced by noise. The noise of my grandchildren. The excited noise they make in the street which tells us that they are coming. They burst through the front door and the house changes. They are in control. Running, talking, playing and smiling. And pretending to fly. Bryce is running around with his arms outstretched talking about a helicopter.

Bradley is making his lunch which involves choices. I tell him what he should have. I don’t know his attitude. He may take my advice or not.  I turn on the coffee machine and grind some coffee. I am now officially better. No, not because I drink coffee. I am better because I can make coffee. I can use the coffee machine and make a passable cup of coffee. And I think it tastes better than bought coffee. My conclusion that it taste better is based on bias and not on scientific rigor.

There is a knock on the front door. It is time for a parcel. Again. A phone starts ringing. Which phone is it? I have no idea. It seems to be coming from the lounge room. If I check these phones I might find which phone is ringing and who is ringing. Lorna knows which phone to look at. She approves of the person ringing. She answers the phone. Meanwhile my grandchildren have ignored the phone and are watching TV.

Bryce is pretending to be superman. He and his sister are confident, happy and unconcerned about anything they cannot see. They are also unconcerned about anything that is not happening at the moment. If it happened yesterday or possibly tomorrow then it doesn’t exist. This may or may not be a good habit to develop.

Bryce says, “I am not batman.”  Glad he clarified that.

These grandchildren have a heritage which involves both Africa and Australia (Their Australian heritage could be seen as being British).  When some people look at them, they think the kids are adopted.  I look at them and see my grandchildren. I see my descendants. I see people who have inherited my genes. What do the other grandparents think?  What do they think when they see the kids. The grandparents on the father’s side live in Africa and don’t see their grandchildren as often.

 What do they think?

Do they feel the same connection as me?  The porridge of rolled oats is ready. And milk from the fridge is coming. The fridge door contains many different milks.  All have various amounts of fat. The grandchildren will eat the porridge in chairs attached to the bench top.

Chapter 28 : Thank you

I want to say thank you to all the people who phoned me and spoke directly to me to wish me well in my recovery.

I want to say thank you to all the people who personally sent an email direct to me.  My knowledge is that I have replied to all these people when I have received the email.  Sometimes my knowledge is wrong and I make mistakes.  If I have missed anybody then I apologize.

 

And the final group of people I wish to thank are the people who have bought a get well card, wrote inside the card, bought a stamp and posted the card. Every single card has been unique, contains honest writing and says something. It says that the person sending it cares. And when I receive the card it always stirred memories. Good memories. Memories of good times; of a good relationship.  I will now share some of these cards with you.

Dearest Alan,

We all appreciate your years of care and dry sense of humour and the wonder ceilingart! We hope your new chapter is one of recovery and a positive experience.

Fondest wishes

Dear Alan,

I was sorry to hear that haven’t been well, but very pleased to hear that your health is improving.

Warmest regards

Dear Alan,

When recently I booked an appointment to get my teeth looked at I was shocked to hear you are unable to work due to an illness. I do hope you are on your way to a complete recovery now and can turn your attention to other areas of life that bring you enjoyment and satisfaction.

Kindest regards to you and family

Dear Alan,

You will be pleased to know I that I have made an appointment to see the new dentist but I can already tell you it will not be the same with you not being there to greet me and look after me. Thank you for always taking such good care of my teeth.

Kindest regards from

Dear Alan,

I was sorry to hear that you haven’t been well and hope you are making good progress in your recovery. Thank you for your excellent service over the past 20 plus years

Kindest regards

Dear Dr Carlton,

I have recently received a copy of your letter to your patients regarding your sudden and unbelievable stroke.

I must say how concerned I was regarding your health, but am led to believe that your recovery is progressing well.

Yours faithfully

I don’t want to say things like, “I have to thank these people.” Because it’s just not true. I don’t have to do anything. I don’t have to thank these people. I want to thank these people.  I consider myself incredibly lucky to have this opportunity. If things had of gone another way I would not be capable of thanking anybody.

 

I really am incredible grateful for what the people have done. Every one of them has made an effort. They have done things which they didn’t have to do. They have looked for a card, bought a stamp and they have written in the card. Sometimes they made the card themselves. They have put some words in the card which express their real feelings. And when I read the words feelings arise within me. Long buried feelings come to the surface.  Probable different feelings from what the person sending the card was experiencing but that is okay.

When I read the card I am normally transported back in time to the last time I saw the person. And being a dilettante writer I am amazed at the power of words. Both the power of sending them and the power of receiving them. Words unlock ones soul. And the person reading the words may see something different and then imagine something they have not previously imagined.

   

What else can I say? I am using words to say that how words are incredibly powerful. Not these words of course. These words are a partially constructed edifice hopefully on the way to a building of value. These words are the random thoughts of a brain damaged retired dentist.   

Chapter 27 : Waiting for results

 She asked me, “Why are you having a cup of tea?”

I tell her that I am trying to follow the instructions. The instructions on what to eat prior to an MRI appointment. I am really trying to co-operate with them completely. To do everything they ask for. I have read the sheets many times. It says no coffee. As well as no sugar, chocolate or energy drinks. I think I can do what they want. It is actually what I want. I want this MRI done. I want the result. I want the truth.  They are helping me. I must help them as much as possible.

It is a cold morning. I am shivering. Do I need more clothes?  Will the MRI be warm? It has to be warm. It’s in a hospital.  I arrive at medical imaging and I think it t feels warm. I go to reception and ask a nurse, “Do I leave my jacket on?”

After a bit of talking she looks at me with pity and explains to me, “You don’t seem to understand. You go to a room that I will show you, and you take off all your clothes and put on scrubs. Have you had a cannula before?”

Of course. Everybody has had one of them.  We talk a while and it works well. I now know what is happening.  I have complete faith in them. I finish up lying on my back on a hospital trolley with a cannula in my left arm. And then I am pushed into a tunnel.  I am wearing ear muffs. I look forward into a mirror directly ahead of me and can see staff moving around. They are all fiddling with dials and looking at things with intent faces that say, “Just checking; making sure; having a good look.”

And then the noise starts. It is an electronic, hammering, pulsating noise. It appears to encircle me. It is ahead of, behind me and besides me. I watch the staff and they continue to fuss about the machine. They seem oblivious to the noise. They do not panic or rush. They seem calm and in control.   Which reassures and comforts me. And then the noise stops and suddenly is replaced by music. I know the song. I must remember this. It is “I heard it through the grapevine.”  And then the noise returns and overwhelms the music. And then again the noise from the machine drops and again is replaced by music. This is the way it is going to go. Music and noise alternating. I can handle this. I must try and keep still. That’s my job. I spend all my time watching the staff fuss about their machine, taking occasionally looks at a screen.

I want good test results and I have a plan in order to achieve this. I will turn up on time. I will be polite. I will speak nicely to the staff. I will do everything they ask me. With enthusiasm. I will then thank them for their help. I will repeatedly thank them for everything they have done.  That should do it. If I behave nicely I will get good results. Unlike the guy following me who will turn up late, smell bad and be rude to the staff. He will get bad test results. I know it.

  

I have another plan for getting good results. That both the lumbar puncture and the MRI will show something good. I don’t know why but I know I will be told something good.  I will get good results. I know it will happen. I imagine the results as being good therefore good results will follow. The results will be what I dream them to be.  It may sound strange but I really believe in the power of dreaming about the future. Your dreams (can call it prayers) can change what will happen in the future.

 

Is this what all people do? Do all people automatically assume they will get good or bad results? Does everybody think about the future and assume certain things? Are there people out there who automatically assume the worst? That they will get bad results.  Does it vary from person to person and how do you change?

While we are talking about results the other thing we need to mention is premonitions.  You always have some premonition of what you are going to get. It can be at any time but most premonitions come when you go back to get the results. You can normally tell by the attitude of the staff what is coming. Serious, hushed tones mean prepare yourself. A glum doctor who invites you into his little room for a talk is to be avoided.

I have spoken at length to a health care worker and they have told me that how I feel has no relationship to the results actually received. They say that basically once the test tube has left my vicinity I can’t influence the results.  They don’t believe in magic.  They don’t believe attitude or thoughts affecting results.

Post script.

This is written the day after.  I have heard indirectly form the hospital. Interim results say umbar puncture shows tau proteins to be normal and the MRI shows no additional bleeds. The news is unofficial but very promising and if correct it means the best possible results are out there and heading towards me.

Chapter 26 : Love forty

Saturday afternoon. It means I have an agreement with myself to go to the secret, clay tennis courts hidden amongst the local houses. I know about them but they could easily be missed.  By people who haven’t heard about the tennis balls in the suburbs of Hobart. A skewed tennis ball lands in a back yard and all the tennis players look through the wire fence at it wistfully.  One day it may be chucked back. Who knows? The neighbors are invisible and the fate of the ball is mysterious. Everybody notes the person who hit the ball over the fence and then moves on. A replacement ball is found.

I approach the courts warily, unsure of who will be there.  I will play tennis with whoever. From the road I look down on the courts and notice that people are there. And a dog. Which is good news. It means a certain dog owner is there. He is a pleasure to play with. The owner, not the dog. Who else is there? Somebody has been playing.  A few balls lie randomly neglected. A few foot marks and scattered ball bounce marks tell me the courts have been used. I push open the gate and walk across the clay courts to the club house. Who is going to be inside? Who is waiting for a hit? The dog jumps on me.

Inside the clubhouse I see a couple of men lounging on chairs. I greet them and we now have the magic number. Which is four. Let’s start. We head to the courts with one more question. Who is playing with and against whom?  Some people are good at deciding this and I let these people decide the teams. I don’t really care who I am playing with or against. Since my hospital trip I am only interested in one thing. Which is: How am I playing?  I skip and mime some pretend backhands and forehands. I bounce the ball and watch the ball intently. I try and hit it repeatedly. To get a rhythm going. It satisfies me and I can see the guy on the other side watching me and waiting for the ball. I hit the ball over the net and watch it bounce towards him. It is a good predictable bounce and he returns the ball to me. I return the ball to him and we have begun. We are now practicing together. But I am only interested in myself. In how my feet are moving. In my swing. In timing the ball. I am interested in myself and yet I cannot do it by myself. I can’t do anything without someone else.

I watch my feet. They are not moving well enough. I practice moving them and then think about them as the ball arrives. I move my feet before hitting the ball. That felt good. Much better. I always play tennis with my feet. I constantly think about my feet. Since my hospital trip they are slow and lethargic.  The twinkle has gone. My light dancing feet have been replaced by feet that must be told everything. They must be told to move, to run, to shuffle. I must tell them. They have lost their ability to think instinctively for themselves. Their independence. They are now completely dependent on me. And they are not as fast as they used to be. They are slower. They are obtuse. I have to think about everything and thinking slows me down.

 

One person holds his racquet and yells out two letters which sound very similar. He then spins his racquet and after it lands on the ground he peers at it and says, “You’re serving.”

Once the match starts I listen to myself saying things like:

“I thought it was going out. It dropped in.”

“The sun got in my eyes.”

“That was a funny bounce. The ball hit the tape.”

These comments are said out loud for my partner. So that he knows that I really want to win. It sounds like everytime I lose the point I have an excuse.  But the reality is I am more interested in the way I am playing or moving. When I win the point I normally say nothing. I swing the racquet, pick up balls and walk getting ready for the next point.

One time the ball hits the top of the net, rolls along the net and then ultimately drops on our side winning them the point. We are defeated by randomness not defeated by their good play or our bad play. All we can do is laugh. There was a moment when the ball was running along the top of the net and time seemed to slow as the ball decided on which side to drop.  The ball appeared to be teasing us and then having a good laugh.

There is another moment when the ball lobs over my head on the backhand side. I can get it. I shuffle backwards and to the left. As I move the ball floats further away. My mind is telling me to move quicker. My mind is telling me that this is easy. I give up. I let the ball go and laugh. Last year I could have got the ball and swatted it nonchalantly to where no-one was. This year I can’t get the ball back.

This gives me two things to think about. One is that I am getting older. I am not as quick as I used to be. My reflexes are slower. I used to be able to…. Nobody cares about what I used to be able to do.

The other thing is my recent trip to hospital. It has slowed me down. Taken away my confidence. Taken away my instinct. Caused me to think about everything and to always imagine the worst.  To imagine falling over and hitting my head. To imagine not being able to remember this game. For it to be erased from my memory.  As well as slowing me down, my trip to hospital has given me an excuse. The excuse is one that I do not like to use. In public I want to be treated like anybody else. Not given special treatment. In public I don’t want pity.  In private I think about the difference between what I used to do and what I do now.

Tennis has helped me considerably.  It has helped me with my self-awareness. Help tell me where I am. Initially when I made the jump from hospital I thought I was better. Well I was better. I was now good enough to go home. I thought that being good enough to go home is the same thing as being completely fit. And then I stepped onto a tennis court and I instantly knew the truth.  That I couldn’t do what I used to do. I couldn’t skip. My feet were slower. My reactions were slower. My body was slower.  I would never be as good or as young as I used to be.  Tennis told me the truth[i].

And the second thing tennis did was help me recover. I try and achieve my goals (which I have just made up). I try and improve my footwork. I try and improve my speed and concentration. My volleys need work. And it works. It has helped me recover. In my mind I can keep a record of my backhands down the line. I can see that they have improved and it wins me the occasional point. I can aim for perfection. I can aim to get better and better. I can aim for hitting exactly what I want everytime I want. Irrespective of what comes towards me and irrespective of my opponent.

As in the tradition of TV shows I am going to finish with a short message. A bit of preaching.

I am not saying that everybody should play tennis.  If pressed I might say that everybody needs to be honest with themselves. To honestly assess what they can and cannot do. They also need something to aim for. Which we can call a goal.

I could also say “That everybody needs to keep fit and healthy. That everybody needs a social outlet a way of meeting other people. And that tennis does this.”

If pressed I might , in a moment of weakness, say that when playing tennis concentrate on how you are playing, not why you are playing, not anybody else on the court and definitely not the score.  It is the way that you are playing that matters. How your feet are moving; your timing; your vision; your reactions. The best way to win at tennis is not to try and win. Don’t make winning your goal. Make playing well your goal. Aim to play as well as possible. To time the ball. To hit good shots. Forget about the score. Go for your shots. Try your best. And you might even win.

---

[i] Know the truth and it will set you free.

Chapter 25 : Quinces and shopping trolleys

The Derwent laps up the hills of Hobart. Effortlessly turning every piece of lowland into a flooded river bed. The Derwent doesn’t run swiftly. It flows downwards and seawards. It is useless. Nobody drinks it. Nobody washes in it. Nobody goes to work on it. It isn’t beautiful. People sail on it. A few people row on it. It could be said to aid recreation. Occasionally. And Regatta Day attempts to make this river the heart and soul of this city. The River Derwent is the thing that defines our city. It is Hobart.

I’ve been told many things about various things. What about the last post? What has been said to me?

Well I’ve been told, “It’s a good look inside your head. Can see what you’re been thinking.”

Is this the only way I can communicate with people. By writing down my thoughts. Can’t I just speak to them? Go to a pub, have a beer and talk to them.  Or is writing down your thoughts a better less confusing way of communicating.

I’ve also been told, “Best post yet. If you go back to some of your original posts then there is a level of insightfulness.”

This comment is a compliment of one post by comparing it to other posts which were not good. Or another way of saying it is, “the other ones were bad and this one is not as bad.”

I suppose it is normal to compare posts by the same person. To rate them.  All sounds perfectly normal. Best to accept it

.

In my back garden the quinces are ripe. They have softly gone from a green to yellow. They are all lumpy, unevenly shaped and contain coddling moths. And people want them. You can give them away. I know how difficult it is too chop them up. They are hard. They are one fruit that must be cooked. Before they can be cooked they must be prepared. This means cutting them up, removing the pips, removing the coddling moth and any remnants of it.  You could say that this is hard work. You could say that quince jelly is tasty. You could say quince jelly is something you can show of with pride. A local aficionado will know how much effort or love you have put into each jar. If somebody is uninterested or blasé about your scones with quince jelly you will know that they have never prepared and cooked quinces. Their dispassionate lack of interest in your jelly will tell everybody that they have never cooked with quinces.

One of my daughters says about my latest post, “It’s not offensive, I found it interesting.”

These comments leave me unsatisfied so I ask her more questions. She backs away and says,” Why are you so interested in what I think?”

I continue my questioning and she retreats signifying that I am taking it too seriously. I want to grab her and shake her until she realizes that I am taking it seriously because I have faced my own mortality. I’ve been to God’s waiting room and was told, “Come back later. We don’t have anybody booked by your name.  We are expecting a guy called ....”

When we arrived in Hobart we thought we were escaping the travails of a big city. The traffic jams, the parking centers, the traffic lights. Not now.  The traffic has followed us here.  The car parks have infiltrated the city. They are breeding and threaten to take over the city. Nowadays the car parks always seem to be full of people and cars behaving badly. For some reason a person in a car seems to think they can behave any way they like. They can’t be seen. In their car they are invisible. They remind me of supermarkets and shopping trolleys. Give some-one a shopping trolley and their behavior will change. Why is that? Who knows?  Perhaps the driver of the trolley thinks other people will look at the trolley not the person steering it.

Chapter 24 : How are you?

"You look better than when I saw you last time. Last time I saw you, you had just got out of hospital."

I immediately think, “Don’t say such things. Don’t remind me of hospital. Why do you do it? Why do you see me and immediately remember certain moments. Bad moments.”

Next person I see says, “Hello, are you getting better?”

Once again what can I say? I could ask them something. Change the subject.

Next acquaintance approaches me and says, “You look alright.”

What can I say? I could say, “I’d rather talk about something else. I don't want to talk about how I am."

As usual Jack gets it right. I visit him and Christine.  We talk normally about the things around us.  The sheep, the climate, the weather and his property. After about an hour he says, “You are physically looking just as good as normal. How do you feel?”

That’s a good question. He hasn’t been overwhelmed by my illness. He has treated me the way he would have normally. And he hasn’t ignored my illness because he can’t handle it. He has faced up to it honesty, openly and logically.

I answer him openly by saying, “A lot depends on my test results. I am having a couple of tests.  The results should tell me if I am getting better. They should tell me what caused my illness. They will open my world.”

I then add the postscript, “I feel really good.”

This is basically true except I am sick of the numbness. I wish it would go away. My teeth and lips feel numb. Not a problem unless you eat.  Then it can become a big problem, especially if the food is hot. People don’t want to hear about that. You can’t complain about your teeth everytime you eat.

How am I going in general? I am reminded about the comments of one doctor who spoke to my daughter and described me as the miracle man. Apparently my recovery was miraculous. I was the man who came back from the dead. The ambulance man has also described me in similar ways. He didn’t expect me to survive. Of course, he didn’t tell me. I heard it about third hand. It actually makes me feel good to hear that people didn’t expect me to survive. Except they won’t go and tell me what they were thinking.

I enter the front room when my wife is talking on skype. I immediately hear, “You are getting better.”

Somebody is watching me from the UK. Once again I don’t know what to say. I don’t want to talk about my health. I am very happy to talk. Honesty and openly. I could tell her all the good things arising subsequent to my illness.

The first would be all the things I have got out of doing. Numerous times I have said I am not doing that because it puts my health at risk. This may or may not be true but it is something that people cannot argue with. I always win.

The other would be the way it has changed my view on life.  Depends on who you speak to. But some people have said that I am more tolerant, more relaxed and happier. I definitely feel very un-inclined to complain about the standard of service. I prefer to accept it and thank them for doing their best. For trying. Most of the time I don’t feel like it is my responsibility to get everything working properly. I just feel grateful. That’s all.

The other thing that I am grateful for is my knowledge of preventive medicine. My knowledge of nutrition, physical exercise and how to live has improved. Hopefully in very small ways interacting with the people around me I can impart some of this knowledge. Hopefully some of my improved knowledge of nutrition will osmotically seep into some of the people I meet. And then maybe they will benefit.

What else can I say? I don’t know. Hopefully someone will comment and trigger a response from me or a comment from someone else.

Chapter 23 : Results of MRI tests

           Need to look at my results from my MRI tests.

MRI Results says possibly cavernomas or amyloid angiopathy.  This suggests both are equally likely. That there is a 50/50 chance of either occurring. This is a big mistake. It is much more likely that if you have two possibilities one is more likely than the other. What I need to know is the possibility I have CAA.

Being an uninformed and uneducated lay person I have gone to my friend Dr Google to try and help me. I have found the following. These are some possible guidelines for diagnosis of CAA associated with intracranial haemorrhage.

If the patient is older than 60 years and clinical and MRI data reveal a single lobar, cortical, or corticosubcortical hemorrhage without another cause; multiple hemorrhages with a possible, but not definite, cause; or some hemorrhage in an atypical location.

MRI may show evidence of multiple large and small, petechial cortical and subcortical hemorrhages, even in patients without a history of previous hemorrhage.

Punctate (usually < 5mm), round hypointensities, termed microbleeds, are frequently identified in white matter. Although these cerebral microhemorrhages are often present in amyloid angiopathy, they are not diagnostic of amyloid pathologically. Any conclusions regarding the significance of cerebral microbleeds must be interpreted given the individual patient or population being evaluated.

Microbleeds may be associated with hemorrhagic transformation of ischemic stroke. Microbleeds may be more common in patients with hypertension, but no characteristic pattern occurs in the distribution of microbleeds. Microbleeds may suggest a hemorrhage-prone angiopathy involving brain parenchyma distant from identified microbleeds.

MRI sequences show evidence of hemosiderin deposition that corresponds to old hemorrhages. In patients who present with lobar hemorrhages, evidence of old petechial bleeds can help in the diagnosis of cerebral amyloid angiopathy (CAA). Not an issue in my case. No old hemorrhages with hemosiderin formation.

How do these guidelines compare with my MRI results which are as follows?

Hyperdensity within right and left frontotemporal lobe.

Haemorrhage within right frontotemporal lobe.

Haemorrhage in left temporal lobe. May be subarachnoid or parenchymal.  Could be left superior frontal lobe as site of haemorrhage.

Multiple intracranial hemorrhages.

Looking at my results all the evidence suggests multiple intracranial hemorrhages of unknown aetioliolgy. All the evidence (including Dr Google) suggest that the best way to aid diagnosis is to have another MRI when better. I am now free of symptoms and booked for a new MRI in a few weeks. Can’t wait. 

Chapter 22: Looking at my test results

According to the neurologist there are two possibilities.

Number I: I fell, hit my head (involving damage to several blood vessels) and suffered an acute traumatic brain injury.

Number 2: Cerebral Amyloid Angiopathy (CAA) had weakened some cerebral blood vessels causing several blood vessels to haemorrhage, causing a seizure, causing me to fall and hit my head. 

It is quite clear.  Head injury leads to an increase in total tau levels.  Many studies have shown this increase in Total Tau.  Tau levels increase early after trauma, peak in the second week and decrease slowly afterwards.  Tau levels in CSF is heading down about 40 days post trauma. The increase in Total Tau probably reflects axonal damage.  The Total Tau level is a marker for neural degeneration.

In one study the average CSF Total Tau level was >2,126 pg/mL on days 2 to 3 after trauma. The normal Total Tau level is less than 358 pg/ml.

Total Tau level also increases after an acute stroke with no external trauma.  In one study CFS Total Tau increased on day 2/3 to 179%, Day 7-9 to 257% and after three weeks 425% with return to normal 3/5 months later.

My Personal  Results:  CSF taken on 27/10 which is approximately three weeks post-accident  showed a total Tau level of >2279 which is an increase of about 634% above normal.  There is definitely proof of neural damage.  The damage may have come from the trauma of hitting my head either before or after a seizure. From CSF results there is no proof of anything except there was trauma involving my head.

The difference between the two original possibilities is CAA.  CAA is either present or not. That is what I need to find out. 

What is CAA? Cerebral Amyloid Angiopathy (CAA) is an angiopathy in which amyloid deposits form in the walls of blood vessels on the central nervous system. These deposits weaken the walls leading to breakage of the walls of the blood vessels. This manifests as a haemorrhagic stroke.

There is little information on levels of p-tau in CAA.  It is more likely to be increased but there is little evidence that says a certain level of p-tau means CAA. P-tau is a marker for the formation of neurofibrillary tangles.

My Personal Results:  I had a very low level of P-tau.  Suggests a low level of hyperphosphorylation of tau.

Levels of both Aβ40 and Aβ42 were lower in the CSF of CAA patients. These levels  probably relate to Aβ metabolism and the deposition of plaques containing Aβ40 and Aβ42 in the walls of the blood vessels.  A low level would probably indicate CAA as being more likely.

My Personal Results:  My results suggest a pretty normal level of Aβ40 and Aβ42 in the CSF. This suggests nothing except the need for further tests.

The final results of my investigations show a need for further tests. Within the next few weeks I will have a MRI taken of my brain. I will have a lumber puncture to obtain some CSF. I can’t wait for the tests and, even more importantly, I can’t wait for the results. 

Chapter 21 : Tau Proteins

On this journey that I have been on I have kept coming across Tau proteins.  I have no alternative. I have to tell people a small part of what I have learnt about Tau proteins.

How many Tau proteins do you have? What are they? Tau is used to describe a group of proteins that exist in the cerebra-spinal fluid that primarily stabilize microtubules.  They are present in the liquid (the CSF) containing the nerves. They are not present in other fluids such as blood. When they are defective and don’t work properly it is commonly a sign that the person has Alzheimer’s Disease (AD) or Parkinson’s Disease.

One of the main functions of TAU proteins is to modulate the stability of axonal microtubules. In a healthy CNS the transport system is arranged in parallel rows. Food and waste travel along these rows or tracks. Tau proteins bind to microtubules to help keep the tracks straight.  Excessive or abnormal phosphorylation of tau results in the transformation of normal adult tau into PHF-tau (paired helical filament-Tau) and NFTs (neurofibrillary tangles) which don’t work as well. Phosphorylation of tau proteins means your brain doesn’t work as well. What causes phosphorylation of tau proteins? Kinases play a role. What are kinases and do you control them? That is a big question which I will look into.

Traumatic Brain Injury

High levels of tau in the CNS leads to poor recovery after head injury.  And head injury leads to high levels of tau in the CSF. Or head injuries can lead to a poor recovery from head injury. Repetitive mild trauma such as in boxing can lead to NFTs which can slow recovery from brain trauma.

When is a test for Tau proteins taken?

One time is Alzheimer Disease.  It is a supplemental test used to aid in diagnose. Typically done after a series of other tests where the practitioner first tests the function of the brain. In a symptomatic person a low Aβ 42 level along with a high tau level reflects an increased likelihood of AD. It may also indicate a rapid progression of the disease.

In Alzheimer’s disease (AD), total CSF beta amyloid (Aβ) is not significantly different from controls but Aβ42 is decreased probably because it is deposited in plaques and is not available in a diffusible form. Total-tau (t-tau) and phosphorylated tau (p-tau) are both increased in AD due to neural death and the release of tau into the extracellular space.

Another time a tau test is done is when trauma results in excess fluid in the ear or nose and it is not known where the fluid comes from.  A physical injury to the head will cause membranes covering the brain to break and CSF to leak out. A test to determine if the fluid is CSF is needed.  Time for a Tau test. 

Chapter 20: A customer of the Health System

In the past few weeks I have been a customer of the Health System.  This is the way things have gone.

Every disease varies from person to person and within the same person from time to time. The disease will constantly alters its appearance. It will not always appear typical or classic.  It will not always appear as described in the text books.

Management also depends on another person who is continuously changing and evolving: the clinician.  Clinicians all vary. They are not machines and some days they are feeling better than other days. Their emotional and physical state depends on both home and work, What happens at home and at work affects their work. In other words the work they do will affect their other work.Their knowledge about a particular topic varies for a multitude of reasons and may influence management.

The quality of your care depends on more than just you and the clinician. It depends on other people. Many times I have sat silently as the clinician has attempted to understand x-ray reports or lab results. The clinician has never told me what a good job these other people are doing.  He has never looked at the lab results and said, “We should be very grateful for these people. They are doing a great job and have come up with great results which make our job easier.”  They never say such things.  They always look at the results warily with a look of trepidation and fear. They are always suspicious. From this we can conclude one thing. Good care depends on a team working together. Another thing we can say is that good care depends on equipment that is understood and that works.

One of my favorite days was the day I had ultrasound on my arm. We argued and fought with people and their cars in order to get a suitable parking spot. We finally parked the car and sat in the waiting area downcast and wondering about a lot of things.  I was called for my scan which was done incredibly efficiently and effectively. I sat there overwhelmed by the quality of the machine and the pictures of my arm. I sat there thinking how far the medical system had come.  I was stunned. After the scan we exited the building in order to recommence our battles with the underwhelming parking system.

Sometimes my care has been diverted. It has lost sight of the ball game. Sometimes because of me. Sometimes the clinician. Sometimes for obscure nebulous reasons. At the moment the main issue is what happened on the 7/10/15. It is now five months later. Why did I collapse? Why did I become unconscious for two weeks? How do I prevent this happening again? According to the neurologist there are two possibilities.

Number I: I fell, hit my head (involving damage to several blood vessels) and suffered an acute traumatic brain injury.

Number 2: Cerebral Amyloid Angiopathy had weakened some cerebral blood vessels causing several blood vessels to haemorrhage causing me to fall. 

He doesn’t mention the third possibility which is the most likely.

Number 3:  Both Number 1 and 2 combined and occurring together.

I may have completely misquoted him for which I apologize. It is now five months since the beginning of my illness and he has ordered some MRI’s and lumbar punctures to try and diagnose the cause of my illness.

The last 5 months has taught me one thing (actually it is more than one thing). It is up to me to manage myself. This means I work with the professional staff where possible and where necessary. It is a collaborative effort involving a multitude of people but I am the one who needs to know everything.

My next task is to look over my lumbar puncture test results and see what I can deduce.  I have finally obtained copies of my test results (it was a long story). The main tests are for levels of TAU in my CSF.

I will go into more detail about TAU proteins in my next posts.  They are very interesting.

Chapter 19 : Why a blog?

Since starting this blog I have been lucky that many people have been inspired to tell me certain things.  These people have been various and disparate but their comments have often been very similar. To answer these comments there are two things I need to do. Tell people why I started the blog and what the aim of the blog is.

I initially started the blog because I found myself going through something which overwhelmed and confused me. At the age of 59 I knew nothing about having an acquired brain injury and spending 7 weeks in hospital. You could say I was lucky not knowing about such things.  I was able to find something out about having a brain injury by writing about it. By putting down my thoughts.  I was more able to see the main themes or ideas. The blog made my life easier. It helped me make sense of my life. It helped me but I can imagine people that it would not help. Everybody is different. Other people would be helped in different ways.

I did not have an acquired brain injury or go through all of this in order to have something to write about. I would much prefer a happy, boring life with nothing to write about than my life of the last six months.

I then found that there were other benefits of the blog. Not necessarily for me. More for other people.

One benefit was for staff and patients of Tasmanian Health Service or any similar Health Service. In both cases they (the staff and the patients) would hopefully get a vague idea of what the other side was thinking. Hopefully they would realize that staff and patients are not on opposing sides. They are not enemies. They are actually on the same side and ultimately they have the same desired outcome.

 A nurse or carer would hopefully think about the patients she/he is managing. She would think about things differently or from a different point of view. Hopefully her management improves.

From the patient’s point of view they can see what someone else has gone through. They may read about someone else who had it worse than them or not as bad as them.  It doesn’t matter. What matters is that they will not feel so isolated or lonely. They would feel something in common with someone else. They would have empathy for someone else and imagine people thinking of them. Hopefully their relationship with the staff improves. Their relationship with the staff depends on the staff and them. It depends on both of them. Hopefully the patient will realize this.

Other people have read the blog. Some of these people are not staff or patients. Some are acquaintances of mine. Some are people I have met for a variety of reasons. Hopefully the blog will explain a bit about my life in the last few months. Also I am hoping that when these people meet someone who has been sick (a neighbor or relative) they think about the way to act. They think about what to do.

The final group of people that has read the blog is people I have never met. I hope these people have got something positive out of the blog and that one day, when I least expect it, I may get something positive from them.

Chapter 18 And now...

If you have a stroke in Hobart this is the path you may travel.

Start at the emergency department of Royal Hobart Hospital.

Transfer to ICU. You won’t remember this. Doesn’t mean it didn’t happen or that the staff weren’t aware of you or discussing you.

Transfer to the stroke unit. Lying in bed you realize the word stroke is not a good word to use. Visions of someone lovingly stroking their cat. And there are two completely different types of stroke. One involves thrombosis. One involves bleeding. They have different causes and need different treatment.  The similarity is that they can both occur in the same area. More accurate to say Acquired Brain Injury.

Transfer to the Rehabilitation Ward.  This ward will contain a variety of patients with a variety of problems.  You are more likely to be sharing a room with someone else. You will have no say in how many people in your room, who they are and who their visitors are. And another way to look at it is  "they will have no say about anything you do".

You then get discharged and are treated by the Rehabilitation section of Tasmanian Health Service as an out-patient. You will be given random appointments to see various people such as an occupational therapist, speech therapist or physiotherapist. You will hear phrases such as “Set yourself goals.” “You are improving.” “You are getting better.” “These are your new goals.” “This is what you will achieve for the next visit.” “I want you to do this for me.” You will then turn up very dutifully to all your appointments to meet these staff and you will notice one thing. All these people (as well as the nurses) are incredible nice, polite, well-mannered and caring. And you can’t help but like them and you begin to wonder why you like these people so much.

Is it because they are only interested in talking about one thing? That thing would be me. I love that topic of conversation.  Or is it because, for some strange reason, they really care about me? Or is it because I am really happy to be alive, happy to see them and they are happy to see someone who is happy.  Is it because they are all good staff who enjoy their work, work in a good environment and are happy to work with anybody and everybody. Or is it because I just imagined everything. Is it true that I became completely dependent on these people and therefore I imagine them as being better than what they actually were? If this is true then there must a name for the syndrome that I acquired.

Irrespective of how good these people are I have realized that I need to do without them. I have realized I need to take charge. Not rely on these people. I need to manage my own life.  Not let someone else manage it for me. If I decide that I need someone else’s help then that is the right time for me to ask for help.

I can look at my life under the following headings.

What caused the accident?

How do I prevent it happening again?

Personal Health. What exercise do I need to do in order to keep in optimum condition? To prevent medical problems in the future? And when can I play tennis again?

Hobbies and activities.  What things do I need to do which will enrich my life? What things will give me satisfaction? Add joy to my life. My favorite activities are writing and gardening. Things may change in the future.

Relationships with all the people I meet. I want optimum or ideal relationships with all the people I meet. Some people are more important because I see them more often. Such as children and wife.

Basically I need to look at my new body and see how it best works physically, mentally and emotionally.

Chapter 17 : After sickness?

People always put me in with other people that they know how to handle, the chemo group. They know what happens to that group. It contains people who will feel sick, vomit, have a lump or an ulcer or other pathology which gets smaller. It contains people who have been given a diagnosis and a timeline.  I don’t know why I am in this group. I don’t have a timeline of three months or six months or twelve months. There is no swelling or lump I can put my finger on. I have been told nothing. I haven’t been given a diagnosis or a prognosis. No diagnosis. No timeline.

At the end of this month I am due to see the Neurologists. They need to tell me what is happening. I need to ask them. I keep on saying this and my daughters keep saying, “Well what happens if they don’t know, if they can’t tell you what happened, what do you do then? What happens if they don’t know what is going to happen in the future?”

At present I am feeling faint all of the time. My pulse is slow. I feel better when I exercise.  When I go for a run or a walk. But I cannot tire myself out by going for hours. No long activities as in the past. Need more frequent activities but easier not vigorous sweating competitive activities.  My body has changed. In several ways.  I need more rest.  I wake up slowly in the morning. I wake up more in the afternoon. My bowels have changed. Different bowel movements. No details will be provided.

My eating habits have changed. I tend to eat less. Become less hungry. I don’t eat just in order to make the host feel better.  If I don’t feel hungry and the food looks less than appetizing I don’t eat it. I don’t eat it just in order to make people talk and socialize more. 

My old work day routine has gone. It consisted of get up 6:30 a.m. Have breakfast of porridge. Walk to work. Snack on biscuits. Work till 1:00 p.m. Have lunch consisting of toast and tea. Sleep for twenty minutes as I listened to the midday show. Go back to work. Have a cup of coffee. Walk or run home. Have tea and then watch TV until going to bed. 

Chapter 16 : Are you normal?

Anne is inspired by the works of art (at MONA) to talk about the last time she saw me. Which is when I was comatose in hospital.  Which I do not remember. 

Anne: You were sick. You didn’t say anything.

ME: I don’t remember that.

Anne: Now look at yourself. You’re normal.

Me: So I wasn’t normal then.

Anne: You couldn’t speak. Didn’t respond to me. Just ate pureed food.

Me: I was abnormal

Anne: Yes.

Me (being stupid): Is this art normal. Are the people creating it normal? Am I normal now?

No response.

ME: I’m asking am I normal now?

She still doesn’t answer. She is busy looking at a 3 thousand year old mummy.

Chapter 15 : How do you treat a sick person?

Anne (my sister) and Dennis (her husband) visit me. First day I do what people in Hobart always do. I took them to MONA. MONA is full of beautiful people from interstate.  I have spoken to many people who told me they work at MONA. None of them are visible.  No friendly faces amongst the staff. 

We wander amongst the beautiful buildings full of big ideas about death and life. My little thoughts are insignificant relative to all the big thoughts from big important artists.  We are surrounded by high fluting big ideas. My brain is spinning with all the big ideas. Overwhelmed.

MONA inspires us to talk about big things in a serious fashion. I have just come out of hospital which is full of sick people. That’s serious. What is that like?  How do you behave with sick people?  We approach this topic and skirt around it but eventually Anne asks a big question.

Anne: What is your reaction to somebody who is sick? To somebody who has Stage 4 cancer undergoing chemotherapy. How do you treat them?

ME: I would do the obvious thing.

Anne: What’s that?

ME: I would speak to the partner. They are always ignored. They have to do a lot of extra work. They always get ignored. They have uncertainty to live with. They get blamed for everything, ignored.  All cards, letters, presents, visitors visit the sick one. Nothing for the carer.

Anne; What can you do about that?

ME: I would make a point of speaking to the carer. Ask them, “How you going?”

ME: I would ask them about their unique life. Ask them what they are doing, what they are interested in. what their aims are? You have to treat them as a unique individuals not as an appendage to the sick person. Not as half a sick person. I also don’t have to state the obvious which is don’t ignore the sick person.  You need to be able to speak to two people at once. Not one at the expense of the other. 

Chapter 14 : Wearing a nappy

Back from Gold Coast I talk with Lorna about the blog. She doesn’t like it.  She says it is only from my point of view and leaves a lot out.  This is the way our conversation went.

Lorna: Do you want me to tell everybody how you wore a nappy? What you did when you were comtosed.  Do you really want me to tell people what you did in the first two weeks? How you took off all your clothes, put on my sunglasses and urinated in the closet on top of clothes.  Do you really want people to know that? That’s the trouble with your blog. It leaves so much out. It’s wrong it’s only written from your point of view.

Alan: That’s what I want to know. Tell me more of what happened. It doesn’t upset me.

Lorna: I can but you will not like it.

Alan: I want the truth.  That’s really what I want to know.

Lorna: Do you want me to say how you argued about everything?

Lorna: Do you want me to say how you lay on your back and were fed through a tube?

Lorna: Do you want me to say how you had a nappy and how you used to poo everywhere? It was disgusting.  Do you want me to mention that?

Lorna: What I am saying is the truth. What you are writing is not the whole truth.

Alan: I want the truth.

Lorna: The doctors came and visited you all the time. When you were unconscious they were always talking about you, always worried about you.

Lorna: They used to come and say, “I suppose he’s in the gym. Can’t talk to him there. And they would go and have a look at you going flat out on the bicycle and then walk away. That’s why you don’t remember talking to them. But they were there.”

Ac: I want the truth.

Lorna: Do you really want the truth?

AC: Yes of course that’s exactly what I want.

Our conversation sort of fizzled out at this point. 

Chapter 13 : The Gold Coast (part 3)

In the afternoon I have a hit of tennis with Bradley. I feel old. Past it. Can’t move my feet. I try and focus. Try and concentrate. I trip and fall. My left hand goes out to break my fall and protect me. My left wrist becomes very sore. What happened?

I can’t handle it. This injury as well as my other problems is too much to handle.  I cannot cope with this injury. My wrist is strained.  It is too much for me. It dominates my being. I suddenly realize a fit healthy person copes much better with a strained wrist than a sick invalid. It really matters.  One illness makes it much harder to cope with or get over a second illness. I have learnt something. 

The next day I try some stretches. Left wrist is sore. Try and move it this way. That makes it worse. Try and stretch it. Still sore. Every time I move or rub it, it is sore. Is it time to retire? Is it time to leave tennis to the younger people? I know I can get back into it. Time the ball again. Move my feet. Do I want to get better at tennis? Is it worth it? Do I want to improve my footwork? Is it time for me to retire. I wouldn’t be the first person to quit. Is it time for me to start acting my age. It’s depressing. The moment I decide or somebody tells me it will be depressing.

Leaving the Gold Coast I think. What do I need to do when I get back to Hobart? Perhaps a few plans will help. I somehow need to get my life back.