Eddie Chilvers

The day before my "episode" Monday 31st January 2005 began as any other day. I had done a "share" at the Sunday meeting at "Ordnance Road" the night before. This was considerably foreshortened by a "conscience meeting" held before I spoke. I don't remember what I talked about and it's not important anyway.

The following morning was uneventful and held no precursor to the events to follow. I got up kissed my Wife and Daughter (then aged 10) and drove and parked the car at the local railway station. I commuted on the train from Hedge End to Basingstoke, a journey of about 40-45 minutes. I walked the short distance from the station to my office.

At lunch time I went out and brought a Caesar Salad wrap at the local newly built Tesco Metro in Basingstoke centre. I also brought some crisps. I ate both at my desk. So far I didn't feel unwell.

At some stage during the afternoon I had to give a presentation on Inheritance Tax to a group of consultants and managers. They had all been pulled together for a meeting and some training. I began to feel tired and must have done so because I made a remark to one or two of the consultants at this stage. I put this down to just having eaten my lunch and was otherwise unalarmed.

I was a few minutes into my presentation when I suddenly felt very unwell. I didn't pass out but knew things in my head were horribly wrong. I had been unwell in the past but this was beyond anything I had experienced. I lost all control of my right hand side and was very disoriented. My colleagues sat me in a chair not knowing what else to do. I slumped. First aiders were called and the lead doctor from the team taking blood from volunteers downstairs in our Gym was summoned. An ambulance and paramedic team was also called for.

My experience was beyond the first aiders and the lead doctor from the blood unit had no personal experience of his own. I was getting indignant at being asked what I thought were stupid questions by him. At least he kept me awake.

I had guessed for myself that this may be a stroke as I had done some reading and the strong metallic taste in the right side of my mouth and other symptoms led to this conclusion. I tried to say as much to anyone prepared to listen to me and my untrained diagnosis but I guess I was suffering from Aphasia by this time and my speech was pretty garbled.

By this time (within a few minutes of the event) all I wanted to do was to lay down. With some difficulty I was placed on the floor. I was promptly sick and continued to be so until I could be sick no more. This episode must have lasted until the paramedics put me in the ambulance

After about 10-15 minutes the paramedics arrived. I continued to feel very unwell and disorientated although I could communicate in some form or another. I wasn't making a lot of sense although I was trying my best. It was clear that they had patients like me before as they asked all the right questions.

I was taken by the ambulance and paramedics to the A&E department at Basingstoke Hospital. On admission the mis-diagnosis was an ear infection which had caused the disorientation and balance issues. I was placed on a trolley for observations and grew very cold. I just wanted to sleep.

Unaware to me my Wife was called and she and my Daughter came to Basingstoke primarily to pick me up. She had also packed an overnight bag. She and my Daughter observed that I was in no condition to go home. Indeed my little girl was quite frightened by the experience. It was clear to them and me by this time that this was not an ear infection. I was put in bed.

I can recall little except I was allowed to use the bathroom. I slept for much of the time at Basingstoke. I remember my wife and her friend visiting me next day. At some stage I can recall being taken for a CT scan. This confirmed that I had a haemorrhage and would be transferred to the Wessex Neuro wing at Southampton. I was taken by ambulance from Basingstoke to Southampton.

The next several days saw me very confused but buoyant. I was sure that in a few weeks I would be back on my feet again as previous experience led me to this conclusion. What little I know and my view of Strokes has changed completely.

The results of various angio, CT, and full body scans revealed a ruptured AVM (arterio veinous malformation). I guess I have been carrying this all my life. The rupture resulted in a subarachnoid haemorrhage. I subsequently had the stroke.

After an Angiogram and MRI scan it was decided by Mr. Duffield (one of the main neurosurgeons at Southampton) that a surgical procedure and the excision of the the effected AVM area would be the best course of action. A craniotomy was carried out on 17th February 2005. To paraphrase his words "it was the deepest that I have had to deal with" "at one stage I had to decide whether to proceed or to leave alone". The surgery lasted nine and a half hours. Nonetheless the surgical procedure was successful and the excision completed. This was evidenced by a subsequent angiogram.

Physiotherapy began. To start with I spent about three months (from March to June) in Victoria House rehabilitation unit. The food was awful but it didn't kill me. I hated every minute and missed my family so much. I knew that I was unlikely to be the same Daddy again. My wife, daughter, and even our dog Barney came to see me as often as they could.

After a while I was able to bathe myself with great care and later I was allowed to walk unaided with caution around the unit. This was a great step for me and one which I remember well.

Some occupational therapy began. I was a dab hand at making quiches and cakes with a little help. Everything was a significant effort though and I was very tired after.

I was discharged from "Vicky House" in June 2005. I continued to make progress at Physiotherapy. I attended lower and upper limb function as well as general balance classes.

All through the summer following my discharge from "Vicky House", although I was making reasonable progress at Physiotherapy, I was getting sick and very tired regularly. On 26th Sept 2005 I went for a routine CT scan. Incidentally this is my wifes birthday. This showed I had Hydracephalus. This I have learned is not an uncommon complication with my type of surgery and the stroke I suffered. Duffield decided that the best solution would be the insertion of a VP shunt and that it made no sense to delay things.

On the 29th Sept 2005 I had surgery to have the VP shunt inserted. I am unsure how long the surgery took but believe this to be about two hours. I was very dizzy for many days after the surgery. After a couple of days I got back on my feet albeit gingerly with the help of the therapists. I was discharged after a week. Although the sickness was gone (a blessing) everything else seemed like I was starting over. Even the anticipated improvement in my walking failed to materialise. I grew very unhappy and the feeling of uselessness intensified something my belief system is slowly coming to terms with.

Today I attend physiotherapy, and hydrotherapy. I have enrolled with a local Gym which should take over these latter two in the near future. My neurosychology summary shows I have not lost my marbles. Occupational therapy are hoping that I will be able to go back to work and a meeting has been set up to begin this process. My company is holding my job open. This will probably be just part time for the foreseeable future. Financially I suspect this will put me out of pocket in the short term and I am quite fearful about my fatigue levels at the moment. Still these appear to be improving albeit very slowly.

I have learned some new skills in occupational therapy and although it is early days I can do some woodwork now. I have made bird boxes and letter racks so far. I have also put together a work type presentation on the taxation of life policies for UK resident's. This seemed very well received by my therapist (at least she was kind enough to stay awake).

I wish to learn to drive with my disability and the DVLA have recently written asking me to sign for a provisional disability licence so that my driving can be assessed at one of their centres. This I have done. I am waiting to hear further.

My Stroke has left me with mobility issues on my right side. Although I can get around unaided this is very slow. I have had to teach my right side to walk again. My right arm is severely affected and I naturally now type one handed left side only. I can only use my right arm to hold things. Even then I find it very difficult releasing things from my right hand. I continue to be unbalanced and uncoordinated. If there were a prize games for dribbling I would be right up there. I am tired a lot of the time. I find speaking a considerable effort and I slur my words, this is particularly so when I am tired. My head is clearing but I still have episodes where things seem very difficult.

My wife says things are improving although I feel this is very slowly. The greatest thing that I feel is my lack usefulness both to the family and wider. I am very reliant on others for tasks which would have presented little problem to me in the past. I was a keen musician before this episode and was paid well for my skills. I can no longer sing or play the bass. I miss these greatly although others may disagree (I haven't lost a good sense of humour). I miss playing golf (I had a reasonable handicap) and have yet to try out riding my Bike.

On a separate point I was pronounced diabetic the year before all this happened. We were trying unsuccessfully to control my diabetes with diet and tablets. This episode has resulted in a mixture of tablets and four daily injections. Although a pain (no pun intended) my condition is now well controlled. I also used this opportunity to pack up smoking something I was unsuccessful at the previous year. The first one does the damage as I have proved to myself. Previously I was smoking ten a day. Finally, but for completeness and to explain my first paragraph I am a grateful recovering alcoholic who hasn't needed a drink for several years. I have liver disease from these drinking days and am still on the liver transplant register although the need for a transplant is receding according to my latest tests. Apparently, the latest research out of America shows that liver cirrhosis is reversible if the insult is single in nature (the booze in my case). And this is stopped completely. I held meetings in "Vicky House" while I was recovering from my stroke. I am sure I wouldn't be here if I were still drinking.

I am very fortunate in that my job comes with permanent health insurance. This will pay 75% of my salary less any thing the Government pay to me. This pertains in the long term until I am able to return to work full time and is fully pensionable. We have still had to cut our cloth a bit as being disabled is not proving cheap. My wife is working some more hours so we can afford a family holiday this year. I don't know how those without insurance get on but contrary to popular belief the Government do little to help the disabled and certainly do not hand out money willy nilly. We have a mortgage and very modest savings.

All I all I am a very lucky stroke survivor. While I didn't wish for what has happened to me and wouldn't wish the episode or consequences on my worst enemy I do feel that this had to happen to someone. Why not me?

Thanks to Eddie for sending in his profile. Anyone else who would like to share their story can send it along with a photograph (if you're not shy!)

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