BBC Radio 4: The Life in My Head

On Monday March 2nd at 11.00am.  BBC Radio 4 
 
 "The Life in my Head: From Stroke to Brain Attack"

Robert McCrum journies into his own brain to understand more about Stroke. Robert suffered a severe Stroke in 1995 and ever since has been living with its consequences.


http://www.bbc.co.uk/programmes/b0540b3p

"Well on the way"

"Well on the way" - this was the phrase that was recently used by a friend about my recovery.
I would have to agree with this, although I do have some issues which aren't readily visible.

In July this year, it will be six years since I had my Stroke, however I still consider myself  "work in progress". I know that I have come a long way since the evening of July 9th 2009 - but there is still more to do. My right hand, fingers and arm have still not come back to full use and exercising keeps on telling them that they have a purpose.
My father died eight months after I had my stroke and each time he saw me he asked: "how's the arm, will it recover?" I made a promise to him that it would and so I keep on working.

I still wear my resting splint overnight and have just recently had another one moulded for me. This keeps my fingers straight and also comfortable. I wear my foot up splint and knee brace when I am out walking - be that around town, shopping,days out etc and I always take them on my holidays - if I didn't I wouldn't be able to do all the walking that I can achieve.
I used to get "hung up" at what people would think, but now I just go out without any second thoughts. I have covered my foot up splint with lace, but I can easily change the way it looks by using a scarf or different fabrics. It doesn't matter what people see, as they only see you for a fleeting moment, whereas I have to do what is right for me or live with the consequences.

I do not get as tired as I used to do, but can still occasionally be in bed by 8.30/9.00pm. People are very understanding if I make arrangements and then cancel at short notice.
There are times after a night out or, if we have done a lot of travelling, that I am so tired that I have to helped upstairs and undressed for bed. Also on the odd occasion when I have a bath I may have to be assisted both gtting into and out of it!
My concentration can sometimes be lacking and I can still find myself searching for the correct words. My husband and I smile at this as it reminds us of my mother who sometimes got words mixed up.    I can and do sometimes get stressed in crowds or have to meet people for the first time.
Sometimes all you see is not actually how things are - - - 
                                              -o-o-o-o-o-o-o-o-o-o-o-o-

As I have previously stated exercising for me has been one of the keys to recovery- benefits of exercise include:
Controlling cholesterol levels, fighting high blood pressure and controlling any potential weight gains. I put on over two stones post stroke and could see my dress size increasing. At this point I joined a group and have successfully lost this weight and have remained in target for thirteen months.

A stroke can leave you with no physical disability or affects your ability to move. After the physiotherapy ceased I made myself a temporary exercise plan which I tried to carry out daily - not always a possibility due to fatigue. Over time I have built up my stamina levels and aimed to walk further distances and after a break from chairobics I am about to restart classes. Even a walking stick can be used as part of an exercise plan.

The Stroke Association has produced a booklet about Exercise and Stroke:
http://www.stroke.org.uk/sites/default/files/R07%20Exercise%20and%20stroke.pdf

Annual Cricket Club trip

We have just returned from Gdansk, Poland which was this year's place for our annual Cricket Club trip.


Five days before the trip I had treatment to re-align my body, several areas were worked on and this left me quite tired and sore in places - my neck being the main problem area. So, it was rest, rest, rest and early nights. It took me two and a half days to begin to feel the benefit and then it was time to consider packing and getting everything organised.
The day before the trip the local weather was beautiful and my husband and I ended up going for a riverside walk where we live! I would hazard a guess that I was subconsciously stressed at what seemed the lateness of everything - although there were two half days remaining to accomplish everything that was required.
I just laid out my clothes and let it all happen around me. Even though we have been abroad several times post Stroke, I always find the packing and arrangements stressful, leaving my husband to take charge whilst I just make endless lists. Before my Stroke I was a well organised person, prioritising my work and I find it really hard not to be taking full control over matters.
The trip, as usual, worked like clockwork and without any glitches. The first and last full days we had free time to explore on our own and on the middle two there were organised full day trips.

Targ Rybny incl the medieval crane.

Statue of Neptune

Dlugi Targ by night

 The hotel fronted Dlugi Targ, the main thoroughfare. Gdansk is a cosmopolitan city and on two occasions has been a State in its own right. It is the main tourist attraction in the region due to its rich history and wonderfully rebuilt old town. Two key moments of 20th century history took took place in Gdansk: the first shots of WW11 were fired here and forty years later the cracks in the Iron Curtain were forced open by the Solidarity movement.
The first of our day trips took in the adjoining Baltic cities of Sopot and Gdynia. Sopot is a seaside spa town with the longest wooden pier in Europe and Gydinia is a city born out of the Treaty of Versailles in 1919 and is Poland's main harbour and seaport.
The following day we visited Malbork Castle which is UNESCO protected. it came to prominence in 1309 when the Teutonic Knights made it their military and political headquarters. Malbork is the largest brick built castle in the world. Here we had an English speaking guide - our tour took two and a half hours - and that was without any break! Indeed a huge site.

Grand Hotel, Sopot

Architecture, Sopot style.

Gdynia

Sopot pier

 

Malbork Castle

I managed to cope with several sets of staircases - even the very last one which was very steep, narrow and winding. People walked behind me in case "I needed a push" and the people in front helped when I reached the top!  My fellow travellers are brilliant and the ones whom I don't see from year to year really  noticed a change in me this year. We went out for dinner each evening and on our return to the hotel I managed to stay around for an hour or twos companionship with the group. The first year that I have achieved this.
On our last day I walked to the Gdansk shipyard to see the memorial to the shipyard workers and the European Solidarity Centre. A trip down memory lane for many visitors.

Since our return home I have been reasonably active and even managed two short walks down by the river. I am tired, but not like I used to be, and I do have a sore back, neck and knees. No doubt this will result in some form of treatment, but these days I still remain positive in my outlook. It has been, and still is, a lengthy road to recovery.
On the occasions when I awake during the night, I can still hear the voice of the Physio who looked after me so well at hospital! I lie still on my back and do exercises - pulling up my right arm so the shoulder touches my ear lobe and then straighten it to make it long.

                                                     Exercising is the key to recovery.

Summer and Autumn 2014 . . busy, busy.

Looking at my blog I was surprised that I haven't written anything about my personal journey for nine months or so.  Time really passed me by last year as there was such a lot going on, both within the family and also the town where I live.

My adopted home town is a very vibrant place with a real community spirit and businesses and residents totally got in the spirit of the Tour de France Grand Depart which passed through on Sunday July 6th.  Before that momentous occasion came The Great Bed Race, on the second Saturday in June, - a permanent fixture on the town's calendar.
The bed race takes months of planning and the town can experience 20,000 visitors on the day.

The town becomes decorated ready for TdF.

 The Race has a theme and the beds are accordingly dressed for the parade and then stripped down for the actual race.
 

 

Decorated for the parade.

 I assist as a  volunteer on Bed Race day - now in the information tent which is situated in the Market Square. The day is very lively and good spirited and I do enjoy the interaction with the public. However, it can be a seven or eight hour shift which can be very tiring. The following day calls for a big relax.
The Tour de France, Grand Depart weekend was very busy: pop up cafes and seating in the market square and also seating at the castle top with the chance to watch the race on a  big screen tv was something special to be a part of.
 The race itself was "over in a flash" as the peloton whizzed through town, however, residents and tourists stayed and had picnics and there was a general good "feel good factor" in town.

It was only to be expected that family and friends would want to come and stay for the weekend and we managed to accommodate an extra six people! It was really enjoyable to catch up with them, but it did take its toll and I needed a few days to recover.
Anyone looking at me would not know that I had a major Ischaemic Stroke, (blockage in an artery leading to the brain), July 2009, the only sign is my right arm and hand which have not yet made full recovery and also I walk with the aid of a stick. So, I'm not sure that some people would  necessarily understand how tiredness can affect me still. My body just shuts down and it can mean that I have to be assisted upstairs to bed and undressed. My hand and fingers can become taut and painful and my neck sore. When I get like this, I just have to accept that this is the way things are, and as frustrating as it is, rest and do nothing.
A few week after all this activity came another major festival in town - one of entertainment and visual arts. I have a great passion for this festival and  miss being part of the arts scene, (AmDram was my passion pre-stroke).  I try to go to as many events as I can and support all the volunteers who put on this wonderful festival.  My sister comes to stay for a few  nights and we pick and chose our events beforehand - she is the artist of the family. Once again, this time over a ten day period, I am out several times and once it is all over I am in need of much needed rest. It is also about this time that I have two sessions of acupuncture quite close together. I find this treatment works really well and improves my stamina or relaxes me depending on what I require and request on the day.  I have been having acupuncture for about three and a half or four years - post stroke. I find it to be really beneficial and would recommend anyone to try it. It is a personal choice and will not be appropriate  for everyone.
There is another festival in town - an innovative poetry and performance festival. Acts perform on the street and in various venues around town, this year will be its third year, and is gaining notoriety. Yes! I also try and attend some events but with friends who are like-minded.

It was in late summer/early autumn that family matters took over. My father-in-law decided that he wanted to live permanently in a different care home, one which specifically catered for the needs of disabled and amputees and my mother-in-law fell and broke her femur. Both were 97 and it all seemed quite sad that after 73 years of marriage that they would be further apart.
This resulted in my husband and I travelling more frequently to see them and this was made more difficult as they were now about thirty five miles from each other: a similar journey to what we have been accustomed to see my mother in law, but now a round journey of 196 miles to see my father in law. I had to cease driving after my stroke and have found this extremely frustrating - especially as I have to be so reliant on my husband or friends. Now the pressure was building on my husband who had to carry out all the driving and experience the added emotional impact. We travelled as often as we could to see my husband's father, but on occasions stayed overnight in a guest house. Travelling
great distances in a day is not agreeable for me as I can get painful and tender joints, back and knees.
Sadly, my father-in-law died in between Christmas and New Year and in a strange way I miss the journeys and meeting fellow residents.

At the end of October we visited London to see the poppies in the moat at the Tower of London. 888,246 ceramic poppies, each one representing a British & Colonial fatality of W.W.1. A humbling, awe-inspiring work of art.

We are very fortunate in that our eldest son lives in North London and so we always have a place to stay. Another memorable trip, but very tiring and again I required rest and treatment on my return.
Earlier in the year we visited the Chelsea Flower Show which is held annually at the Royal Hospital Chelsea, a very busy place to be! At times I found the crowds to be overwhelming and this made my head feel very "whizzy". I have learnt that by drinking a  bottle of water when this occurs to be beneficial. A strange feeling, but a quick fix remedy.

A busy few months, with a holiday touring Belgium and Luxembourg in-between the Bed Race and Tour de France also.

So, after five and a half years, I am well on the way to recovery, but at times not without problems.
I am able to go out and participate in events, enjoy nights out at the theatre, go out for meals, walks, holidays and generally have a social life.I try to maintain a normal routine during the day, but if I am going out at night I try to rest during the afternoon. It can be frustrating sitting down and watching my husband do jobs that I feel I should be doing.

I do have acupuncture around every three weeks, which I personally find beneficial. Approximately every five/six weeks I have treatment to put my body back in alignment. Walking or even the cold weather, when I tend to "scrunch" up my frame, means that my body slips out of alignment and this results in a very painful neck, shoulder, arm and knee. As I am walking more frequently and for longer distances, with my uneven gait, it is so easy for things to become un-aligned. The top,cervical, vertebrae is the key to the body's support and holding us up.

If I get overtired I do get the peculiar sensation in the head, it is like when a merry go round stops and you get off, but the head keeps travelling. A sensation which I have still  not lost entirely, but thankfully this is occurring less frequently. Occasionally, I am prescribed medication from my G.P. for this condition.

A simple but effective way of keeping the body warm, and therefore less likely to be "hudled", is to wear a scarf around the neck, wear gloves - even in the house I have a pair of fingerless on - and wear a hat on chilly days. This way the nerves are all kept warm and cosy.

Nerve functions

 I still take comfort from Jill Bolte Taylor, the Neuroamatonist, who gives such a wonderful insight to her stroke:https://www.youtube.com/watch?v=UyyjU8fzEYU

It took her around seven years to fully recover, so I am still work in progress and aiming to combat the effects of my stroke.

Action on Stroke Month 2015

May is Action on Stroke Month and this year the Stroke 

Association are asking everyone  to come together to help to:

 Make May Purple to raise awareness of stroke.

Bake it, wear it, plant it- have you got a great idea to Make 

May Purple?

Don’t keep it to yourself- comment below and let us know 

your purple plans and help inspire others to get 

stroke the attention deserves!

To find out more about Make May Purple 

visit: http://strk.org.uk/1IgxPph