Friday, 2 November 2012

October - Liverpool Marathon month

w/c 1st

Ed is doing a great varied week at the Cotswold Conference Centre for his work experience week from school, suited and booted and looking forward to working on reception!
Charles is heading back to University.

On Wednesday I go to our younger stroke survivor network meeting in Gloucester, driving on the motorway again, this time it’s darker and later, we had a good meeting with Perry French and Sarah Miller attending to discuss our future, funding, help from Mel and Louise, and lack of funding to maintain Mel’s role and so she will finish 31.10.12 Avery nice surprise for me too,Perry presented me with 3 certificates, as I had been nominated 3 times by 3 different people for the Life After Stroke awards in recognition of my work helping others.

Thursday and I’m back to the JR for a follow up on behaviour testing – not my behaviour!  the behaviour after the research, so I did pegs into holes, beanbag, etc.

On Friday, fed up of waiting for NHS chiropodist I booked to see a private chiropodist in Moreton, it is a corn and quite a deep one behind my nail she scrapes out all the hard skin with a tiny scalpel and oh my God does it hurt, no wonder I have been in pain, she gives me a little protective cushion pad to wear under the toe, to stop it re growing.

In the afternoon I went along to see my befriendee and his partner in Broadwell, they both look well, he is much improving, she has a break booked, they have a referral for OCE and she is keeping her fingers crossed all will be OK.

On Saturday we should have been going on a boat on the Avon from Evesham as a surprise 50th for Jane (Giz) however because of the heavy downpours, the Avon is well up and the river is rather dangerous plus the place where we need to get on is flooded! So Debbie called me and the party is moving to Rose’s house, the weather is lovely, a bright sunny day, really great to see Jane & Jules and we had some bubbles with them to celebrate.

w/c 8th

Dad and Jen O are back from Barbados today, lucky devils, and they’ve had a lovely time, and great weather.

Tuesday and I’m over to St Paul’s in Cheltenham to see the NHS chiropodist, who does a little more cleaning up of my corn, and has referred me to North Cotswolds for a follow up appointment. I then went round to see Dan at the gym but he wasn’t there.

Connect meeting at Hesters Way RC on Wednesday, it went well, a lot to discuss/catch up.

On Thursday I met up with Julie at Dormer House School for a cheque presentation from Xav F for £200 for his charities day presentation about Connect and how we have helped his Dad and family as a befriender. I went to my Doc’s for a blood test afterwards.

Sunday 14th the time has come, after all the weeks and miles of training, Nik has his Liverpool Marathon with Dan’s help and Ed his Wirral10k, we went up on the Saturday and stayed at the Premier Inn, West Derby, not far from where my Dad used to live when he was younger, in fact the site of the hotel he thinks is where my Aunty Marj and Uncle Ken had their wedding reception.
They both did really well, Ed did his 10k in under an hour and Nik did the marathon in 6 hours and 12 mins, I am really very proud of both of them, a great achievement, and I got the chance to meet Richard and the lovely Scarlet.

Nik and Dan after completing the marathon, just in front of the Liver buildings.

Between them both Nik and Ed have raised over £3500 for The Stroke Association.
Whilst the boys went off to start at 9.30 Dad and Jen O picked me up from the hotel we drove into the centre parked up and met up with Ed who had got the train back from Birkenhead, with help from Aunty Bary and Uncle Dave.

Charles didn’t bother to turn up having had a late night in Rochdale, nor did anybody else to support them/us, Cath and Dave were busy as were Elaine and Kev, tried to call Jenny twice and no call back received!

w/c 15th

I had a really great session with Dan, especially now that my left foot/toe is better and improving, 4 x 5minute bursts on the Wattbike, 10 mins on the Technogym and 10 minutes on the Balance Master.

Wednesday I awoke in the early hours to be quite poorly, first time I’m ‘vommed’ since the stroke so in a way it’s good to know that all things are in good working order!

Friday I went over to see Jannine for a cut n colour, nice to see her for a chat and catch up on things…..! she also did my nails for me and shaped my thumb nail talon!

w/c 22nd

Ed is on half term this week I have a meeting with Gavin’s old boss Ruth to do some research with her regarding “the experience and expression of social cognition changes for stroke survivors”. We chatted for an hour or so it was very cathartic.

On Tuesday Ed and I went over to Dan, Ed went on the TRX bike and I did 2 x 10 minute bursts on the Wattbike, then hurrah back on onto the alter G treadmill after 2 months of no walking, did 25 minutes, 800m at 2km p hr, very pleased and not too knackered!

Wednesday Andrew was due to come over to make a start on painting & decorating Ed’s bedroom, however he was full of cold and we postponed until Friday…………

Matt, Henry  and Dan are here on Thursday to play FIFA13, my lounge is taken over by hormonal 15 years olds so I work in my office/kitchen!

Friday I am over at the JR to have research follow up MRI scan and some behaviour testing, Nik took me over and we left Andrew and Ed to get on with painting Ed’s bedroom... therein lies a tale, job done sort of, however white paintwork not, so Andrew coming back following Tuesday, paint on carpet, not a good end to the day……
My cousin Elaine who lives on the Wirral, txt me about an article in a free mag they get from the Atogether Now charity and this was it!

I have applied for a part time job at a local company - fingers crossed, and also applied online to my old Christmas temp job at M&S Simply Food, well I can only give it a go can’t I!
An uneventful weekend, we went to ASK for lunch on Sunday, which was nice, weather not good.
w/c 29th
Monday, a nice early start for me as I’m off down to the office with Nik to discuss reporting on the CRM, it went well, so so nice to be back in an office, this is what I really miss, office banter and daily contact with people.
Andrew came and did the white paintwork. I went over to Dan’s and did 2 x 10 minute bursts on the Wattbike, times/distances/speed improving every time.
On Wednesday I was due to do a chat/presentation about Connect at the Prestbury Centre, however Nik’s turn into A&E for a small problem, so I also missed younger stroke group meeting in Gloucester.
Thursday night we go to Ed’s sixth form open evening at his school, it went very well, we were all pleasantly impressed. Just 2 more to go.

Saturday, 20 October 2012

August - Olympics and Paralympics

w/c 6th

I was due to visit my befriendee in Cheltenham he cancelled due to an OT visit, I went over to see Dan for an hour, I have a really bad achy left foot so I did some Vibrogym work no treadmill, Dan thought it was my plantar fasciitis. I lifted 4kg weights with my right arm and tried my left arm too except it couldn’t hold 3 or 4 kg weight.

When I came home Charles called to say he maybe down earlier than expected as his Dad had had a heart attack whilst working on way back from London. Nik was driving back from Scotland so diverted back to Charles’s and picked him up and brought him down to ours, as his Dad is in the JR at Oxford, so with Val’s help we went over to see his Dad that evening, what a day!

I got into see my Doc the following day, he checked out my foot and I apparently have gout! Great, taken off one lot of medication and given another, I didn’t go to the Connect meeting as I was taking Charles to visit his Dad, he had 2 stents in and came out on the Friday with his heart not as badly damaged as first thought.
Ed is dog sitting a lovely black Labrador called Molly this week, she is lovely, very well behaved, and in season!
On the Saturday Nik and Ed did their first proper 10k race at Moreton Morrell, and they both did really well, Ed doing just over the hour 1hr 1 min and Nik did 1 hr 20 mins, Andrew came to help me in the wheelchair, and we took Molly. It was a nice day, we were able to sit out in garden and have lunch.

Sunday, we went to Batsford and had a nice lunch and a walk around the garden centre we saw Marianne and Mike with Hector the dog.

w/c 13th

Catch up with stuff Monday, did some crm, searched jobs website.

Over to Dan with Ed, having worked on my leg/legs for a year we’re going to look at getting the arm working, and also my foot is still aching from whatever is wrong with it, so I did some Vibrogym, and the TRX rip trainer for my arm strength.

Young Stroke network meeting at a new venue, Wootton Hall Social club, good meeting, Ed came with me and I took him to the shopping centre in Gloucester to pre order FIFA13, and I drove on the motorway for the first time, there and back!

Lewis’s 12th birthday, gave him a call and wished Happy Birthday, Hal has his results and got 3 passes.

Went back to see the Doc about my foot and he reckons it might now be Morton’s neuroma, so he injected some steroid in it between big and second toe. I was interviewed and so was Ed by Radio Gloucs for their Tuesday morning breakfast show, discussing younger stroke survivors and stroke services in Gloucs.

Saturday night Ed working Nik and I decided to go to the cinema to see ’Wedding Video’, however, my left foot was so bad that we ended up going to A&E at Cheltenham, had my foot x-rayed, got some codeine and more gout tablets, and missed the film! Great evening in Cheltenham A&E comparable to the mutants bar in Star Wars, why did the drunk choose to sit next to me and tell me about his pancreatic cancer!

w/c 20th

An hour with Dan on Tuesday and because of my foot pain had a small go on the I had a go with the Im-AbleX computer game rehab equip for my left arm/hand, because of my aching foot.

My car had its first service, I can’t believe I‘ve had it almost a year now, where did that time go?!

On Thursday I went to the OCE to get some more botox, more put into my left hand and arm this time let’s hope we get some more action with it.

w/c 27th

Bank Holiday, Ed worked lots over the weekend. Nik and I went for a picnic which was nice to do.

On my hour’s session with Dan I did some more Im Able work.

On Wednesday I went to the John Radcliffe (JR) to have my baseline assessment for the electrical stimulation research I am doing with them for 2 weeks in September, all went well, there’s going to be a good lot of work/physio on my left arm/hand, and they tried TMS on my head as pic below shows! We collected Charles from Oxford station, as he’s coming down to the Paralympics with us on Friday.

Back to my own GP again on Thursday to see what could be done about my foot, it does seem like a Morton’s neuroma, I can’t have any more steroid injection for 3 weeks.
Friday – well what can I say, I have so looked forward to this day, after seeing such fantastic sport with the Olympics. We drove down and parked up in blue badge parking in Westfield. First of all we met up with Ellie and Michael and shared a nice bottle of Laurent Perrier rose at the champagne bar, a great day to start our Paralympics day.

We had a good walk around the park, along the river, a trip to the megastore where we all bought T shirts, memories of our fab day.
We made our way to the Olympic stadium, the seats I had booked were quite high up and no lifts available so we were able to swap them for better seats quite easily, the whole process was very smooth and well organised, a truly amazing, inspiring and humbling day.
To add icing on our cake, on the way out we met Tanni Grey-Thompson and I had a great chat with her, she remembered meeting at the Cotswolds Conference Centre in Broadway 4/5 years ago, told her about my stroke , I asked if she knew if there were any stroke survivors taking part, she didn’t know but did say there were some ‘hemi’s’ taking part – hemiplegics- made my day!

A great end to my August.




September 2012 –Trans cranial electrical stimulation research at the JR

w/c 3rd

Tuesday over to Dan’s for an hour using the Im-AbleX, good hand/arm activity using computer games to move the hand & arm, it was good my arm did ache a bit the day afterwards but all round good arm activity. I am limited to arm work really because of bad achy foot/toe.

I had a Connect meeting over at Hesters Way Community Centre then drove over to the Prestbury Centre where Julie and I did a presentation about Connect and what we do, what we offer. I saw the Scottish lady I initially shared a ward with at Cheltenham, she unfortunately had had another stroke but was doing OK.

On Friday Nik drove me over to the John Radcliffe, FMRIB dept. to have an MRI scan  before the start of the transcranial research next week, very very noisy and typical ’phantom’ feeling on head with the shuddering of the scanner.

Nik did his first real long distance run with Dan on the Sunday.

w/c 10th

Not a particularly exciting week this week I had an hour with Dan on Tuesday, on the Im-AbleX, no leg work again.

On Thursday Nik had a call over on Anglesey with Dave B so I went with him which was very nice, we went and said hi to Mum and had a windy walk on the beach.

The Great Western had their beer and cider festival weekend, Ed did lots of shifts earning the monies!

On the Sunday Nik did another long 18 mile run over towards Snowshill, Springhill I was going out to meet him and got a flat tyre, so called RAC they came out to fix it, couldn’t and my car ended up going on a transporter over to Kwik Fit at Stratford for a new tyre!

w/c 17th

I went to see my Doctor again about my foot, it’s not gout, it’s not a Morton’s neuroma, whilst cutting my toe nails after a bath Nik found hard skin on the top of my third toe of affected left foot, boy did I scream, so we now think that it’s a corn that has been causing me trouble in walking for the past 2 months – thanks Doc for all the unnecessary pain, lack of treadmill exercise, additional drugs & steroid injection!

She agrees and refers me for an NHS chiropodist appointment, which I  then have to chase up, North Cotswolds hospital in Moreton can’t see me until 25th October, another month of pain and no treadmill, so I opt for an appointment at St Paul’s Cheltenham – of which more later!

Today I start my electrical trans cranial stimulation research at the John Radcliffe Oxford, I have to organise a taxi with Leigh because I have no car due to tyre trouble on Sunday!

The physio on my affected left hand and arm is very intensive lifting a weight on my wrist in front of me and to the side, stretching down to my toes, moving a bean bag to 5 points on the table in front of me, scrunching a towel, trying to pick up a cup, and doing all this with a funny headband on and 2 pads where the current or (not) as there might be a placebo, is being passed through. I was knackered and really glad that I had by necessity booked a taxi, I fell asleep all the way back.

So I did this every day for the next 4 days until Friday and the following week. Ed did his practice D of E silver hike over Long Mynd in Shropshire between Thursday and Saturday and they were luckier with the weather this time.

I had taken part in a Ford Open Doors event competition and got to hear of two prizes I won, one was a private tour around Manchester United on 27th Sept and the other was a trip to Jackdaws Castle to meet Jonjo O’Neill and other jockeys have breakfast with them and a tour of the stables, again on the 27th which I couldn’t do because of the research at the JR.

Nik did another 18 mile run on Sunday, and then we went to the Fossebridge Inn to meet up with Kath and Andrew for Nik’s birthday, we had a lovely meal.

w/c 24th

Nik’s birthday today, and Ed goes back to Ashes Hollow for a school Geography trip, and they got pee wet through, so did the camera!

I carry on with the electrical trans cranial stimulation research at the John Radcliffe Oxford Monday to Friday with an follow up MRI scan on the Friday.

I met with Christine Clark the Sister in charge of the ARU at Tewkesbury and she is now the stroke co-ordinator for North Cotswolds.

Charles did the Manchester United tour and Sally O did the Jackdaws Castle tour and they all had a lovely time.

On Friday I met up with Charles at the hospital as his Dad was having 2 more stents fitted, we met at FMRIB after my MRI scan,  he came over later and stayed the night at ours as his Dad had an overnight stay.

Saturday - Nik and I went to see Dan, Nik was on the treadmill and did 12 miles, I went on the Wattbike and really enjoyed it

Sunday - Nik is up bright and early to do a 20 mile run with Dan.