Wednesday, 25 May 2011

Kate's book 'Running Free' is published and available

18th May - Kate Allatt has written a great book about her whole experience with Locked - in Syndrome, it's available in all good book stores, WH Smiths, Waterstones and on Amazon:

http://www.amazon.com/s/ref=nb_sb_ss_i_2_11?url=search-alias%3Dstripbooks&field-keywords=kate+allatt&sprefix=kate+allatt

As a stroke survivor there are a lot of things you can relate to in her book. It's a must read!

Tuesday, 17 May 2011

26th March - Back for Good!

In the words of Take That - sorry Gary - I am back home for good, no more hospitals apart from check-ups, follow up app'ts.

So to celebrate my full time return home, we were going to have a girly night in, but we let the men and kids join in! Friends who have been so supportive and helpful since I had my stroke last July, Leslie, John, Maxine and Mark, and Val came round for drinks and nibbles. In line with DHS of course I abstained - not! We all had a great afternoon.

As I had had to have my wedding and engagement rings removed because of my chubby sausage like fingers, we needed to get them rejoined and found a lovely lady called Caroline Richardson in Chipping Campden who did that, we collected them today and Nik replaced them on my finger saying we should really get them blessed and perhaps renew our vows.I said we'd have to go to Antigua to do it!


19th - 25th March - last week at OCE

Mon 21st Mar
   

Brought cakes in for staff and a tin of cakes for the physio’s which Ed had made. In physio, Jen went through the RASP assessment, this was to see how my touch and sensory stuff may have improved. In OT leisure I did another watercolour, great sky. In physio later on, Jen and I walked up and down the ward using the rollator.
Tues 22nd Mar
 
Group gym physio, did the Saebo glide work on my arm. Saw Dr HS and checked all is OK for discharge on Friday. I asked to see my MRI and CT scans and Alice G said OK, see me at lunchtime. In OT with Will hot and cold water on left leg/foot and also did cold water on arm to check all was still the same. I then tried putting my AFO on by myself and managed to do it. Will gave me a shoe horn/grabber to help me get my trainer on.
   
After lunch, I did a joint OT/physio sessions with Jen and Corinna, tried kneeling from the plinths onto a mat which was slightly better than last time, and this is to enable me to use a bath. It didn’t go too well, because it was hard to feel my left leg there! And I didn’t feel comfortable doing it either, so we stopped.

And if I want to have a bath, the best option would be to use a bath lift or a hoist (Or get a disabled room at Premier Inn with a low bath – more later see May posts). So I tried putting my AFO on again and managed to do it 3 or 4 times,likely I won’t be needing any community care on my return home - hurrah! My appointment with the community physio as an outpatient will come through on my return home.

Walked up and down the ward using the rollator. Alice talked me through my CT and MRI scans of my brain and the stroke, it was incredible, absolutely amazing, and I asked for prints of them, which she duly gave me. Jean and I had jam and scones for supper tonight!
 
Wed 23rd Mar

Unable unfortunately to do group physio and physio sessions this morning because of a tunnel vision eye test at the JR Oxford Eye Hospital.

It was a lovely sunny day today. Gerald and I sat outside in the sun after lunch with a cuppa. At physio later on with Jen, I did rollator walking outside up and down slopes for outdoor walking practise. I used the pc in the day room to catch up on some emails.

Said goodbye to Ronnie as she is on holiday from tomorrow, had a few tears. In the evening, Jean and I both fell asleep on our beds at about 7pm and we didn’t wake up until 8:30pm when Jean’s phone went off! Ginger nuts and tea for supper.

Thurs 24th Mar

In group physio I did all my Saebo glide exercises and walked up to the gym using the rollator by myself. Anne Marie and Phil came in for lunch at the NOC, and it is Anne Marie’s birthday today she is 36!

Another lovely warm day again.
   
I said my goodbyes to Ali as she is on holiday on Friday more tears. In OT/Physio after lunch with Jen and Corinna, they measured my fingers, to see if there was any difference from 3 weeks ago and with wearing my arm splint during the day to see if its helped or not.
 
I went through my ideas for my home programme i.e. what I plan to do during the day at home. I did some more rollator walking, blood test today 2.4 INR, 8mg warfarin. Jean had sausage roll in bed for supper.

Fri 25th Mar
Last day
A lovely sunny day for my last day at OCE, a certain amount of trepidation, glad to be going home and discover what's next in this journey of mine back to normality and independence. (Let's face it everybody's doing journeys so why shouldn't I!?

Sat outside at lunch again with Gerald having a cuppa. Said my very tearful goodbyes to everybody and Julie P said I was a special lady - which made me cry more. I know I will miss them all I've made some good friends here, and will keep in contact.




7th - 11th March - new AFO spotted- not UFO!

Mon 7th Mar

In for 10:30 today, did physio with 40 balls/2 baskets with Tom using Saeboflex. In physio later on with Jen, walked upstairs using my stick, then did 2 lots of 4 minutes on the treadmill, which was fun, good work. In OT leisure with Val, she went through the basics of doing watercololurs. I weighed 90.6 kgs today.

Tues 8th Mar

In group physio, I did the hip lifting exercises. In OT social group, we did a picture quiz and our team came second. After that I did physio, and was working on the treadmill again. I did 4 mins at 1.5km/h, then 4 mins at 1.8km/h, it was great again. Ed came to see Audrey, the child psychologist - nice to see Nik and him.

Wed 9th Mar

I had my new black AFO (A Foot Orthosis) fitted today, and it feels fine, but offers a different way of walking.
In physio, Jen was training so I did Saeboflex with Tom and did 70 balls.
OT with Becky,as Corinna still on hols, we went to Waitrose so I could walk around on my own, do some shopping, and then call Becky when I’d finshed. However, these things don’t always go smoothly, having bought a sausage roll for Jean, cranberry juice and a loaf for Annette and scones for myself, I didn’t have enough money to pay for them. Tried to ring Becky from the checkout but my phone had no signal - never a dull moment. So instead of doing 15 mins shopping, I ended up doing 30 mins. but i achieved a goal!

And even more fun, when we got back all the staff were all outside because the fire alarm had gone off. It turned out to be false alarm, so we were able to go back inside and have some lunch. No physio ‘til 3pm, where I did some arm work, a range of active and passive movement. Also did some stair work using my stick. Then back in the gym, I stood against the wall, weight bearing on my left leg with my right foot on a ball or in the air. Very tiring, left leg aching with new AFO.

Thur 10th Mar

I walked 800m up to Headington centre with Becky and Will.  Afterwards had double Saebo group, which wasn’t too successful, as my left hand wasn’t gripping too well, after the walk. So I did some functional tasks instead, lifting plastic cup to mouth, cleaning table with cloth and lifted one of the foam balls with my own hand, rather than using the Saeboflex.

Anne-Marie and Sue came in to do Saebo, having both being discharged the previous week. No lunch for me at NOC today, I was too knackered after walk then Saebo. In physio after lunch, I stood against the wall and did more weight bearing on my left leg, stepping up and down the wooden step, strengthening my left leg. No sessions all afternoon, thank god, I can rest. Temperature ok-35, BP- 113/57.
 
Fri 11th Mar
De-sensitizing with Will using hot and cold water in the shower. I had Nik’s lycra shorts on, went well apart from screaming went he first used the cold water, and getting my knickers wet, God knows what Nicky next door thought when she heard me screaming.
Went to hydrotherapy, Jen and I, Jean and Ali, Sue and Natalie. Weight bearing on left leg, raised right leg and right arm up in the air. Did front crawl legs, kicking left and right ankles. Floating on my front whilst wearing neck float and woggles underneath (what a dork, if only Danes swimming club could see me now). Walked out of pool up the stairs normally, no problem. No sessions this afternoon, so home early, hurrah!

12th - 18th March - weekend away!

Sat 12th Mar
weekend posting

Went down to Alison’s for Karl’s birthday meal. Nice food, good company, great evening. Nice to know I am able to cope away from home. Ed on sleepover at Henry’s.
Alison and Andy said anytime we want a weekend down there, we are welcome -  good friends offering help and support!

Sun 13th Mar

Fab breakfast at Andy and Alison's returned home, well stuffed!

Mon 14th Mar

In physio, working on arm stretches lying on front on the bed. Moving my left arm backwards/forwards touching the underneath of the bed. In OT, looked at things I need to achieve in the next two week and going through 5 things I have achieved, mobility, swimming, leisure/recreation. In physio, went through my arm range of movements (ARM). In OT leisure, I finished my first watercolour which turned out well, will do another next week. No blood test today, due tomorrow.

Tue 15th Mar

Group physio first thing, did gym programme exercises. In physio, tried to do Saeboflex, but my hand wasn’t playing. Ali joined in and we discussed Saebo- I wouldn’t be eligible as an in-patient to continue. OT with Will, we did hot/cold water de-sensitizing on my arm again.

At OT social group we debated “Should we have a royal family”- yes, but not the hangers on like Prince Andrew and his daughters. We also debated the HS2 rail link-too expensive,spend money on updating current rail services. Then the rest of the afternoon was free, weighed 90.6 kgs today.
Phil B went home today, (so only me last of the crazy gang/naughty table remains). So a bit of a tearful and emotional day today, thankfully Nik called in on his way home from Milton Keynes. Jenny called me and Cath Evans text me to see how I was doing. Still no blood test.

Wed 16th Mar

In OT, walked half way Headington with Corinna and put my resting splint on to see how my hand would be. It was ok, my fingers didn’t curl up. Physio had to be cancelled, because Jen had injured her ankle whilst playing netball last night, so I did some of my gym programme stretches.

I chatted with Dawn the psychologist, discussed my return home, sharing of jobs in the house, not overhelping me, trying to get my independence and my role in the house back as much as possible. She discussed a possible dual visit with Nik, they are available to talk to when I leave, and are also willing to talk with my employer, Educare, if required. I had a blood test today I and R 2.4, 8mg Warfarin.

Thur 17th Mar
St Patricks Day 

At group physio, I concentrated on the Saebo glide pole. Followed by Saebo group double session, which went well with help from Jane and good picking up of foam balls and functional use of arm.
Went for lunch at NOC with Nik, discharge meeting went well, discussed medication - when will it be reduced, will GP be advised of return home, and botox appt on 19th May. ICT only currently need help with new AFO, being referred to community physio with Sandra L. Heart monitor to be fitted 5/4/11. With regards to Saeboflex, I would need additional funding as out patient as I am ineligible not living in Oxfordshire - NHS postcode lottery!

Fri 18th Mar

OT with Will, hot and cold water de-sensitizing left leg in shower again. Hydrotherapy with Jen was cancelled because Sue B was ill – blast and damn ! So did two sessions in the gym, walked with rollator, did circuit upstairs, and walked back to room with it, it went well. To try it over the weekend, I brought it home. Early finish.

28th Feb - 5th March - Mutiny in the Dining room!

Mon 28th Feb

The Stroke Assoc’s Joe Korner, Director of Comms. was on BBC Breakfast News discussing raising awareness of younger strokes, so at long last my emails have worked! Back in for 10.30, Straight into OT with Will more de-sensitizing using hot and cold water on the left arm.

In Physio I did some movement work on my left leg and weight bearing on it, standing on it and trying bend knee, I also did some stair work. Afternoon physio went well doing more Saebo but with larger balls and rings did quite well but knackered after so I slept and the nurse had to wake me up for tea!

Tues 1st Mar

Saw Dr HS whilst in group gym physio, all ok, and told him about cardiac monitor appointment. In OT Will started to do de-sensitizing on my left leg using hot and cold water again. Cold was a 10 and was unbearable to start; the hot was a lot better. Cold went to being bearable.
In OT Social Group, we all went over to NOC (Nuffield Orthopaedic Centre) and had a Costa coffee. Then in OT leisure I discussed options of what I could do with Val and opted for watercolours and silk screen painting if there was time. In the last session of physio today, Jen and Ronnie helped me onto the upright exercise bike, which was great and I really enjoyed it. I did some further work with them up and down the stairs and walking.

Wed 2nd Mar

In physio, I worked with the Saebo pole with my left arm and attaching the hand strap to be able to move the arm up and down and left to right on the pole. Didn’t go to psycho group. OT with Becky, I went through things I need to do this week as Corinna is on a skiing holiday in Austria for 2 weeks.

We will walk to Headington with Becky and Will to support me as I walk, checking my hips and pushing the wheelchair. Also discussed being able to put my bra on myself, getting in and out of the bath and Wi-Fi on the ward. In physio this afternoon I worked on more leg exercises for my gym programme-knackered.

Nik called in from his way back from Cambs/Beds with sweety supplies and brought my laptop in.

Supper was shit, they ran out of all sorts, not the staff's fault at all  (I think after everybody had watched the previous nights programme on Channel 4, Dispatches, about the food provided via G4S and Aramark, we were all incensed by it). The contract manager did come and see Annette there and then, and the following day, the catering manager came to discuss menus with Wendy. Patient Power!
Thur 3rd Mar
Group physio gym programme first thing doing the Saebo pole exercises. Saebo group double session, I managed to pick up 40 of the large balls and then did functional arm movements, lifting up plastic cups to mouth, and lifting plastic jugs to pour into cups. After Saebo went over the road to NOC to have lunch with Anne-Marie and Phil, Sue B had optician appointment so couldn’t come. No sessions in the afternoon.
Catering manager came to see Wendy about the food, supper was slightly better, nice chips and extra sausages. Typed up blog on MS Word.
Fri 4th Mar
Splinting first thing, looking at my arm/hand splint with Becky and Jane and deciding it is adequate for my needs at present. In physio, did work on bed lifting and raising my left leg. Physio in the afternoon, stairs practise with and without stick. Early finish, home for the weekend!
Sat 5th Mar
Went to Lower Slaughter, had a good practise walk of about a mile along the river. Went to Budgens to do some shopping and pushed the trolley around on my own, met Jane Slatter whilst we were there.


22nd - 27th Feb - normal clothes!

 
Tue 22nd Feb

Showered and managed to get my robe on then managed to walk out of bathroom to bedroom and no slips. In group physio this morning I did new leg exercises. In Social group we did a Pop quiz Ian and I were a team but I managed to get a higher score to win. In Physio with Ronnie and Jenny I did going up and down stairs using a stick without using a rail it was hard but good easier going up than down. In OT with Corinna we went to Waitrose again I pushed a trolley on my own while Corinna stayed a distance away I bought some hot cross buns for Anne Marie, Phil and I. Weighed myself tonight  90.8 kg.
Wed 23rd Feb
Orthotics at 9.45 Drew took a plaster cast and I chose to have a Black AFO. I then had 2 physio sessions together to sort out my SaeboFlex, practiced lifting my arm and squeezing fingers whilst lifting foam balls into a basket and, it went really well I was pretty tired afterwards. I slept after lunch today because I was knackered form Saebo updated my blog from the PC in the day room. Nik called in on his way home from work. As it's half term Ed was on a sleepover at Henry's?

Thurs 24th Feb

Did revised physio exercises. Nik visited Dawn the Psychologist.  In OT Corinna had a look at my left hand and went through each finger getting it warmed up and suggested I do this before Saebo group. In Physio I did more stair work using my stick up and down stairs, not using the rails and moving normally, then finished for the day.

Fri 25th Feb

I managed to put on both DVT stockings and my AFO, whilst waiting 40 mins for a nurse to come and help me. OT was cancelled as Will was off ill.  ln Physio I did SaeboFlex did lifting/dropping small foams balls into basket. Finished early today Nik and Ed picked me up at 12 we had lunch at NOC and then drove to Cheltenham to watch the King’s Speech, fab film – lovely afternoon.

Sat 26th Feb
weekend posting

I wore ‘normal’ clothes HURRAH!! Jeans and nice top, NOT Leggings or Joggers! Browsed around Shops at the Maybird centre in Stratford on Avon.


Sat 27th Feb
 
Had nice meal at ASK, came home and watched Due Date, Very Funny! great weekend! Is normality creeping back slowly........?


19th - 21st Feb - Goal planning and puppies!

Fri 18th Feb

Had 2 hydro sessions this morning which was really great, exercises I do in the gym are a lot easier being weightless in water. After hydro Anne Marie, Sue Barnes and I met Phil for lunch in NOC, and I had OT after lunch. Blood test taken today INR 2. Home for the weekend. This should be my last day of 6 wks we meet on Monday to discuss.

Sat 19th Feb
A weekend posting

Nik, Ed and I went over to Jane and Richard’s to see the 4 guide dog puppies, Molly's last lot of pups, and had a lovely dinner with them.

We do have some very good friends and neighbours who have been so so supportive to us, inviting us for meals, Sunday lunches, especially at Christmas when Caroline and Austen invited us for Christmas dinner, we just didn't know what we were going to do, offering  Nik help with household type stuff, giving Ed lifts to or from school events, and this help has really been appreciated by all 3 of us, thank you to all our reliable and supportive friends!

Mon 21st Feb

In for 9.30 and group physio went well and discussed new exercises for gym programme. In OT did more de-sensitizing with Will using hot and cold water on my left arm.  Physio went on the treadmill did 1.5km for 7 minutes with Kim and Jenny. In Psychology with Ruth she was reporting back on all my assessments I’d done very well and in some cases scored higher than average - be amzed!
Goal Planning Meeting today with all dept’s OT, PT, psychol & DHS. I am to use a higher walking pole so I am walking more upright, discussed no alcohol for 12 months – OMG bit late been drinking since August, not getting trashed just occasional Pimms or glass of wine, in fact in Cheltenham they called me Mrs Pimms cos I had the small cans from Educare girls on my locker!.

Vasculitus may not be the root cause of stroke, so I'm to have 72 hour heart monitor (aorta fibrillation) fitted at a later date. No further need for DVT stockings.
As this is my 6th week, and they love me so much, they feel I will benefit from a further 4 weeks rehab, would I like to stay, of course, i'm lovin' it! Discharge meeting 7/3/11, looking at discharge date 25/3/11.

Sue to write letter to MP re level of stroke services in UK and how good Oxford is, I will be OK to fly to Cyprus must remember to get up and walk round plane. Further Botox appointment with Prof K to be arranged for end of April.

Tue 22nd Feb

Showered and managed to get my robe on, then managed to walk out of bathroom to bedroom and no slips. In group physio this morning I did new leg exercises. In Social group we did a Pop quiz Ian and I were a team but I managed to get a higher score to win. In Physio with Ronnie and Jenny I did going up and down stairs using a stick without using a rail it was hard but good easier going up than down.
In OT with Corinna we went to Waitrose again I pushed a trolley on my own while Corinna stayed a distance away I bought some hot cross buns for Anne Marie, Phil and I for tea. Weighed myself tonight  90.8 kg.

15th/16th/17th Feb.

Tues 15th Feb

Good sleep in new room sharing with Anne Marie I had a shower and once I was up and about realised I’d pulled a muscle in my lower back,poss spasm because of this I did gentle sessions all day in Physio I did the e-link which is a computer based exercise programme.

In OT I did de-sensitizing with Will hot and cold water on my left arm. In Social Group we had a quiz then last session of the day Physio Jen rolled me over on my front and we managed to get my leg up behind me and my arm to the side. Sorted Dad out for early March.

Wed 16th Feb

In physio back was still aching so Jen did some gentle massage on my lower back and also rolled me over on my front while she massaged the area.
In OT I did some clothes folding with Corinna and learned how to carry clothes, for example, from washing machine to outside or upstairs, in a rucksack on my front if I needed to. In Physio this afternoon I did some gentle back exercises.
Thurs 17th Feb
My back is a lot better today I had a shower and put the hot water on it to help ease pain. in Physio we worked on my arm lifting it straight up and then down, then in the second physio session I sat on a large gym ball doing balance and also did squatting against the wall. First of my new tablet, Bendroflumethiazide. I’m taking it to reduce the swelling in my left leg and it’s a diuretic which means it makes you wee a lot. Weighed myself today 91.2kg.

Monday, 9 May 2011

Monday 14th Feb Valentines Day

Early start, and straight into group physio at 9.30am. In OT I did mirror imagery with Sally watching Corinna and I, and we went thro’ the list of hand/arm activities I’d like to achieve.

In Physio did more walking without my stick and within the parallel bars. Being Valentines my lovely man came to visit me as a surprise with some flowers, I cried yet again it’s the labality! Changed rooms today quite out of the blue, I am now sharing with Anne Marie Slade.

 fun to have a giggle as you are going off to sleep, and she farts worse than me!

Thurs and Fri 11/12th Feb

Slight lie in except Julie was up and out for breakfast at 7.40am came back and switched on the room lights! nice - not! In Physio I went on the treadmill with Jen and Tracey it was great fun again, nice to be almost walking properly loved it.

Corinna went home poorly so I did OT with Becky and continued/looked at list of arm activities, she gave me the lovely bra angel to try! Discussed ways of carrying cutlery, mats into lounge to set table.

Did hydrotherapy in the pool at NOC, for the first time it was just fantastic to be weightless and  to be in water again, my fave choice of exercise, I cried twice loved it! Wore a neck float and used woggles on my back to keep me afloat, we didn’t need to ring Greenpeace!

Weighed 91.6kg today.

Friday 12th Feb.

In OT I did some more mirror imagery and was filmed eventually after much giggling, by Will, and watched by some Japanese visitors from Tokyo.  They were visiting the centre to get ideas for their own centre in Japan and they joined the photography group session, the focus (relevant!) being on zooming in and out on objects.

Blood test due for INR but not done.

Physio last session of the day before weekend leave, I was on the WII for improving balance, heading the ball, with Jen by my side, I was knackered slept in car on way home.



Weds 10th Feb - Dad visits

Group gym physio went well. In OT Corinna whizzed me up to Waitrose in Headington, kept her distance from me and let me push the trolley round on my own to see how I managed, bought some scones and clotted cream for Anne Marie, Phil and I to enjoy at tea!
Dad came to visit me today he brought some flowers, and it was really nice to see him, I just wish they were all closer, he was staying at ours looking after Ed for us cos' Nik had 3 days training at the office in Fareham, so Dad saw me do a physio session. Then we went over to NOC for a cake and a cuppa.

Good day.

Tues 8th Feb

Saw Dr HS, no news yet on further funding for extended stay from Gloucs PCT, met Alice and Henrietta new on ward Doc and House officer, HS asked that I be referred to Stroke Clinic again to discuss poss vasculitis being cause of stroke. In combined Physio/OT . Corinna asked me to make a list of things I struggle to do with my left hand/arm - open and read newspaper, holding a pan or wok in place whilst cooking, doing my bra up, pulling jeans/trousers up with both hands.
Showered, easy morning, not many sessions and late breakfast. In physio did treadmill work with Tracy and Roni. In O.T more mirror imagery with Will.
At Social Group after lunch we all made Valentines cards oooooooooooooooooooo!
In combined Physio/O.T we worked on my arm and I managed to lift a plastic cup to my chin/mouth and learned a new stretch for my arms, above and over my head and down again.