Muscle strength tests!

Yesterday I saw my physio to go through a strength test that she previously did with me in March this year on my arms and legs. Thankfully most of the results were the about the same as they were in March which is really good news! All the swimming/hydrotherapy, pilates and cycling are obviously helping my muscles keep working.

The one thing that has definitely got worse is the foot drop on my right foot - I can't now flex that foot at all without assistance and do catch my toe quite a lot when walking around. I will now be referred back to Gordon (orthotics) for more help/gadgets.

Sue’s Story

As part of our ‘One Big Question’ series at Aylsham Community Church, Ann & Sue have a chat on the sofa.  The topic of the week was ‘If God is love, why does he allow suffering?’

(apologies for the video quality)

Summer 2012

Sorry it's been so long since we updated but we've have had a great summer and are now getting back into the school/work routine.

At the end of July the Atthill family spent a hot, sunny week in Spain.  We had a much needed relaxing week enjoying the sun, sea, pool, reading and eating! Our holiday home was literally 50m from the beach so I didn't have too far to walk.  On a day trip to Barcelona we made the most of the Tourist bus, hopping (or stumbling with support in my case!) on and off to see the sights.  One thing I did discover this summer is that even the smallest wave can now knock me over, it's certainly a quicker way of getting in the sea!!

In August we spent a hot, sunny week at Norfolk Showground! Along with 6500 others we enjoyed an amazing week at the Newday youth camp where we had the privilege to spend time with our youth group as they met with God and enjoyed worshipping him with so many other young people. One night, in the meeting in the Big Top, 306 young people made the decision to give their lives to God while 250 others were healed with amazing stories to share. God hasn't healed me yet but he spoke to me a lot during that week and I have faith that he will heal me, do please keep praying for that.

 

One other highlight of the summer was our day at the Paralympics. We managed to get tickets for a whole day including swimming, wheelchair basketball and athletics in the Olympic Stadium in the evening. It was great! It really was amazing to see how well athletes could perform and compete even with loss of limbs or muscle function. There was a lot of stairs to climb, especially in the Aquatics Centre where we were right near the back but I managed it with a bit of family help! I also remembered my self-inflating cushion which has been a great buy to compensate for my distinct lack of bottom muscles to sit on!

I trust you all had a great summer as well...

Cushions and a basket!

Finally saw my OT this week, she was disappointed because they had sent her something different and not the beanbag cushion she'd ordered for me.  However she went to the 'stores' on her way here and brought me just a normal padded waterproof cushion which is actually ideal and has made bathtime much more comfortable! I think I will ask for another one now so that all my bony bits are supported at once!!

Peter brought me home a great gadget this week too - I now have a washing basket with pop-out legs which is ideal for me as I am able to lift it from the higher position and put out the washing without having to bend down so far.

I had my first Pilates session on Friday which was good but also frustrating!  I hadn't quite realised how many simple movements I can't do now.

The difficulty with cars…

I have become increasingly aware of the things that I can do and take for granted which Sue now struggles with.  One such area for Sue is the simple pleasure of driving a car.

• Getting in and out – having room to swing your legs round before attempting to stand and, if the seat is too low, standing up itself then also becomes an issue.
• Steering – with weakened arm muscles heavy steering that may seem normal to you and me becomes an issue.
• Changing gears – for the same reason as the point above.
• Looking over your shoulder – twisting and turning especially when reversing is an issue and therefore good visibility out of the back window is important.

Therefore we have a new addition to the family, a lovely little car for Sue.  Why?  Firstly because of the issues listed above and secondly because she’s worth it!

Home Visit

This morning I had a visit from Liz (a neuromuscular nurse from Colman Hospital who is my key-worker) and Joni my physio. The aim was to review my treatment/support so far and look at any other issues.

We talked through lots of things and I now have a few new things to try and Liz is looking into some other aids that may help me. One of their suggestions was that 'Pilates' would be beneficial for me so I am now looking into local classes.

I should be seeing Angela, my OT, soon with the bath aid she has got for me - am looking forward to a more comfy bathing experience!!

I do feel that I am being very well supported by a great team of people and I can call on them at any time if I need help. I will have another review with them in 3 months time.

New bike!

I am very excited to finally have a new bike!

It is a folding bike (as modelled and recommended by my good friend Jenny!), so we can take it places for me to ride instead of walk, and I can get on and off it without balancing precariously while trying to lift my leg over the cross bar!!  Have had a trial run to town and school and all good so far (as long as I don't over load the panniers!)

My physio came to visit me at school last week.  She brought a stool on wheels for me to try out and also chatted through other things/strategies that might make my life easier and help me conserve energy. So far I haven't been great at putting them into practice but aim to try!

Thank you for all your messages and prayers. I am very pleased to say that I have had no pain in my hip for the last couple of weeks which has been great and I've been good remembering to use my stick. I used it at school for the first time in Outdoor Learning and one of the children asked "Why have you got a stick? You're not old!" which kind of made my day!

Walking Stick & Swimming

By the end of the week before last, I was in a lot of pain with every step, not just after walking anywhere, but by the end of each afternoon in Nursery too. So I rang my physiotherapist and was able to see her last Monday.

She thinks my pain is caused by 'Greater trochanteric pain syndrome' or 'trochanteric bursitis'. The cause is usually due to inflammation or injury to some of the tissues that lie over the bony prominence (the greater trochanter) at the top of the thigh bone (femur). The main symptom is pain over the outside of the upper thigh. It's usually common in slightly older ladies but the state of my muscles and the resulting way I walk now has probably contributed.

One of the treatments is to take anti-inflammatory tablets which I have been doing and also rest (which I have tried to do)! My physio also suggested that a walking stick would help take the weight off that leg when walking so I now have a walking stick (a black one!) which I have been using.  The pain is now much less than it was which is a relief.

One of my friends, who teaches swimming, very kindly had a look at my swimming this week. This was really helpful as I am still trying to swim like I always have, but my body just can't do that anymore so she was able to give me lots of tips to help me.

I have to say that the speed of response from my DLA application was very impressive and they have awarded me lower level mobility and care allowance which I feel is a fair representation of how I am at the moment. Apparently I can still walk too far and too fast to get a blue badge though!

Sue's Update

A number of times over the past 2 weeks I've been talking to Peter and he has said, 'You should blog about that' so here I go!

• Going to the tip with Peter I discovered I can't reach the car boot to pull it down anymore.
• Filling the kettle is hard work - my left arm is quite pathetic now but it's hard to do right handed in our sink, so I now have to use a jug to fill it.
• I shouldn't go swimming and then drive any distance on the same day.  The steering in my car gives me arm ache.  Peter's car is easier to drive but harder for me to get in and out of.
• I had a visit last week from Andrea, the Neuromuscular Care Advisor for Norfolk and Suffolk.  Her role is to provide advice and support (practical and emotional) and oversee all my care etc. It was very helpful to talk through many things with her.  She recommended I apply for DLA and a blue badge.
• I had a dream that my legs were healed and I could run, disappointed to wake up and discover that I couldn't but it has renewed my hope for healing!

Yesterday, Peter accepted a job offer to work for YMCA Norfolk as Project and ICT Implementation Manager and he starts on 30th April.

Alton Towers 13 years on!

Yesterday Peter, Owain, Yasmin, Libby and I left Aylsham at 5.30am to go to Alton Towers. Yasmin won tickets to go in October and we've been looking forward to it ever since. We were there for opening time and left at closing time and had a great day. Last time Peter and I went was 13 years ago....there are now many new rides, much longer queues and to me it seemed a long walk to get anywhere!

Although I can still walk, if quite unevenly, I have started getting pain in my 'glutes' on my left side. It started on Sunday when we walked to church and back - by the time we got home every step was really painful.  Yesterday was much the same - in the morning I was ok (mostly queueing not so much walking!) but by the afternoon each step was very painful again and I felt very frustrated at holding the rest of them up, although they were all very patient with me  - could have done with a wheelchair to be honest.

By the end of the day my body did ache all over but it was worth it to go on all the rides - still love the adrenaline rush!

I had a visit from my Occupational Therapist on Tuesday, she is part of the team from Colman Hospital. She is lovely and very helpful with suggestions of ways to help myself with every day routine/jobs. I think I have adapted without thinking to many tasks - eg. using the table or my other arm to support my arm in eating, drinking, putting make up on and brushing my hair. Yasmin and Peter now have to help tie my hair up for me!

Peter–interview outcome

A great interview this afternoon and my presentation went really well.  The panel have already made their decision and given me a call.  I was told that I couldn’t have done anymore in the interview but unfortunately I was pipped to the post.  Whatever the outcome an exciting new chapter opens in the story of Norwich Youth for Christ!

Peter

On the 1st January 2012 the NHS Trust that I work for merged with another organisation.  Through this merger the Trust needed to make 100 posts redundant within corporate service departments in order to meet cost savings as part of the benefits identified.  The process was that staff in corporate service departments had the opportunity to be interviewed for three positions.  The short story being that I was unsuccessful in all three interviews and requesting redundancy was actually my preferred option to resolve the situation.  I have been using up my annual leave since 9th March and my contract end date is 31st March.

The prospect of being made redundant in the current climate is not one most people would relish but we trust in a God who provides for all our needs.  The Bible says;

And my God will supply every need of yours according to his riches in glory in Christ Jesus. (Philippians 4:19 ESV)

In January I was prayed for prophetically regarding my job situation and told that there was to be “a change of direction to a point of reverse”.  Well that has certainly come true, there’s no greater reverse to having a job than not having a job! 

I have already applied for another job, which is also a change of direction!  The closing date for applications was March 26th and I’m pleased to say that I have been shortlisted for an interview which is taking place on Monday 2nd April at 2.30pm in Norwich.  I would very much appreciate your prayers for this interview which is for the position of Director for Norwich Youth for Christ.  The interview is expected to take 2 hours, at the beginning of which I have to deliver a 15 minute presentation.

Youth Weekend Away

We have just returned from an amazing weekend at Letton Hall - along with 130 other young people and leaders from our family of churches within Norfolk.  The theme for the weekend was 'Seek First His Kingdom' and we had some superb encounters with God during the different meetings.  There were also seminars which included relationships, friends, life decisions, power, loneliness and advancing the kingdom. 

Peter was overseeing the meetings for years 7 to 9's, led the 'Advancing the Kingdom' seminar and together we were on the panel for the 'Kingdom Relationships' seminar.

The weather was fantastic and we spent Saturday morning playing team games outdoors and wizzing around Letton Hall's go-kart track.  As team leader I was keen to join in and was still able to do some activities but a little frustrated at not being able to do others. I also discovered that loose gravel (between venues) is not good for walking on when you have little control over your foot/leg muscles and slipped over a couple of times! 

It was a privilege to be able to speak into these young people's lives and encourage them in their walk with God.

An Update on Owain

Yesterday Owain had a six monthly check up with his Oncology Consultant from Addenbrooke’s Hospital.  Fortunately the appointment was at the Norfolk & Norwich Hospital and we were saved a trip to Cambridge.  The main topic of conversation seemed to be the fact that Owain is currently doing two of his GCSE options in Year 9.  Apart from that his health seems to be all okay and the consultant is happy with his progress, especially the rate he is growing!  The appointment marked three years since Owain was given the all clear from his cancer.

On Saturday 10th March Owain attended the CLIC Sargent Children’s and Young People Advisory Group in Birmingham.  The purpose of the group is to help CLIC Sargent get feedback from youngsters who have been through treatment for cancer in order to help improve facilities and support for those that have to unfortunately go through it in the future.  Owain has served on the group for the past two years and, along with a number of others, this was his last meeting.  He was presented with a certificate of thanks and a goodie bag at the end of the day.

We have just returned from Owain’s Year 9 Parents Evening at Aylsham High School.  Attempting GCSE’s in year 9 is a bit of a struggle for Owain (well he is the youngest in his year with his birthday being 31st August) but his teachers are very pleased with his effort and behaviour in class.  His form tutor, who has been with Owain since he returned to school shortly after finishing his treatment, is very proud in the way he has continued to grow in confidence.  We are obviously delighted with his attitude, effort and the support he is receiving from Aylsham High School.

This Past Week

On Monday I realised it's a good job that I don't do too much writing on the whiteboard in Nursery.  When I tried  I could only do it with my left hand supporting my right arm to reach up onto the board!

On Tuesday I reached a target that I had set myself this week.  I went swimming and managed 2 lengths of front crawl in a row, twice!  However I do find that after going swimming I am then quite exhausted for the rest of Tuesday and Wednesday.

I have been trying to do my physiotherapy exercises each day - some are easier than others. One is to shrug my shoulders up and down which I hadn't even realised would be affected. I can do it but my shoulders don't get too near my ears anymore!

Yesterday I was in Norwich for "Visions" with about 350 other ladies. We had a great time of worship and then Wendy Virgo was speaking on the crippled bent over woman who Jesus healed. (Luke 13)  Wendy shared how we are all 'out of alignment' in some way perhaps physically, emotionally or in our thinking but Jesus is our plumb-line and he can straighten us out!

Have had a lovely Mother's Day today! Our youth group GLU led the service at church this morning.  Owain and Hannah made cupcakes for all the ladies in the church.  I was then taken out to lunch at The Market Place Restaurant in the centre of Aylsham for lunch - very yummy! 

Yasmin

Time flies when you’re having fun, or so the saying goes.  The wisdom of other parents who are all too quick in telling you that time will soon pass by and before you know it your babies will soon be grown up and leaving home.  A nice sentiment but my baby girl is just that, a baby, or was!

In my naivety I sit here today wondering where the past fifteen years have gone?  The advice of those older and wiser than me was correct.  My baby girl is no longer that, but all too quickly she is now a young lady.

Psalm 127 reminds us that “children are a heritage from the Lord” and therefore God’s gift to us.  When grown up and standing alongside their parents “the children of one’s youth” ought to be such a blessing, and Sue and I can honestly say that this is true with both Yasmin and Owain.  I thank God for giving us this beautiful young lady that stands before me today, truly a gift.

Happy Birthday Yasmin – 15 today!

Physiotherapy Appointment

I finally saw a physiotherapist at Colman Hospital in Norwich today.

She did lots of tests with me to get a baseline assessment of where I am with strength and mobility at the moment. I was encouraged by the fact I could manage all the tasks in the 'balance' assessment, and most of them pretty well too!  I had to walk as far as I could in 6 minutes which was quite hard work (probably because I was trying to get a good score!) and caused the same pain in my foot as  swimming breast stroke does. The physiotherapist is going to ask my consultant about this as she can't understand why I'm getting pain in this part of my foot.

She is giving me some basic exercises/stretches to do, to help maintain my joint mobility and muscle strength and we'll see how that goes. I can call/ask for appointments whenever I feel I need help as I am part of their care system now. I'm also hopefully going to see an OT to help with my general day to day needs too.

Sue - the story so far....

The last time I ran was the Race for Life in May 2010 with Yasmin. I struggled then to run the 5km and had to walk a bit but thought my legs were just unfit! We played rounders a few weeks later at Youth Cell and after a great hit I went to run and my right leg just didn't work much to the amusement of everyone watching and shouting 'run'!



Sue - on the ferry to the Isle of Wight (Feb 2012)

I didn't really do much about it for a while after that and then started teaching fulltime in October so didn't have time for too much exercise anyway! When I was doing PE with my class I noticed my arms were getting weaker but again thought it was just lack of exercise and didn't relate this to my leg at all.

Eventually in February 2011 as my leg was becoming more noticeable, I went to the doctors who couldn't explain it, and, after a bit of confusion I got refererred to a physio in May 2011. She, knowing my active background, couldn't explain it either so I was then referred to the neurologist at the Norfolk and Norwich Hospital in July 2011. To my surprise almost as soon as I got into my appointment the consultant wasn't interested in my leg, but my arms, shoulders and face! He and his colleague immediately suspected it was Facioscapulohumeral muscular dystrophy (FSHD). I was sent straight down to another department for genetic blood test. The results of which eventually can through in November and confirmed that I do have FSHD.

So, I can no longer run, I can walk but unevenly and hills are very hard work. I can still ride my bike although again hills are a bit of a challenge - one good thing about living in relatively flat Norfolk! I also have the challenge of getting on and off with a cross bar and intend to get a ladies bike soon but I love my bike which I've been riding for the last 14 years!

Genetics Appointment

Today I went with my Mum to a genetics appointment at the Norfolk and Norwich University Hospital to meet with a genetics consultant from Addenbrooke's Hospital

He was very interested in the various different conditions in our wider family. Having found out all about our family tree he does think that my condition may start with me (a 10-30% chance) and not necessarily be inherited.  Mum and Dad have been offered the genetic blood test so that we will know for sure and then know who else in the family may be affected.

Like the other doctors I've seen, he was keen to reassure me that the quite rapid weakening of my muscles over the past 18 months will not necessarily continue and should plateau out, at least for a while.

I am currently still waiting to see a physio since being referred to the Colman Hospaital in Norwich. This was supposed to happen following my appointment with the consultant there at the start of January but I am now chasing this up having heard nothing and would like to know the best exercises I can do to maintain the muscle strength I do still have!

The good and the not so good!

So today started well. I could reach to defrost our deep freezer and I managed to peg out the washing by bringing the line down low before propping it up. Hanging out the washing is one of my favourite household jobs and I'm glad I can still do it - just!

Then the not so good. I now can't take clothes off over my head by myself unless I lay on the bed and wriggle from side to side! So the dilemma of going swimming was what can I wear that I can take off by myself? I found a shirt and cardigan, so ok.

Swimming has always been easy for me and now it is not. My foot hurts when I try and flex my right foot to swim breast stroke and my arms fail me after half a length of front crawl (in reach and strength). I have been trying to swim once a week and make myself do 20 lengths but it is very hard work. Then I got to the shower with my shampoo and remembered I can't reach to wash my hair in the shower and normally prop my arm up on the side of the bath to do it. Anyone who knows North Walsham Victory Pool will know that the showers are fully on display at the side of the pool - great!!

So feeling quite down as I walked out to the car but it's a beautiful day and I looked up at the sky but I forgot to lift my right foot and tripped over in the car park...aaagh!

Welcome to the "Atthill Life" Blog!

As many of our friends and family are aware we previously had a blog called “Owain’s Journey”. The purpose of that blog was to keep everyone informed of Owain’s progress and treatment during his battle with cancer. He was given the all clear back in 2009 and during all the regular check up’s since everything has been ok.

The main purpose in starting this new blog is to keep you informed of a new challenge in the Atthill household. In November 2011 Sue received confirmation that she has FSHD which is a form of muscular dystrophy. Again we are privileged to be surrounded by friends and family that want to know how things are and how Sue is coping; well this is for you so that we can update you more regularly.

We’ve called this blog “Atthill Life” as from time to time we will give you updates on the rest of the family as well.

So, sit back, hold on tight and enjoy Atthill Life with us…