Summer 2013

We are coming to the end of the summer and I realised, and was reminded, that I haven't blogged for ages!

It has been great having the independence of driving wherever I need to or want to again, especially during the summer holidays. We have been able to visit family and friends without having to plan for Peter to drop us off and find time around work. I am now driving without thinking with my hands, if you know what I mean!

We had a great week at Newday camp at the Norfolk Showground with our youth group from church. I managed the camping - the airbed was actually really comfortable to sleep on but  I could not move/climb on it or get off it without Peter's help. We decided to hire a wheelchair for the week to save my energy for walking around the site. This made a massive difference in time and energy saved, but mentally it took some adjusting to!

Another highlight of the summer was our nephew Joshua's wedding to Nikki. It was a great family day celebrating with them and I managed to wear my heels too! Actually heels are really good at holding my foot in place so walking is as ok as it normally is, it's just further to fall if I lose my balance. My general balance is still quite good but my inability to step backwards to maintain balance is my biggest problem hence I have spent quite a bit of the summer falling back onto my bottom and being pulled back up by whichever family member is around!

I have been clearing out the cupboard in the spare room this week and came across lots of old photos. Here are a couple of things I used to be able to do when my muscles worked!! (Ok and it was nearly 20 years ago too...!)

 

 

 

 

 

 

 

 

 

 

One sport I discovered I can still do is putting. On a visit to Southwold I beat the rest of my family!

 

 

 

 

 

 

Yasmin got her GCSE results last week, and Owain got some for this year too.  They both did really well and as very proud parents we took them to Harry Potter Studios for a surprise trip to celebrate the next day!

Driving

Sue’s car was ready to be collected this morning after being adapted for hand controls.  The controls are an accelerator ring on the steering wheel and a lever for the brake.

Sue successfully drove it back from Dereham to Aylsham, the furthest she’s driven since before Easter! 

Independence!

Yet again sorry for not updating sooner - I always say to Peter I have nothing interesting to say but he tells me people like to know!

Last week I regained some of my independence as far as showering/bathing goes. Since Easter time Peter has been helping me in and out of the bath/shower, but this week I had rails fitted. This was following a visit and assessment by a Social Care OT at the beginning of May. We now have a rail/bar at the front door, in the downstairs cloakroom and over the bath. I also have a bar thing attached to my side of bed which is great for helping me turn over and sit up too.

I haven’t been able to drive out of Aylsham for the past couple of months, but we have finally bought an automatic car!  It is currently sitting on our drive waiting to go to a garage in Dereham to be adapted for hand controls, once the parts have arrived from Italy! I have received confirmation from Access to Work that they will cover the cost of the adaptation which is great news.  I’m looking forward to being able to drive further afield once more.

We have enjoyed a bank holiday weekend with family and friends visiting and I even managed a 2 mile walk around Sheringham Park (with a lot of help and rests on the way back up!) .

Muscle Tests

So I saw my Physio for muscle tests and she was comparing the results with the tests she did last March. As I thought all the muscles in the back of my legs and bottom have got worse. The muscles in the front of my legs are still doing okay and my arms are not much different, just a bit more weakness in my shoulders.

One of the knock-on effects of this deterioration in my hamstrings etc is difficulty in getting on and getting going on my bike. I need to sit on and get my right foot in place and I used to be able to scoot then with my left leg to get going and then put my left foot on the pedal. Now I have less strength to scoot with my left leg but am also unable to pull my left leg back and onto the pedal. Once I'm going I can still ride but definitely need help to get going.

We went to stay with my sister and family for Easter weekend and had a lovely time together. On Saturday we went to Stanwick Lakes. I was able to join in on my bike once Peter had got me going! I did also need a bit of a push up anything more than a gentle slope.

The search for a car is ongoing and it is looking likely that I will be able to get support through Access to Work to help with the cost of adaptation.

I am now on a waiting list for an assessment at home from the Social Care Occupational Therapists - hopefully it will be quite soon as I do now need help to get out of the bath.

Today I plan to find some new shoes to wear with my splint!

Update

So recently things have definitely been getting more difficult for me.  Just before half term I was unwell with a fluey thing followed by sinusitis and didn't really do anything other than sleep and sit for 10 days! Since then getting back to doing even normal things like walking has been noticeably harder.  I have been swimming and doing hydrotherapy each week since but again the legs aren't working as well as they were.

Last week I met with my Neuromuscular Care Advisor who is great for talking things through with and works with lots of other people with FSHD too. We discussed lots of things that may help me now and other things that I may need to consider in the future.

I am wearing my splint most days which is definitely helping me not to trip over. I still need to go shoe shopping as I don't really have the ideal footwear for it to go in as I need to buy a bigger size to accommodate the plate too.

I am waiting to hear from the Social Care Occupational Therapists as I have requested them to come and look at putting a grab rail in the bathroom. My current balancing precariously to get in and out of the bath is probably not going to end well!!

We are planning to start sorting out the car situation over the next few weeks...selling mine, finding a good automatic for adaptation and then having hand controls put in.

Tomorrow I am going to see my physio to see how much my muscles have deteriorated since she last tested them.

Driving

Yesterday Peter drove me down to Thetford to the East Anglian Driveability Centre where I had an assessment of my driving.

This included an assessment of my physical abilities and chatting through my concerns with an Occupational Therapist.  I then had an assessment of my reaction times and strength for braking on a driving rig.

I was then able to go out in an adapted car and try 2 different adaptations - hand controls and a left foot accelerator. Both were really odd to start with - especially trying to brake gently with my left foot after years of pushing the clutch down hard!

They have said that I am okay to continue driving locally until we sort out which option we are going to go down.  The car adaptation only works with automatic cars so now we have decisions to make about which of our current cars to replace and what type of adaptation would be best in the long term.

This week I also got my new carbon fibre splint. As yet I haven't had much chance to try it out so will now need to experiment with what it works well for and which shoes I can use it with.

Belated Happy New Year!

Oops - I hadn't realised how long it had been since I last blogged! Sorry for not keeping you updated. I think I have kind of got used to how my legs and arms are over the last few months and adjusted to life as it is for me at the moment.

In December I had a review meeting with my consultant at Colman Hospital, my Physio and my Neuromuscular Care Advisor. As I said in October, most of my muscle use and strength has been maintained since the previous review with my physio in March, which is great, although my foot drop on my right foot is now much worse. This is my main concern as I now catch my toes a lot leading me to lose balance, stumble and sometimes fall over too.

Carbon Composite
 Matrix Split Toe!

Today I finally had an appointment with Gordon (Orthotist) to look at possibilities for what to wear on my right foot.  I was able to try this carbon fibre device and it really helped me when walking. One of these is now going to be ordered for me.

At my review we also discussed my driving as obviously my right foot is kind of crucial for braking and accelerating and changing between the two. At the moment I feel ok driving but am in the process of booking an appointment at the East Anglian DriveAbility Centre in Thetford for an assessment.

We had a great family Christmas and one of my presents from Peter was a pull along bag on wheels (not quite a suitcase and not quite an old lady shopping trolley either!) for taking my work folders/books to and from school. This is much easier than carrying bags even if it is only from the car and back.

Thank you for all your prayers...would really love to see healing in 2013!