Sandra's Miracle

Walking again at 62

 

Sandra, pictured with David, enjoying their holiday on a boat in Antarctica in January 2010 – before her DBS surgery. She felt like everyone else: there was limited walking and when going ashore, everyone was trudging through the snow so she didn’t feel self-conscious.

 

Sandra Orton, 62, from Norfolk has had Dystonia (a neurological condition affecting movement and muscles resulting in twisting body motions, tremor or abnormal posture) since she was a teenager. She had given up all hope of things improving, until she heard of Deep Brain Stimulation. Sandra underwent the procedure in April 2011 and here looks back at her earlier life and how it has been transformed so miraculously.

From my teenage years

It all started when I was 16. My left foot would suddenly shoot out to the left as I was walking along. Then after a short illness when I was 21, I couldn’t lift my foot at all but the doctor said: “There’s nothing wrong with you. It’s all in your mind.” I had to find other ways to get along.

 

It was only when I moved to Norfolk in my mid 30s that I saw a neurologist. He gave me an instant diagnosis: “My dear, it’s not in your mind, it’s in your brain. You’ve got Dystonia.” It was such a relief to know that I had a condition with a name. I took tablets for a while but the side effects outweighed any slight improvement in my walking.

 

I used to watch The Bill on TV and in particular the two pairs of policemen’s feet walking as the credits rolled. I used to think how easy it should be to just put one foot in front of the other but for me it was so difficult – literally like picking up each foot to do each step. Walking any distance at all was exhausting.

 

I tried to conceal my limp with a skipping motion. I would sometimes catch my reflection in a shop window and be horrified by what I saw. I was extremely self-conscious and embarrassed and lacked confidence. I felt people were staring at me and I made excuses not to walk with anyone.

 

As time went on, my walking got gradually worse until I eventually needed a stick. I had accepted that I could not walk properly – I knew people who were far worse off than me so who was I to complain?

 

A revolutionary treatment

During a routine visit, my neurologist referred me for Deep Brain Stimulation (DBS) and I went to Queen Square in London where tests confirmed that I was suitable. I underwent the operation thinking that even a 20% improvement in my condition would be a help.

 

I went into hospital in April 2011 on the Sunday, put the walking stick in the boot of the car, had the operation on the Tuesday and walked out – yes, walked out! – on the Thursday. I’ve never used the stick again. Even now my partner David and I become emotional when we talk to people about the result. It is just amazing!

 

The improvement I feel in my walking is beyond my wildest expectations: it’s actually 95%! David says: “I thought Sandra would just find walking a little easier but the transformation has been phenomenal. She’s now the one dragging me out of the house to go walking!”

 

A complete transformation

Sandra continues “For a while after the operation, I would wake up in the morning and wonder if my leg was still going to be all right that day.

 

I can now walk into town to the market, to the bank or library. The first time I went down the road after my DBS surgery, a neighbour who drove past and saw me left an answer-phone message: she couldn’t believe her eyes! And it’s the same reaction whenever I see people who knew me before.

 

In May I bought a pair of open-toed summer shoes. When I showed them to David I burst into tears because Dystonia had denied me that small pleasure for so long. As well as having an unsteady gait, I used to regularly fall over. My toes would fold onto themselves and make me topple forward. I never walked in open-toed shoes because sooner or later, the sole would curl under and I would be in agony. I seldom wore dresses because I didn’t have the right shoes.

 

I have become evangelical about DBS. One day, a lady who was sitting on a bench commented on my footwear. I responded jubilantly “I haven’t walked properly in 40 years! I have just had this operation!” and told her all about it.

 

Then this summer we went to Northumberland on our first ever walking holiday. One day we even did 13 miles. That was totally impossible before. When you go on walks it opens up what you see: there is so much wildlife and wonderful scenery. I missed that for all of my adult life… until now.

 

Sandra and David went on their first walking holiday in Northumberland in July 2011

Christmas 2011 is just around the corner

Our Christmas this year will be quiet because we are going on holiday shortly afterwards. We will go to church for the morning service, then maybe have drinks with friends before picking up David’s mother who is 98. We will have a traditional lunch together and I will serve one of my specialties: a Christmas roulade (see recipe).

 

On 27 December David and I are off to New Zealand. We have hired a campervan to travel around and plan to do a lot of walking too. I am really looking forward to it this time – with excitement, not trepidation.

 

What next for Sandra?

My life has been transformed and it’s miraculous. It’s not quite like in the Bible – getting up from a deathbed and walking – but almost.

 

I am lucky that DBS is now available to Dystonia patients and people with other forms of tremor as well as Parkinson’s. I understand that DBS is now being tested for treating Dementia, Epilepsy, Cluster Headaches, Tourette Syndrome, Obsessive Compulsive Disorder and even Major Depression. With further research, who knows what might be possible in the future?

 

To help Brain Research Trust create more “miracles” like Sandra’s, please donate.

Read Matt’s story to find out how DBS has transformed his life and helped with his Parkinson’s symptoms.

 

Sandra’s Christmas Roulade

4 eggs separated

4oz caster sugar

8oz mincemeat

2oz self-raising flour

1/4pt whipped cream

 

1. Whisk egg yolks and sugar until thick.

2. Fold in mincemeat, then flour.

3. Beat egg whites and fold in.

4. Pour mixture into Swiss roll tin and bake for 12 minutes at 190°C or gas mark 5.

5. Fill and decorate roulade with cream.

 

Deep Brain Stimulation: key facts:

·A thin insulated electrode is placed into the brain. It is connected via an extension lead to a small neurostimulator (like a pacemaker) implanted under the skin in the chest.

·The neurostimulator is programmed to produce electric impulses which are sent to the brain to stop or reduce the electrical signals that cause movement disorders.

·Introduced to Queen Square, London in the late 1990s thanks to Brain Research Trust funding.