After a frustrating few years of being referred to various consultants and services, and being rejected ( sometimes before even being seen) my mother stumbled across The University College London Hospitals. I asked my GP for a referral to the centre in London, which she was very supportive of. Initially the referral came through for February next year, then I received a letter inviting me to go in November. I rang to check which appointment was the final one. To then be invited to attend as early as the following week! Unfortunately as it is nearly a 220 mile trip there from where I live I asked for one later in July.
The week before the appointment sped by and suddenly, my dad, myself and my husband were leaving for London!
The drive was long and we checked into the hotel for the night. We then travelled into Covent Garden- the reality of my disability was even more pronounced when travelling on the underground. The escalators move so quickly ( as do the people and the train barriers) that I struggled and needed the help and support of my husband and father in being able to navigate ( my navigational skills have dramatically deteriorated in the last few years) and balance and move with enough speed to keep safe and out of others way.
My confidence over the past few years has seriously taken a huge knock. I do not like to go places alone and will generally ask someone close to me to come with me so that in case i fall they can help etc
The next morning we had some time to waste so enjoyed various coffee stops as we walked towards the hospital from our hotel. It was only a 20 minute walk for my husband however it took me a while as my legs were already hurting.
We went to the hospital ( the plan being my dad would come with me into the appointment and my husband would wait outside.) and my first impression was that this was to be a general physiotherapy consultation. The experience far exceeded any set expectation that I may have had!
We met with Dr. Sara Simeoni, a gentle and softly spoken consultant who I instantly warmed to.
Dr Simeoni is consultant neurologist who specialises in spasticity and uro- neurology.
I also met with an occupational therapist, a physiotherapist and nurse.
They all attended to me as a team and it was the most listened to I have ever felt in a consultation. They all listened and knowing that they understood allowed me to feel I could open up to them all fully. We discussed my anxieties, my worries, my early aging concerns, my abilities and lack of confidence etc.
We spoke in detail the treatments that I had tried to have done and the fact that age 12 I threw my afos (splints in my day!) away!
They all asked pertinent questions and as stated made me feel that my experience and opinion mattered.
What made me feel even more reassured was when they agreed that I did not need Botox or baclofen as my spasticity is (whilst severe when walking etc) it would have a more detrimental effect as it could make my muscles weaker and therefore lead to further problems down the line.
We then discussed what treatment, physio etc that I already do and we talked about my use of Tens and the effect that is already having on me.
They did a full Physical assessment and assessed my spasticity levels etc and were extremely impressed with my plantar dorsiflexion
Dorsum (superior surface): Dorsiflexion is the lifting of the front of the foot so that the top of the foot moves toward the anterior leg. Plantar surface (sole): Plantar flexion is the lifting of the heel of the foot from the ground or pointing the toes downward
I then had to complete various catwalks :P and showed off my walking style.
We discussed my attending a zoom fatigue clinic, continuing with my gym sessions, swimming, weight loss and use of Fes!!
They tested it straight away on my right foot ( I would have a bilateral system placed on my body but in order to see the difference straight away they only placed it on my right ) the difference was noticeable straight away! My knee stopped buckling, my body straightened, I wasn't thudding my foot onto the floor and my foot walked in a straight line. My toes were not hurting and the tightness was gone. I felt as though a miracle had occurred.
I will be referred to a centre near to my home for the FES system to be given and monitored but been assured that if they cannot or will not give me the system I will never be discharged from the London hospital and so can just email them and they will sort it all for me and I can just attend there.
I walked away and cried. I cried tears of joy, my dad cried and we said how wonderful the centre was and that I felt as though there was hope.
Its still a long road for me to travel and a lot of hard work. particularly with regards to being able to travel independently ( though I may need to accept that that part of my life is over)
I will hopefully reduce pain, learn to manage the fatigue that I have been fighting and showing my girls my catwalk
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