My Story

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I am 52 years old and was diagnosed with Hereditary Spastic Paraplegia (HSP) when I was 36.  HSP is a progressive neurological condition caused by the inheritance of a faulty gene from an affected parent. My onset of this condition occurred in my late twenties/early thirties.  I am only affected from the waist down although fatigue is a major issue in daily life.  For at least seven years prior to my diagnosis I was having mobility problems and had been told I was arthritic.

Up until this time I had enjoyed participating in many sporting activities, particularly cycling, running and swimming.  One of the first problems I had noticed was intense hip/pelvis pain the day after I had run a significant distance.  In hindsight I can now put this down to the way my body naturally compensated for my gait problems.  Other problems I experienced at this time were difficulty walking down slopes and steps and the total inability to walk in flip flops without tripping over.

Today my stiffness and spasticity has considerably worsened making walking without aids almost impossible.  I walk with a severely swinging gait and I hyperextend every step. I have dropped feet that are inverted, particularly on the left hand side.  However, I try to keep as active as I can as I strongly believe this slows progression and I happily use any aids that make my life easier.  These aids include a mobility scooter, AFO’s, Functional Electrical Stimulation and a wheelchair.  I have hand rails around my house and I use a four wheeled rollator in my garden.  My house has been modified so that it is all level access and I have a wet room.  Getting in and out of a bath would now be nearly impossible and extremely hazardous.

My day begins by getting out of bed and dressed.  I can still manage to do this independently but only just.  The hardest part is putting socks and shoes on and stepping into underwear and trousers.  When I’m sat on the edge of the bed with my legs extended in front of me I can hardly lift them of the floor.  I have recently purchased a long metal shoe horn to help me put my footwear on.

When I’m eventually up and dressed, my days activities begin.  The first few steps after any period of rest are always the hardest because of extra stiffness which reduces marginally with activity.  During these first steps my legs can give way and I collapse to the ground.  I suffer with backache which is the result of my gait and this also tends to be worse following periods of inactivity.  For this reason I make a conscious effort to try to not sit for more than an hour.  In my house I tend to walk without crutches, using handrails and furniture for stability, but I often trip and occasionally fall.  My stiffness is exaggerated when I’m cold and stepping outside when the temperature is below freezing causes me to almost seize up, making walking almost impossible.

I’m affected by clonus when my feet are in certain positions and although I don’t tend to get leg spasms, sometimes at night when I stretch in bed, my legs get the shakes and I often suffer with cramp as a consequence.

I do stretches and exercises to help maintain my mobility and I try to do 30 minutes gardening every day for the same reason.

I endeavour to be as independent as possible but I’m lucky to have a supportive family and friends who are keen to assist when required.

Daily life is a constant struggle with my mobility problems but I’m determined to do all I can to lead as full a life as possible.