Posted - December 2014 in Community Members

Donna with husband Colin and granddaughter Aliza

Donna with husband Colin and granddaughter Aliza

My HSP was confirmed in 2013 but it was suspected I had this condition. I am the only one in my family affected by this and have not passed the gene onto my children. I am a married 56 year old woman with three grown children and two grandchildren and work part time in a job I love in a preschool office.

I always loved to walk – bushwalking and walking my dog but I noticed at about age 45 I was becoming increasingly clumsy and was tested for various diseases and had MRIs. I was walking with two dropped feet and having some falls. I have since had tendon transfer surgery on both feet and have had pins in one foot to straighten my foot and to assist with walking. I am now walking with a stick and whilst it is slow going I still do love to walk. To try and maintain muscle strength in my legs I have taken up swimming (1 kilometre twice a week) and pilates – I enjoy these both enormously and could recommend these to anyone for body strengthening.

I find myself always searching for the perfect shoe! I do wear orthotics and favour ASICS but if anyone can share their experiences with a comfy shoe I would love to hear it!

I am independent but am always grateful of the support I receive from my husband. We accept the limitations HSP has put on our lives but there is still so much we can do!

Comments on this story

  1. Ian posted at 10:12 pm on 7 April 2015Reply

    Dear Donna,
    I have been using Toe-OFF orthotics which I find help to prevent tripping

    kind regards


  2. Bob (Florida USA) posted at 9:46 am on 6 May 2015Reply

    Hi, my HSP was confirmed in 2005, my last year of teaching Kindergarten for 39 years. I am the only one in my family with this and have not passed it onto my children or my two grandchildren. I saw a TV show with a man that had some of the same symptoms that I had. This doctor was in Rochester NY who got me into NIH.They did the gene testing and found out that my 48 gene was defective. Dr Blackstone said that I was 1 in 5 in the world with this defective gene. None in the US. I also use shoe goop to make my shoes go longer. God bless

  3. Merron posted at 1:41 pm on 10 May 2016Reply

    Hi Donna, I have found womens Skechers Shape-ups sandshoes work for me. I havent been able to buy them in Australia although there are Skechers stores here. Shoebuy (American) on the internet has been the option for me. They have a ‘rocker’ bottom (sole) which keeps me from kicking my toes into the ground and tripping over. They take a little while to get used to, Im 59 and its 15 years since I have had the HSP diag and more recently I’ve found a walking stick useful. All the best, Merron.

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