Stuart

Posted - June 2011 in Community Members

Stuart

My Name’s Stuart, I’m 36, and live with my wife, Ebony, and our three boys, Rob, Ed & Cameron, on our 35 acre property in west Gippsland. For the last several years we have been rearing dairy calves, building a herd to milk. I also work as a rep for a Stockfeed company, while Eb manages the kids and runs a cunsultancy business for agricultural chemical companies.

I was diagnosed with HSP several years ago, and while my mobility is obviously declining, it’s doing so at a slow rate. For the last 24 months I’ve been using a walking stick, and am confident that my HSP doesn’t stop me doing anything, it just slows me down, as I just have to think about what I’m about to do.

I’d love to meet other people with HSP and would really encourage anyone to contact me through the society to catch up. Also, anyone interested in an informal gathering somewhere in or near Melbourne please let me know, as I’d really like to get a few of us together.

Stuart & kids

Comments on this story

angela posted at 5:08 pm on 3 September 2011Reply

Hi Stuart, enjoyed reading your story, I was wondering what are AFO’s? Also you must be in good condition if you can run after two little boys!! I am 60 and was only diagnosed 21 months ago. I have been going quite ok until I had a trip 6 weeks ago and broke my arm, that has put me back, I have now to get my confidence going again and get back to gym etc because I feel with this condition keeping out mobility going is the main thing. Bye for now, Angela
- Editor posted at 6:09 pm on 3 September 2011Reply
  
  Ed. Note: AFO stands for ankle-foot orthosis (or orthotic). http://en.wikipedia.org/wiki/Orthotics
Sue posted at 7:35 pm on 3 September 2011Reply

Hi Stuart, just wondering at what age did you first notice signs of hsp? How was it diagnosed? How are things for you now?
- Stuart posted at 7:26 pm on 4 September 2011Reply
  
  Hey Sue, I fist noticed that I had a funny walk when I was about 14, then started to notice all the comments ‘what happened to your legs?’. After I got married my wife forced me to see someone about it, and after seeing a long string of specialists I saw a neurologist who sent me to have a gait analysis, then he told me it was HSP. I was about 30/31 years old. At the moment I can feel it getting worse, especially when I haven’t done any excersize. I have started using a walking stick sometimes as well.
Bev posted at 11:00 am on 4 September 2011Reply

Hi Stuart,
Nice to put a face to a name. As you know I was diagnosed in 2005 and have been only midly affected. I stretch twice a day (most days.) I find if I use the exercise bike too much it causes a burning pain in my lower right leg (the one that I have more problems with.) As Michael J Fox said “I didn’t choose this disease, but I can choose how to deal with it.”
Staying positive is very important. Take care, Bev.
Stuart posted at 7:30 pm on 4 September 2011Reply

…I agree, I thought a little while ago that I have to stay positive otherwise I’ll just fall apart! Look forward to meeting you at some stage!
Stu
Therese posted at 11:06 am on 9 September 2011Reply

Hi Stuart

So pleased to see you are so positive and definitely not letting HSP get in the way of your dreams.
Nice also to put a face to a name, I was the one who initially talked to your lovely wife…….take care and keep doing what you’re doing….and check out our new Facebook site, definitely a place to chat. Cheers trees
Elizabeth posted at 8:30 pm on 25 September 2011Reply

Hello Everyone,
I have not gone to this page before but feeling quite desperate.

My partner aged 64 has FSP – diagnosed 25 years ago.
He can still walk with great difficulty using a staff. He is starting to fall. He has a gopher. I push him in a wheelchair when needed.
He has never been into exercise but doing a little now. Has tried Botox to no avail.
So my problem is how to be his “walking feet” and carer. I am finding it all very difficult and feel quite alone.
There are always lots of stories from the ‘sufferers’ but not the carers.
The gap between us seems to be widening because there is so much that we cannot do together anymore.
That’s all really now.
lizzie
Alison posted at 1:40 am on 22 October 2011Reply

Hi Lizzie, Your post moved me to tears. I’m 46 and have had SP for 22 years. I spend most of my time in my wheelchair and can only walk a few yards. My last bout of Botox put me in the chair really! I agree that carers’ stories are few and far between. There is a great “Do’ and Don’ts for friends” article at http://sp-foundation.org/content/community/tips-friends.html which a woman with MS wrote. Don’t let that gap between you get wider. Keep the lines of communication flowing. You sound a wonderful caring person. I’ve been with my partner 3 years and since my swift decline in the last 6 months, he seems unable to cope. He is snappy, unsupportive, moans about me not hoovering the house, says all the mobility aids make his house look like a care home and that I am a “poor old tool”! Like you, I’m finding this heartbreaking and daren’t tell anyone. I never expected this from the man who said that when I left my husband for him he would treat me like a princess! Keep caring Lizzie. Your partner is blessed to have you x
Editor posted at 8:17 am on 22 October 2011Reply

Ed. Note: Thanks for the link to the article on the SP Foundation website Alison. There is also an article on Coping & Caring in the Living with HSP section on the homepage. http://www.hspersunite.org.au/coping-caring/
Frank posted at 4:42 pm on 9 December 2011Reply

posted 9/12/2011
hi Stuart, my name is Frank. I was diagnosed 15 years ago. I’m 56 years old, left work two years ago and handed in my driver’s licence. I can understand how you feel. I’m a believer they will find a cure for hsp in the near future, so stay positive.
Jenny posted at 8:25 pm on 13 May 2012Reply

Hi Stuart, I am in Western Austalia and am very new to this site but not to SP. I have just been given some AFO’s to help me stabilise my walking and the orthotist is trying to find a better shoe for them to sit in as my toe clawing is worse due to sharing the shoe with the AFO base. I have found that since having the AFO my walking is much more stable when I am in them but even after wearing them for only a week I found that my walking without them (in bare feet especially) is much worse. Did you find this as well?

take care and thanks for your profile info – helps to read similar stories to my own.
Stuart posted at 7:58 am on 17 May 2012Reply

Hi Jenny, yeah I have found they take a bit of getting used to. I use a walking stick to help me keep upright as well most of the time. It takes a fair bit of pressure off the feet and it helps getting around a lot.
Julie posted at 2:00 am on 5 December 2014Reply

Hi Stuart
Jenny in her comment to you mentioned AFOs. What are these please?
Editor posted at 9:45 am on 5 December 2014Reply

Editor’s Note: AFO stands for ankle-foot orthosis, which is an externally applied brace.