What is Spastic Paraplegia?
Definition. Hereditary spastic paraplegia (HSP), also called familial spastic paraparesis (FSP), refers to a group of inherited disorders that are characterized by progressive weakness and spasticity (stiffness) of the legs. Early in the disease course, there may be mild gait difficulties and stiffness.
My name is Michaela and I have a condition called Spastic Paraplegia. I was diagnosed when I was about 1 and a half. It all started when I had begun walking on my tiptoes (with no frame on my own) and I then began to fall a lot and had a couple of seizures. I was brought to my doctor first and was referred to the Central Remedial Clinic where I was assessed and then officially diagnosed thankfully after a review with the Gait Laboratory's, physiotherapists, and reviews within the CRC.
Gait Laboratory: These are used as a way to review patients that might have a variety of conditions such a Cerebral Palsy in adults and children as well as a variety of conditions. As a part of the process, each child or adult with some walking difficulties is referred to these laboratories as a way to determine what the best treatment plan would be suitable to improve each person's walking ability. Picture this - there's a number of specialists in a room behind a wall looking at computer screens and you're there with your walking frame in shorts and a t-shirt with small electronic pads added to the joints of your knees and the tops of your knees near your pelvis, which are used to allow the specialists to see what your walking style is and how your body moves in certain ways, like walking up and down the lab floor while wearing your splints, insoles, etc...
After this from what I can remember as time went by I was then fitted for my first k-walker and splints and then followed my first pair of glasses and a corrective eyepatch…. I was stunning living my best little miss sunshine life lol.
I was lucky enough to start pre-school in the CRC which I have no bad memories of at all…I mean there were teddy bear picnics and the odd 'Michael Schumacher' visit and just being kids I guess playing and learning between going to physio appointments. I was there until I was about 6 and then transferred to a mainstream school that was closer to where we had moved from Ballymun to Finglas. I then went back to school in the CRC in the summer of 1st class because I had both of my legs wrapped in plaster pares for what was supposed to be for the summer but ended up being nearly 5 months and then two months later my appendix nearly burst so I was out for even longer then but it worked out for the best because when I went back to mainstream school I met my SNA - Special Needs Assistant - for the first time who became one of my best friends and someone I can really depend on even still almost 22 years (give or take a few) <3.
Now at 30 years of age *inner child cries * so much has changed since then I've been through some pretty major ups and downs over the last couple of years. I've learned so much and I'd like to think that I've changed and grown into the person I am today compared to the person I was 5 years ago maybe even 10 years ago...
As to how my disability has been impacted over the years, thankfully it has not deteriorated over the years bar some swelled ankles here and there and weight being harder to lose... I don't think I'm the only disabled person that feels that there are times where just because you know what your abilities are no matter what it is: in this case, it would be when planning to do something and you start to enquire but he answer may be 'No, Not Possible, we are not sure what to do, sorry we cannot help you ' sometimes in the big bad world this can kind of knock your confidence and self-esteem a bit. when you keep getting knocked back when all your trying to do is better yourself and have more stability and structure to your daily life.
I won't lie it is very disheartening to be told that you can't do something or that thing is simply not an option that is available for a disabled person. In my case, it was getting a full-time job - despite the "fear" of something being taken away - medical cards, allowances being cut all because I wanted to add to and improve the quality of life in terms of allowing for more freedoms from a consistent income like experiences, being able to save more, being able to buy the things that you want that will make your life a little bit easier like for me it was my brother’s wedding abroad, a trip to London Harry Potter Studios and most recently my Triride electronic bike attachment *my baby* which has honestly changed my life so much by just allowing me to go further than I would have by bus or even by car.
So for times like this when it can be so frustrating when you are determined to do something that you thought would be straightforward enough but the more that you enquire about it and find out what it takes, this can be the worst feeling because you start to feel like giving up or you start to think if it is actually worth doing and as much as it might seem a bit crap at first please remember that it is always worth trying even if it turns out that you're not interested anymore, at least you tried and now you can really go for what you want with even more fire and motivation to achieve and recieve all of the things that you want. . . Always Try X
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