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Spinal Muscular Atrophy

My Story

My name is Phil Simmonds.

Day at Gretnagreen Me and four daughters at a wedding

 I'm the one with the trousers                                    I'm the one with the grey hair!!

 

 

Me and the wifeOur five children

The wife and I at a wedding 2005                                           Our five children

 

This is my story

 

I have SMA Type111, I was diagnosed when I was 27 years old.

 

I am now 56. I first noticed there was something wrong when I was at primary school, But things got a lot worse when I became a teenager, falling a lot, making excuses all the time, saying I tripped over something or other, you know how it is!!! Then the time came to leave school, I left at 15 yrs of age, at 3.45pm 3.55pm I was in work, my father had his own Coal delivery business.

 

Then my problems began. I noticed that I could not climb high steps with a bag of coal on my back as easily as the other boys, but I plodded on saying to my self that my strengh would come as I got older, but my optimism never materialised. So I just got on with my working life as best as I could, but the falls became more frequent, again making up all the excuses under the sun, but still I carried on trying to hide my problems from everyone, but what no one realised was, that every day I worked seemed like a weeks work to me!!! but still I kept persevering, never getting any stronger.

 

Then the time came for me to take my driving test, I took the test in a coal lorry and passed first time I hasten to add!!. The years passed but I was still there working as hard as I could, having the falls, more excuses!! how I never broke any bones when I was carrying a bag of coal I'll never know!!! but I made up for it later on in life, breaking my legs at least six times in as many years.

 

More years passed, still carrying coal, then my father had to give up the coal business, so I had look for a new job, so what did I do, I started working for another coal merchant, I must have been a glutton for punishment!!!! The time came when this type of work got too much for me, so I started looking for other employment. I got a job in no time at all, easier to get a job in the 60 /70's. I started working for the Western Welsh bus company, a lot easier than the carrying coal I must say! I thought I was in heaven!!

 

Yes another year has passed 57 now, don't time fly when you're having fun!!

I now have to use a powererd wheelchair all the time, but it  gives you a lot more independance.

As I said earlier I use a wheelchair every day now, the wheelchair use is an Invacare spectra plus with seat raising facility that helps me to have a little stand for a few minutes, gets the blood down to my boots

 

I don't let being in a wheelchair stop me from doing things that I loved,  I still like doing a bit of woodwork as a hobby, I also like doing a bit of wood turning, very theraputic I find!!

I've recently had my bathroom altered, I had a DFG/ Disability Facility Grant, It's made life so much easier, especially for my wife, no more lifting for her.

 

I would like to take this opportunity, to say how helpful and considerate the DFG dept were especially, MR Ian Parry from the DFG dept, also the building contractor, MR Alun Quinn and his team of men who worked on the shower room.

 

A couple more years has passed, 59 this year!  spent a lot of time in hospital over the last couple of years, broke my leg again in Sept 07 9th time no less!! I was in plaster for 14 weeks, oooh the agony!!  i'll never get used to the pain.

Breaking my leg this time has really hit  my confidence for six, unable to stand now, but will keep on fighting.

 

Having more work done to the house having a over head hoist fitted to my bedroom, never thought it would come to that!!

 

Going in for a new vehicle this year, one that has a automatic door and lift so i can drive straight in with my wheelchair, I had to go for a driving assessment at Rookwood Hospital Cardiff, a bit worrying but I passed with flying colours.

The VW Caravelle i've opted for ,beautiful vehicle!!! hopefully it will be ready in about 16 weeks,can't wait!!

 

Thinking of getting a wheelchair with standing fascility , so i will be able to stand.

There's more to come!!

 

Another year nearly gone, attended the JTSMA Christmas party with my wife at the Miramar Hotel at bournemouth last Sunday 30th November 08 had a great time, wonderful food, all the children had a great time and  loved the magician and FATHER CHRISTMAS, I did'nt get to sit on his lap though!!!!! it was lovely to see the look on the kids faces as SANTA arrived.

 

It was lovely to meet the some of the staff of the J T as opposed to just talking over the phone, I now have a face to put to the person I am speaking to over the phone.

 

Got to go now,  got to do the washing, ironing, washing up, us men got a hard life!!!!!!!!!!!!!!!!!!!!!

 Theres more to come!!

 

Finally got my VW Caravelle on  Dec16th 08. What a vehicle!!!  it gives so much more independance---I love it I hope to do a lot of travelling this year!!

 

I had the Caravelle through GM coachwork in Devon, they were so helpful and understanding I would highly recomend GMC for all adaptations to any vehicle.

 

 

 

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The story of a man diagnosed with Type III Spinal Muscular Atrophy

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