PERSONAL STORY OF MUSCLE GSD

THREE COMPOUNDED DIAGNOSES

My name is Carol, I am 72 years old, I live in Stoke-on-Trent and I have McArdle’s. I was diagnosed when I was 28, but did not receive any care or guidance at all until I was about 40. I have found it gratifying to read the stories here of fellow patients and to note both the similarities and the differences experienced by us all.
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Name: Carol Hassall

Country: UK

GSD: McArdle’s (GSD5)

Diagnosed at age: 28

Age at writing: 72

Date: 03/2022

A happy childhood

 

As a child it was very soon apparent to my parents that there was a problem with my health. My childhood was spent in quite a hilly area, consequently I lived with daily leg pains and shortness of breath, struggling to keep pace with others. Nevertheless, I consider my childhood to have been relatively happy and normal. I could do most of the activities that other children did, including roller skating, which I loved!

 

I contracted meningitis

 

At 9 years old I had the misfortune to contract meningitis, an inflammation of the brain which also has muscle rigidity as one symptom. The meningitis has left me with some additional life-long health problems. But there was a plus side! I was immediately excused from Physical Education lessons, which alleviated the problems I had in that class with my as-yet-undiagnosed McArdle disease. My walk through life was somewhat slower than for my school friends, but gave great returns. I was the slowest walker on geology field trips, but consequently I found all the best fossils! Overall I was very well cared for as a child, and I loved my schooldays.

 

Chronic Fatigue Syndrome

 

In my forties I became quite unwell with yet another diagnosis, Chronic Fatigue Syndrome, which really compounded my difficulties. For the following 20 years I had to use a wheelchair when out of the house.

Finally, expert professional help

 

In the late 1990s I was one of the early patients at the embryonic McArdle’s Clinic which Prof. Quinlivan started in Oswestry. Since then I have had excellent help and guidance from the specialist team and stayed with the clinic when it moved to London in 2011. They have helped me to slowly improve my quality of life. I remember surprising Andrew Wakelin, the AGSD-UK McArdle’s Coordinator, when I first walked from the lift to the waiting area, with my husband behind pushing the wheelchair just in case I needed it. Andrew had never seen me walking before!

 

Now on the better days, I can manage to walk short distances with the aid of two sticks. But being in my 70s, I also make use of “Duggie the Luggie”, my small foldable pavement scooter (see photo) which easily fits in the car and makes outings so much safer and more practical.

 

Life has a lot to offer

 

McArdle’s presents us with some challenges but also unexpected rewards. It is part of us, but it does not define us. We should listen to the sound advice of our medical team, but most of all we should be positive and enjoy life, it has a lot to offer us.

Me as a young girl, long before diagnosis.
Me as a young girl, long before diagnosis.

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Visiting the McArdle’s Clinic around 2000 when it was in Oswestry.
Visiting the McArdle’s Clinic around 2000 when it was in Oswestry.

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Today outings are helped by my trusty pavement scooter I call Duggie.
Today outings are helped by my trusty pavement scooter I call Duggie.

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Me as a young girl, long before diagnosis.
Me as a young girl, long before diagnosis.

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Scroll through a couple of photos.

So what can we achieve despite our McArdle’s? 
I have no great claim to fame, but I have had a full life and managed to bring up and care for my three children. I now have lovely grandchildren (and I am pleased to say that none of them have McArdle’s). We can achieve most things in life, we may just need to do it in a slightly different way, or at a slower pace.

 

What advice would I give newly diagnosed patients?
I would say be proud of yourselves, and enjoy being part of the McArdle’s community. Listen to the excellent advice of our UK McArdle’s Clinic and also the AGSD-UK and IamGSD. You may not be as strong or as fast as others, but you will gain inner strength.