mikado54mark's interview
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How did all start?
Pins and needles in left foot, then left arm, thought I was having a stroke. Fortunatey my partner, a specialist nurse ruled this out. I have been managing a chronic lumbar condition for years and thought it was a trapped nerve. Next morning, numb from waist down. Bowel / Bladder dysfunction. A trip to A&E and Cauda Equina was susepcted, an MRI was carried out, the results sent to the nuero dept at Preston Royal . . . CE ruled out, but a flash was noticed in the cervical area of the spine. Discharged.
Do you already have a diagnosis? How long did it take you to get it?
Yes, I have a goagnosis, it took 8 weeks after the MRI.
For what medical specialties have you been treated? What has been the most useful specialty for your?
10 weeks on, still no treatment, having to fight with my GP, fought for a referral to the Walton Centre, which is close by, but I had to learn about from America. The best speciaity for me to date is Dr Google and self preservation. On my own, in the cold.
What has been the most useful thing for you so far?
The TM Association and countless early morini g hours researching online.
What have been your biggest difficulties?
A GP sevice thats been obliging at best after assertive visits to beg for help. Also condition was detected after 18 hours, no treatment, slow, slow, slow response from Preston Royal Hospital.
How has your social and family environment reacted? Have your social or family relationships changed?
Socially, I am not engaging at the moment as thuogh I can walk with difficulty, my feet are solid and I quickly become fatiqued. Family: my 21 year old son has become confrontational with me, he thinks I am attention seeking . . . Like WTF!
What things have you stopped doing?
Building, working, gardening, motorcycling, and all physical, social activities for the momoent.
What do you think about the future?
Waiting for treatment, will take it all one day at a time, I realise at age 54 and still upright (just) I’m doing a lot better than many. I was previously rather healthy and ate reasonably well. At the momoent, I’m trying to eat myself well
So far, which years have been the best years in your life? What have you done during them?
Most of them, I’ve put a lot into my life, and worked harder than most, physically and mentally. Not complaining, its because I enjoy it. Played hard to, with more physical work, as I enjoy expressing myself in a creative fashion. Work for a living, work for pleasure
What would you like to do if you didn’t have your condition?
Carry on working, one of my unfinished projects is my nature reserve
If you had to describe your life in a sentence, what would it be?
Forty years voluntary Hard labour on a rockpile, then caged against your will
Finally, what advice would you give to a person in a similar situation?
Be strong by being positive, and you will see this is just another obstacle in the twists and turns life throws at us. Yon & Yang, where this dark there is light, -/+ sickness/health its a law of the universe, nothing we can do abuot that, but be gratefull as there are many worse off
