At the age of two and a half I was being treated for a spastic monoparesis, although I didn’t know I had been diagnosed.
Then, at the age of forty-six, after I had arranged an MRI scan, I was diagnosed with the same condition. When I was referred on to a neuro physio, she noted that two of my limbs were affected, not one, which made my diagnosis spastic ‘hemiparesis’, not ‘monoparesis’.
At the time of diagnosis at forty-six, I must have unconsciously been inquisitive about the first diagnosis, because I found myself looking at the notes from my last consultation with a new specialist, who collaborated with his team to assess the scan results. His letter clearly states the birth-injury problem.
It is hard to believe that not only was I unaware of the original diagnosis, but it was also an incorrect diagnosis. Had I have known about my diagnosis as a child, I would have been living with the wrong diagnosis thinking it was right and would never have stopped to question it.
It has been eight years since my MRI scan and seven years since my last consultation with a new specialist. The correct diagnosis is ‘mild hemiparesis cerebral palsy’.
The original diagnosis never made any sense to me because I have an abnormal variation in muscle tone on my left side. I don't have spastic or floppy limbs. Years on, and now finding out about my diagnosis, it made no sense.
I had no working muscle mass on my left side and yet I was diagnosed as a ‘spastic cerebral palsy.’
I am happy for you that you finally have the correct diagnosis and also sad at the lengths you had to go through to get there.
If it helps you make sense of your life, then it’s been worthwhile.
Thank you. I am particularly sad on the lengths I've had to go through, but finally grateful that I have now got the right diagnosis.
This diagnosis now helps me make sense of all my hardships. It's sad this has been my life. It's not something I would want anyone else to go through.
Yes, it is very sad that you had to deal with these problems for all of your life without even knowing what they really were and without the support of your parents.
It's just hard to imagine, considering that would have been like not helping my daughter and expecting her just deal with her issues. We did grow up in a different age when these issues weren't really talked about, but the least they could have done was let you know that it wasn't your fault.
It's never fair to make your kids feel like everything is your fault, like my parents did to my siblings and I. If it came down to it, I would rather see people not have children if they don't want to take care of them.
I try not to feel this way, but so many times I think I would have rather not been born at all considering what I went through.
Thanks Randy. Of course, I'm not happy about my experiences, but I can't do anything about them. I'm sure you feel the same way about what you had to deal with.
All we can is do what's right for our own children and put our experiences behind us. It's just not worth living with the stress and anxiety.
I think it important we either deal with the issues surrounding our experiences, or let them go.