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I'm writing a book – wanna help?
Hello Friends,
I’m currently writing a middle grade novel about two female best friends in 5th grade. One of the duo has MD. She uses the assistance of a wheelchair at school, but still has good muscle control for small periods of time. I’ve done loads and loads of research, but would greatly benefit from first-hand information regarding physician appointments. I’ve tried to email and get in touch with local doctors, but have had little to no response, which is frustrating. So, if you’d like to help:
1. Which physicians are seem most frequently? Say, monthly, for a girl of 10/11-ish? And, how do those appointments go? (What does the doctor ask you to do, what do they routinely check for, whats a typical meeting consist of?)
*From what I’ve been gathered, OT & PT are common, as well as a pulmonologist, and perhaps a cardiologist?2. Socially, I’d love to know your grievances with other people? Everyday things, small things that drive you bonkers that others do or say.
I’m trying to make my character as real as possible. I’ll likely have several more questions. Thank you for any and all help!
Reply To: I'm writing a book – wanna help?I wonder if you are from teh other side of the pond when you talk of fifth grade. this side we talk of year groups like year five or year eleven. Item 1 tends to look at from a US point of view too so if it is the case perhaps you could clarify the target audience. Is it to be US based or UK based? It would help us to help you.
Whilst I have no personal experiences of that age of children and being diagnosed (my child with MD was fifteen when he was diagnosed), may I offer a comment to number 2. Grievances – Not being seen. I am in a large scooter, with yellow bag on the back and a high vis jacket on and yet people still walk in front of me as though I am not there. If I run into someone then its me that gets the blame. Able bodied people using lifts in stores meaning I often have long waits to change floors. Not being able to access shops, and when I do my scooter cannot get around them because of display stands in the aisles. Increasing paucity of disabled parking bays. Able bodied people using disabled bays at large stores. Not being able to use public transport with my scooter. Last, for now, but certainly not least, when people talk to my my and I they never look at me or even talk behind me. The “does he take sugar” approach.
The list could be endless but I am sure others will chime in with their thoughts too. Hire a mobility scooter for a day and go shopping, you will soon see what I mean.Mike
PS Able bodied people using disabled loos
So many love songs, so little love.
Reply To: I'm writing a book – wanna help?Hello Friends,
I’m currently writing a middle grade novel about two female best friends in 5th grade. One of the duo has MD. She uses the assistance of a wheelchair at school, but still has good muscle control for small periods of time. I’ve done loads and loads of research, but would greatly benefit from first-hand information regarding physician appointments. I’ve tried to email and get in touch with local doctors, but have had little to no response, which is frustrating. So, if you’d like to help:
1. Which physicians are seem most frequently? Say, monthly, for a girl of 10/11-ish? And, how do those appointments go? (What does the doctor ask you to do, what do they routinely check for, whats a typical meeting consist of?)
*From what I’ve been gathered, OT & PT are common, as well as a pulmonologist, and perhaps a cardiologist?2. Socially, I’d love to know your grievances with other people? Everyday things, small things that drive you bonkers that others do or say.
I’m trying to make my character as real as possible. I’ll likely have several more questions. Thank you for any and all help!
As Mike said above the UK system differs greatly from the US. In the US scoliosis which lots of MD people develope (curvature of spine ) I gather is routinely screened for in most girls at 10 plus. In the UK it is not.
Taking my own experiences. after diagnosis around age 9 (muscle biopsy taken) I was seen once every six months for weight. height, bloods, Cardiology for echocardiogram. Xrays taken to monitor the progression of my scoliosis. But due to cost and budget in NHS was not corrected till late teens. then six monthly for respiratory sleep studies once Bipap Breathing support started.
steroids where tried periodically to try to improve muscle and lung function.
Mechanical Bipap ventilation was started in mid teens as respiratory function became compromised when sleeping.
on a general note. some people may see a Speech and language specialist on a weekly or month basis to develop speech control or maintaining swallow function.. others may have access to physiotherapy. hydrotherapy or respiratory therapy to clear chest infections.
others may get regular appointments for CAFOS ie leg and ankle supports. to support walking.
The Judy Blume Book portrays a very accurate description of scoliosis. living as a teen with scoliosis. ‘Deenie’
Reply To: I'm writing a book – wanna help?thinking back the key challenge as a teen was accessibility in the world around me.
My friends had to often carry me up flights of stairs. And I often couldn’t attend if the venue wasn’t accessible ie no accessible toilet.
Reply To: I'm writing a book – wanna help?Hi,
The only professional I saw regularly was my physiotherapist. She visited my home once a week. Other than that it was annual trip to London to see the Muscle Clinic and rare visit from OT if there was an issue that we needed help with.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Reply To: I'm writing a book – wanna help?Mike – Thank you so much for your response. I’m from the US, so I see your point of confusion regarding the grade/years difference. I guess it would equate to years 5 or 6 given her age. Also, the grievances make complete sense. It’s interesting you say “not being seen,” where the few kids I’ve spoken with seemed concerned with quite the opposite, people staring or constantly asking them what was wrong with them. Very interesting. Thanks again!
Reply To: I'm writing a book – wanna help?Thank you all very much for your help & information. If anything else pops up, please write on. I appreciate your responses!
Reply To: I'm writing a book – wanna help?Just wanted to update:
I’ve finished the novel! I completed the first draft this past December, then have been editing and using beta readers until May. I’m currently sending it out to literary agents in my best efforts to get it published. Thank you all so much for your help!
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