Hi everyone,
Thanks so much Janene.
Even though I am a bit late I have finally made it back here with another MD story as promised.
This month we would like to introduce you to Janene. Janene's son has MD and she has been kind enough to share her thoughts and feelings with us to help the wider community understand what MD is all about and why we are raising money for this cause.
Thanks so much Janene.
My Son’s FSH MD: A Diary Extract – by Janene
My son was diagnosed with Facioscapulohumeral Muscular Dystrophy in April 2004 – he was aged 16.
At this time we were told there was no treatment and that whatever muscle loss had been experienced over the past 5 years would occur in the next 5 years! To say the least we were extremely concerned.
We approached a personal friend who is also a strength and conditioning coach with an in-depth knowledge of the muscular system (we had absolutely none!). We were desperate to do something that may at least slow down the progress of the condition. Together, we carried out research on the Internet, obtained a copy of the physiotherapist strength test results and devised a plan, which I also discussed with our GP.
Our Goals:
1. To keep my son functional in his day to day activities, and
2. If possible to stop any more deterioration of his muscles in the hope that is condition would plateau.
Our Plan:
1. Two 1 hour strength and conditioning sessions per week to include:
a) One session of massaging and stretching exercise
b) One session to do a controlled weights programme including aerobic exercise
Great care is taken to ensure plenty of recovery time between exercise/weight sessions.
He is weighed every week to monitor any change in his body mass.
2. Creatine supplement daily, together with a protein supplement taken from time to time if needed (especially when working).
My son was diagnosed with Facioscapulohumeral Muscular Dystrophy in April 2004 – he was aged 16.
At this time we were told there was no treatment and that whatever muscle loss had been experienced over the past 5 years would occur in the next 5 years! To say the least we were extremely concerned.
We approached a personal friend who is also a strength and conditioning coach with an in-depth knowledge of the muscular system (we had absolutely none!). We were desperate to do something that may at least slow down the progress of the condition. Together, we carried out research on the Internet, obtained a copy of the physiotherapist strength test results and devised a plan, which I also discussed with our GP.
Our Goals:
1. To keep my son functional in his day to day activities, and
2. If possible to stop any more deterioration of his muscles in the hope that is condition would plateau.
Our Plan:
1. Two 1 hour strength and conditioning sessions per week to include:
a) One session of massaging and stretching exercise
b) One session to do a controlled weights programme including aerobic exercise
Great care is taken to ensure plenty of recovery time between exercise/weight sessions.
He is weighed every week to monitor any change in his body mass.
2. Creatine supplement daily, together with a protein supplement taken from time to time if needed (especially when working).
3. High protein and low fat diet (he was overweight at the time of the diagnosis).
After only a few weeks we began to see some small improvements in his strength as well as noticeable fat loss.
It has now been over two years since my son was diagnosed and he continues with his strength and conditioning program. His strength has improved significantly and he is virtually symptom free.
The significant improvement has prompted me to write this diary. The memory of his early systems has begun to fade and those who did not know him at the time of diagnosis find it difficult to believe that his loss of strength could have been as bad as it was.
Whilst we are aware he will have to continue his therapy programme always, and that there will probably be further hurdles in years to come, we are heartened to have made such incredible progress and improvement.
One of my great concerns is that at the time of diagnosis, when most of us are shocked and grieving, we were unable to find any guidance or direction towards any therapy program. I feel that there is a great need for help and assistance in this area.
Timeline:
April 2003: First symptoms began to appear
April 2004: Diagnosis – moderate FSH MD
May 2004: Program starts
Feb 2005: Significant strength improvement – diagnosis downgraded to “mild”
After only a few weeks we began to see some small improvements in his strength as well as noticeable fat loss.
It has now been over two years since my son was diagnosed and he continues with his strength and conditioning program. His strength has improved significantly and he is virtually symptom free.
The significant improvement has prompted me to write this diary. The memory of his early systems has begun to fade and those who did not know him at the time of diagnosis find it difficult to believe that his loss of strength could have been as bad as it was.
Whilst we are aware he will have to continue his therapy programme always, and that there will probably be further hurdles in years to come, we are heartened to have made such incredible progress and improvement.
One of my great concerns is that at the time of diagnosis, when most of us are shocked and grieving, we were unable to find any guidance or direction towards any therapy program. I feel that there is a great need for help and assistance in this area.
Timeline:
April 2003: First symptoms began to appear
April 2004: Diagnosis – moderate FSH MD
May 2004: Program starts
Feb 2005: Significant strength improvement – diagnosis downgraded to “mild”
Oct 2006: Continuing to remain strong and as always, positive.
Janelle's Layout scrapped by Kellie Cavenett from Scrapneeds.
Don't forget, you can also read Lisa's Story HERE!
