Helping Dad get Myopro Arm Braces
Donation protected
What would you do if you mysteriously lost the use of both of your arms? Without a known cause, our father has developed what they call "Man in the Barrel Syndrome" this is a double brachial paralysis, a condition so rare most physicians have never heard of it. Even with a trip to the Mayo Clinic, the world’s best physicians were unable to explain the reason why he developed this condition and has lost the use of both of his arms. The doctors said this condition is so rare that there are less than 13 known cases of this in the world. The doctor said this rare neurological disease is classified under the Amyotrophic Lateral Sclerosis or “ALS” category, which is commonly referred to as “Lou Gehrig’s Disease”. The doctors know so little about this syndrome that they cannot even determine if it will become progressively worse. What they do know is that there is no known cure at this time, and that the condition is irreversible.
Our dad Ron “Beef” Bachmann grew up on a dairy farm in Carver County. He started his own construction business and was a hardworking man, who always worked with his hands. He had to retire from his work, not because he wanted to, but this condition forced him to. Without the use of his arms and hands, he relies on our Mom for help with even the most mundane day-to-day things like getting dressed, showering, brushing his teeth and eating a meal. He misses getting ready for work in the morning and not being able to make his own pot of coffee.
He has twin grandchildren. Before he developed the condition, he enjoyed playing with them. Now that they are 7 years old, he’d love to teach them how to fish, just like his grandfather taught him. However, Dad can’t hold a fishing pole or even extend his arms out to give them a simple hug.
We have done countless hours of research to find whatever we could to help our dad gain a little more independence and a better quality of life. We discovered this amazing company called Myomo. They have a device which is called a MyoPro which is a myoelectric limb orthosis and it is a powered brace that supports a weakened and deformed arm for functional use. In addition, the MyoPro can reinitiate movement of a partially paralyzed arm to enhance function and quality of life. It is designed for individuals with stroke, MS, ALS, brain & spinal cord injury, and other neuromuscular disorders. Our Dad would be a perfect candidate for these braces based on his diagnosis. The braces for his arms are available by prescription only because they cost $50,000 (EACH). Here's a video link showing it in use http://youtu.be/BtQuv9mW5e8
His doctors at the Mayo Clinic felt these braces would greatly improve his day to day life and she wrote a prescription for both of his arms. Now here is where our real nightmare and challenge has started. Our dad has been waiting over 3 months to see if Medicare would cover any part of the cost of these braces. However, we just learned this week that Medicare wasn’t going to cover anything.
Our Mom is the full time caregiver for our dad and she has called weekly to the Mayo clinic and Medicare trying to get answers as to why these would not be covered. She gets the run around and no answers. The Mayo clinic said they could attempt to submit a claim however, if it comes back that Medicare still isn’t going to pay for anything then my parents would owe the full $100k plus all the therapy costs associated with the follow up required.
Our Dad has never asked for help or anyone to ever feel sorry for him. Our hope is that by sharing our Dad’s story, we will be able to help him afford one brace, and to be honest our Dad would be so grateful and happy with just one brace at this point just so he could feel a little more independent.
Thank you so much for taking the time to read this.
Michelle & Aimee
Our dad Ron “Beef” Bachmann grew up on a dairy farm in Carver County. He started his own construction business and was a hardworking man, who always worked with his hands. He had to retire from his work, not because he wanted to, but this condition forced him to. Without the use of his arms and hands, he relies on our Mom for help with even the most mundane day-to-day things like getting dressed, showering, brushing his teeth and eating a meal. He misses getting ready for work in the morning and not being able to make his own pot of coffee.
He has twin grandchildren. Before he developed the condition, he enjoyed playing with them. Now that they are 7 years old, he’d love to teach them how to fish, just like his grandfather taught him. However, Dad can’t hold a fishing pole or even extend his arms out to give them a simple hug.
We have done countless hours of research to find whatever we could to help our dad gain a little more independence and a better quality of life. We discovered this amazing company called Myomo. They have a device which is called a MyoPro which is a myoelectric limb orthosis and it is a powered brace that supports a weakened and deformed arm for functional use. In addition, the MyoPro can reinitiate movement of a partially paralyzed arm to enhance function and quality of life. It is designed for individuals with stroke, MS, ALS, brain & spinal cord injury, and other neuromuscular disorders. Our Dad would be a perfect candidate for these braces based on his diagnosis. The braces for his arms are available by prescription only because they cost $50,000 (EACH). Here's a video link showing it in use http://youtu.be/BtQuv9mW5e8
His doctors at the Mayo Clinic felt these braces would greatly improve his day to day life and she wrote a prescription for both of his arms. Now here is where our real nightmare and challenge has started. Our dad has been waiting over 3 months to see if Medicare would cover any part of the cost of these braces. However, we just learned this week that Medicare wasn’t going to cover anything.
Our Mom is the full time caregiver for our dad and she has called weekly to the Mayo clinic and Medicare trying to get answers as to why these would not be covered. She gets the run around and no answers. The Mayo clinic said they could attempt to submit a claim however, if it comes back that Medicare still isn’t going to pay for anything then my parents would owe the full $100k plus all the therapy costs associated with the follow up required.
Our Dad has never asked for help or anyone to ever feel sorry for him. Our hope is that by sharing our Dad’s story, we will be able to help him afford one brace, and to be honest our Dad would be so grateful and happy with just one brace at this point just so he could feel a little more independent.
Thank you so much for taking the time to read this.
Michelle & Aimee
Organizer
Aimee Bachmann
Organizer
Young America, MN