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We found this information very moving and insightful. The following text is from an open letter providing an adult perspective on aging with cerebral palsy and the benefits of SDR written by Marty Gergoire (Buffalo, New York).
Cerebral palsy (CP) is not a degenerative disorder, which means that the damage to the brain will not worsen over time. But the symtoms of CP can cause significant and worstening issues for the person as they grow and develop.
We would like to thank Marty for allowing us to use his letter and wish him all the very best.
Thank you for taking the time to read this, Steve and Fiona.
"This is a copy of a letter I have shared with many people who are considering the SDR. I also used this letter to help win my appeal for coverage thru my insurance company. I hope it helps those considering the SDR.
I think it is great that you are looking into the SDR . And if there is one doctor to do it, its Dr. Park. The procedure has done a lot to improve my quality of life, and I am confident it will do the same for others. Having only discovered SDR at the age of 29, I feel my end results would have been even greater had my body been even just a decade younger. Having lived with Cerebral Palsy (Spastic Diplegia) for 35 years, I believe it is important for you to
understand what type of road your Oliver may have ahead of him as he gets older and continues to live with Cerebral Palsy.
Little is understood of how the aging process affects persons withCerebral Palsy, as there is simply is little research on the subject.Most of what we do know is obtained through personal accounts and anacdotal evidence.
Literature that examines the issue of older adults with Cerebral Palsy agrees that the aging process begins to affect persons with Cerebral Palsy more quickly and at a younger age than non-disabled people (UCPA, 1993; Overeynder et al., 1994; Miller & Bachrach, 1995). Studies have supported the notion that disabilities, which have a long duration, can produce excessive wear and tear on the muscular, skeletal, and other body systems.
As such, individuals with Cerebral Palsy are experiencing unexpected declines in function and energy levels prematurely. These effects have been found to occur as early as thirty years of age (UCPA, 1993). The physical
challenges of Cerebral Palsy intensify with age, frequently resulting in increased spasticity, fatigue, and the loss of strength and mobility (UCPA, 1994)
Arthritis is a common condition found in people with cerebral palsy. Statistics show that 40% of the people with Cerebral Palsy get arthritis at an early age. Other secondary health problems often appear at a more serious level
because of cerebral palsy, the primary disability. I have personally experienced this as I have become older, particularly in my knees. On rare occasions it can be pretty unbearable.
Depending on lifestyle and type of disability, living 20 to 30 years with a disability can produce wear and tear on the muscles and other body systems. Most people with major physical disabilities of a 30-year duration note
some tenderness and soreness in joints, as well as muscles and tendons that have been carrying an extra load because of impaired physical functioning in other parts of the body.
Upon diagnosis (Spastic Diplegia), my family and I, like so many others, were led to believe that Cerebral Palsy is a non-progressive disorder that could never be cured, but could certainly be managed through various treatments including medication, orthopedic surgeries, physical therapy and or adaptive devices. Having sought out what few treatments were available during my childhood, I had come to understand that I would spend my life differently able than others who are non-disabled. That somewhat prepared me for the effects of aging. What I was not prepared for was the sudden acceleration in the decline of my energy and activity levels.
Beginning in my mid twenties, I noticed an increase in my levels of pain and discomfort, increased pain and stiffness in the joints, a greater incidence of muscle spasms and tightness, mild lower back & hip pain, loss
of flexibility, and general fatigue. All this has happened while still maintaining a strict regimen of stretching, exercise and proper nutrition. I even sought the help of alternative therapies such as deep tissue massage once a
month and Chiropractic care. All this has helped me minimally maintain my current quality of life. However, like many aging disabled adults with Cerebral Palsy, I held fear of what the future had in store. Curious, my research found that in studies, adults with Cerebral Palsy are at risk for having decreased function in their mobility as they age. They can be at risk for falling and developing fractures or related problems.” These problems could include but are not limited to spinal deformities, muscle contractures, weight gain due to loss of mobility, possible depression, all resulting in a decrease in independence and an over all lowering of the quality of life.
Much of the medical research pertaining to Cerebral Palsy is directed toward prevention or the treatment of for the very young. Unfortunately for adults such as myself many treatments simply did not apply to me or came about
too late. For many with Cerebral Palsy, time is not on our side.
Since Having the SDR my life has changed. Gone is the extreme tightness and spasticity. My walking has improved and my joint and muscle pain is all but gone. I now walk more upright and do not crouch as much. My stretching is more efficient and the results are longer lasting. What once took 30 minutes to make loose, now is accomplished in 5-7 minutes and lasts thru the day. If I do over do things, I am only sore for a short time and can use stretching as a way to feel better. You can never be cured from Cerebral Palsy, but the SDR makes living with it a lot more manageable. I can honestly tell you that my body feels ten years younger and I feel like my cross to bear has been
made lighter. As an example I recently ran a 5k run in 39 minutes....thats 25minutes faster than when I tried the same distance before my SDR.
I will keep you and your children in my prayers and would welcome any questions you might have. Feel free to drop a line if I can help you in anyway.
Sincerely
Marty Gregoire
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."
Jeremiah 29:11
Cerebral palsy (CP) is not a degenerative disorder, which means that the damage to the brain will not worsen over time. But the symtoms of CP can cause significant and worstening issues for the person as they grow and develop.
We would like to thank Marty for allowing us to use his letter and wish him all the very best.
Thank you for taking the time to read this, Steve and Fiona.
"This is a copy of a letter I have shared with many people who are considering the SDR. I also used this letter to help win my appeal for coverage thru my insurance company. I hope it helps those considering the SDR.
I think it is great that you are looking into the SDR . And if there is one doctor to do it, its Dr. Park. The procedure has done a lot to improve my quality of life, and I am confident it will do the same for others. Having only discovered SDR at the age of 29, I feel my end results would have been even greater had my body been even just a decade younger. Having lived with Cerebral Palsy (Spastic Diplegia) for 35 years, I believe it is important for you to
understand what type of road your Oliver may have ahead of him as he gets older and continues to live with Cerebral Palsy.
Little is understood of how the aging process affects persons withCerebral Palsy, as there is simply is little research on the subject.Most of what we do know is obtained through personal accounts and anacdotal evidence.
Literature that examines the issue of older adults with Cerebral Palsy agrees that the aging process begins to affect persons with Cerebral Palsy more quickly and at a younger age than non-disabled people (UCPA, 1993; Overeynder et al., 1994; Miller & Bachrach, 1995). Studies have supported the notion that disabilities, which have a long duration, can produce excessive wear and tear on the muscular, skeletal, and other body systems.
As such, individuals with Cerebral Palsy are experiencing unexpected declines in function and energy levels prematurely. These effects have been found to occur as early as thirty years of age (UCPA, 1993). The physical
challenges of Cerebral Palsy intensify with age, frequently resulting in increased spasticity, fatigue, and the loss of strength and mobility (UCPA, 1994)
Arthritis is a common condition found in people with cerebral palsy. Statistics show that 40% of the people with Cerebral Palsy get arthritis at an early age. Other secondary health problems often appear at a more serious level
because of cerebral palsy, the primary disability. I have personally experienced this as I have become older, particularly in my knees. On rare occasions it can be pretty unbearable.
Depending on lifestyle and type of disability, living 20 to 30 years with a disability can produce wear and tear on the muscles and other body systems. Most people with major physical disabilities of a 30-year duration note
some tenderness and soreness in joints, as well as muscles and tendons that have been carrying an extra load because of impaired physical functioning in other parts of the body.
Upon diagnosis (Spastic Diplegia), my family and I, like so many others, were led to believe that Cerebral Palsy is a non-progressive disorder that could never be cured, but could certainly be managed through various treatments including medication, orthopedic surgeries, physical therapy and or adaptive devices. Having sought out what few treatments were available during my childhood, I had come to understand that I would spend my life differently able than others who are non-disabled. That somewhat prepared me for the effects of aging. What I was not prepared for was the sudden acceleration in the decline of my energy and activity levels.
Beginning in my mid twenties, I noticed an increase in my levels of pain and discomfort, increased pain and stiffness in the joints, a greater incidence of muscle spasms and tightness, mild lower back & hip pain, loss
of flexibility, and general fatigue. All this has happened while still maintaining a strict regimen of stretching, exercise and proper nutrition. I even sought the help of alternative therapies such as deep tissue massage once a
month and Chiropractic care. All this has helped me minimally maintain my current quality of life. However, like many aging disabled adults with Cerebral Palsy, I held fear of what the future had in store. Curious, my research found that in studies, adults with Cerebral Palsy are at risk for having decreased function in their mobility as they age. They can be at risk for falling and developing fractures or related problems.” These problems could include but are not limited to spinal deformities, muscle contractures, weight gain due to loss of mobility, possible depression, all resulting in a decrease in independence and an over all lowering of the quality of life.
Much of the medical research pertaining to Cerebral Palsy is directed toward prevention or the treatment of for the very young. Unfortunately for adults such as myself many treatments simply did not apply to me or came about
too late. For many with Cerebral Palsy, time is not on our side.
Since Having the SDR my life has changed. Gone is the extreme tightness and spasticity. My walking has improved and my joint and muscle pain is all but gone. I now walk more upright and do not crouch as much. My stretching is more efficient and the results are longer lasting. What once took 30 minutes to make loose, now is accomplished in 5-7 minutes and lasts thru the day. If I do over do things, I am only sore for a short time and can use stretching as a way to feel better. You can never be cured from Cerebral Palsy, but the SDR makes living with it a lot more manageable. I can honestly tell you that my body feels ten years younger and I feel like my cross to bear has been
made lighter. As an example I recently ran a 5k run in 39 minutes....thats 25minutes faster than when I tried the same distance before my SDR.
I will keep you and your children in my prayers and would welcome any questions you might have. Feel free to drop a line if I can help you in anyway.
Sincerely
Marty Gregoire
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."
Jeremiah 29:11
