It seems the folks from Baltimore are doing it again - leading the way - this time with our older boys with duchenne. Vickie Beard and Adele Abramowitz are starting a co-op for parents and adult men with duchenne.
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If you are the parent of a child with DMD or other related neuromuscular disease could you use help with care giving?
Do you have travel plans, vacation plans, or other interest you can't accomplish because of care giving restraints?
Could you care for others in a situation similar to yours? Would you be interested in a co-op for care? Could you afford to pay a fair price for that care if you could not become involved in the co-op due to time or physical complications?
Would you be interested in spa for a day, with whirlpool bath included. We know this is not something most of our young men have access to, it has worked miracles for the Beard household.
As parents and caregivers of adult young men with DMD, we quite often find ourselves as much a prisoner of their disease as they are.
As a parent with more than one child having DMD the hurdles become even more difficult. The adult DMD Clinic at Hopkins now sees approximately 50 adult young men in the advanced stages of DMD. Needless to say finding qualified dependable caregivers to provide respite for family caregivers is difficult at best. I'm Vickie Beard: I have 2 sons ages 26 and 28 with DMD. This co-op has been an ongoing discussion between myself and my friend Adele Abramawitz, who's son Jason (23) also has DMD. My home is well equipped to take care of my 2 sons as well as Jason, and quite possibly equipped well enough to take care of several others on a long or short term basis.
Adele and I are interested in meeting with other DMD patients and their caregivers/family to discuss the implementation of a co-op model for sharing the caring.
Are you interested? If so please contact either Adele or myself at;
Vickie@ viclebeard@aol.com
301-502-1657 mobile
301-262-9515 Home
OR
Adele@ jason65@verizon.net
443-520-1331 mobile
Interested In receiving a FREE copy? Email Tina Duong at tduong@cnmcresearch.org
April 30, 2008
April 18, 2008
Diaphragm Pacing System
Diaphragm Pacing System (DPS) is a pacemaker for the lungs, which is showing promise in a clinical trial to alter or stop respiratory decline in ALS patients. Could DPS likewise benefit our boys with Duchenne?
DPS is an alternative to mechanical ventilation. An electrode is surgically placed on a major breathing muscle, the diaphragm. DPS stimulates the diaphragm, thus allowing it to contract and the lungs to breath under the muscle's own power.
Raymond Onders, MD, from Case Western Reserve University and University Hospitals in Cleveland, OH, directs the clinical trial, which tests DPS in patients with ALS, a progressive neuromuscular disease. As their disease progresses, people with ALS require ventilatory support, as do our boys with duchenne.
More information about the study, "Motor-Point Stimulation for Conditioning the Diaphragm of Patients With Amyotrophic Lateral Sclerosis (ALS)", can be found on the ClinicalTrials.gov web site.
Unlike mechanical ventilation with tracheostomies, DPS is minimally invasive and will likely be implanted in a simple in-out surgery. According to Dr. Onders, ventilators, and the support people needed to maintain them, can cost anywhere from $100,000 - $150,000 annually (see www.focusonals.com), whereas DPS may cost as little as $15,000 – $20,000.
DPS is made by Avery Biomedical Devices, has full FDA approval and, although it is in clinical trials for ALS patients, it is available commercially. According to an on-line advertisement for the Mark IV breathing pacemakers, as it is known commercially, the lung pacemaker can be used for "patients with chronic respiratory insufficiency whose diaphragm, lungs, and phrenic nerves have residual function.” (www.averylabs.com/index.html)
Favorable cost variance, low risk of infection, minimal invasiveness and preserved muscle mass gives DPS a decided advantage over mechanical ventilation.
Could it be time to talk about clinical trials for our boys with duchenne?
______________
Thanks to Annie Kennedy, MDA Vice President for Advocacy, for giving me the idea to write this article.
DPS is an alternative to mechanical ventilation. An electrode is surgically placed on a major breathing muscle, the diaphragm. DPS stimulates the diaphragm, thus allowing it to contract and the lungs to breath under the muscle's own power.
Raymond Onders, MD, from Case Western Reserve University and University Hospitals in Cleveland, OH, directs the clinical trial, which tests DPS in patients with ALS, a progressive neuromuscular disease. As their disease progresses, people with ALS require ventilatory support, as do our boys with duchenne.
More information about the study, "Motor-Point Stimulation for Conditioning the Diaphragm of Patients With Amyotrophic Lateral Sclerosis (ALS)", can be found on the ClinicalTrials.gov web site.
Unlike mechanical ventilation with tracheostomies, DPS is minimally invasive and will likely be implanted in a simple in-out surgery. According to Dr. Onders, ventilators, and the support people needed to maintain them, can cost anywhere from $100,000 - $150,000 annually (see www.focusonals.com), whereas DPS may cost as little as $15,000 – $20,000.
DPS is made by Avery Biomedical Devices, has full FDA approval and, although it is in clinical trials for ALS patients, it is available commercially. According to an on-line advertisement for the Mark IV breathing pacemakers, as it is known commercially, the lung pacemaker can be used for "patients with chronic respiratory insufficiency whose diaphragm, lungs, and phrenic nerves have residual function.” (www.averylabs.com/index.html)
Favorable cost variance, low risk of infection, minimal invasiveness and preserved muscle mass gives DPS a decided advantage over mechanical ventilation.
Could it be time to talk about clinical trials for our boys with duchenne?
______________
Thanks to Annie Kennedy, MDA Vice President for Advocacy, for giving me the idea to write this article.
April 2, 2008
Photos by Scott Sands
A bit ago, as I looked through my email I noticed that Scott Sands, had another blog entry on Scott Sands Alive and followed a link to some georgeous photography.
He's 41 years old and he has duchenne dystrophy. He's been on a vent since his twenties. His work enchanted me. The man is a poet with a camera.
It's been a while since Scott used his camera. Years ago he put it away when his muscular dystrophy began to wear on him.
As Scott tells it:
I stopped taking pictures in 1999 when I could no longer push the button on the electronic cable release that enabled me to focus and snap the shots. I also began to have trouble tilting my head forward to look through the viewfinder of my Nikon 35mm SLR.
I basically grew discouraged, so I gave up, which is something I rarely...well, never do.
Nine years later, Scott changed his mind. Some of his work can be found in a slide show at the top of my blog. His photos are an oasis of light, shading, water, trees and calm.
I asked him, why now? Why wait a decade and start it up again?
Scott has a mission, which he shared with me.
Now that I have a blog aimed at offering inspiration and hope to others with Duchenne and their parents, I can't afford to be discouraged by anything. I feel like I have a responsibility to do as much as I possibly can in order to show others that DMD does not have to keep you down.
He's 41 years old and he has duchenne dystrophy. He's been on a vent since his twenties. His work enchanted me. The man is a poet with a camera.
It's been a while since Scott used his camera. Years ago he put it away when his muscular dystrophy began to wear on him.
As Scott tells it:
I stopped taking pictures in 1999 when I could no longer push the button on the electronic cable release that enabled me to focus and snap the shots. I also began to have trouble tilting my head forward to look through the viewfinder of my Nikon 35mm SLR.
I basically grew discouraged, so I gave up, which is something I rarely...well, never do.
Nine years later, Scott changed his mind. Some of his work can be found in a slide show at the top of my blog. His photos are an oasis of light, shading, water, trees and calm.
I asked him, why now? Why wait a decade and start it up again?
Scott has a mission, which he shared with me.
Now that I have a blog aimed at offering inspiration and hope to others with Duchenne and their parents, I can't afford to be discouraged by anything. I feel like I have a responsibility to do as much as I possibly can in order to show others that DMD does not have to keep you down.
But how? How does one who basically cannot move make something so beautiful?
Scott explains:
For now, I can compose a picture by myself even though I struggle to look through my viewfinder, and my nurse just presses the button on the cable release.
He is researching ways to snap the shots himself. Click on Scott's Personal Gallery or on the blog title above to see more of Scott's photographs.
In the meantime, Deb Robbins' son, Doug, uses an adaptable tripod for his camera called Gorillapod, which wraps around the armrest of his wheelchair.
Here are two sites for Gorillapods although they got theirs on e-Bay:
Joby
Kool Tools
If anyone has other photography tips to share, please let me know and I'll publish them on the blog.
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