Breathe with MD asked Bebe Longoria, "How do YOU breathe with MD?"
Bebe is from Texas and was diagnosed with Limb Girdle Muscular Dystrophy (LGMD) at 28 years old. Four years ago, she started to have trouble breathing at night while trying to sleep. She recalls, “I would wake up gasping for air.” She also describes having trouble if she was out in warm or hot weather. It made her feel as if she was suffocating and struggling to breathe.
Bebe spoke with her neurologist and pulmonologist about these symptoms, and they told her she needed to use a BiPAP to assist with her breathing while she slept. Her pulmonologist also recommended a portable Trilogy ventilator that allows her to use it as needed during the day whether at home or on the go.
When Breathe with MD asked Bebe what it was like to begin ventilation assistance, Bebe said, “When I first began using the BiPAP machine with full facial mask, I went through a few different masks and sizes before I was comfortable. The first mask I started with caused a deep gash across the bridge of my nose. I finally found I was comfortable with the nasal mask. But the first few days, it was very uncomfortable, and I had trouble falling asleep .”
Bebe shared that she started to use the Trilogy throughout the day and that it has helped her tremendously. She said, “On my last visit to the pulmonologist, my nurse said my breathing had improved compared to my visit from the same time the year before.”
Bebe believes having ventilation assistance over the last four years has made a big difference in her life. She said “I am able to take my Trilogy machine while I'm out and about. I have a car plug, so when I am in a vehicle, I'm able to continue to strengthen my lungs. I am also able to have more time to have a social life.”
Bebe says she’s even noticed that she is able to speak more clearly and louder than she did before she started using assisted ventilation. “Before the Trilogy, just a simple conversation would wear me out. People would have trouble hearing me because I barely had enough air in my lungs or strength to speak,” said Bebe.
Breathe with MD asked “What would you tell someone today who was experiencing symptoms of breathing issues? “ Bebe said she highly recommends you speak to a pulmonologist and ask about not only a BiPAP machine for assisted breathing while sleeping but also using a Trilogy ventilator througout the day for added measure. She shares, “I know using these machines along with my Abuterol with my IPPB will prolong my breathing and just might prevent one day having to have a tracheostomy.” (IPPB stands for Intermittent Positive Pressure Breathing and is a device that can deliver aerosolized medications or even clear secretions. It is sometimes called “lung expansion therapy.”)
Bebe continued, “If ventilation assistance is suggested by your doctor, welcome it with open arms and an open mind. It has been a lifesaver for me, and it just may be a preventive measure against my one day having to get a trach.”
If you or a loved one who uses non-invasive ventilation or invasive ventilation for assisted breathing with a type of Muscular Dystrophy would like to be featured in “How do YOU breathe with MD?,” send us a private message on this page, or e-mail us at BreathewithMD@charter.net.
Breathe with MD asked David Siggers, "How do YOU breathe with MD?"
David Siggers lives in the UK and was diagnosed with Duchenne Muscular Dystrophy. However, this diagnosis is being questioned, and Limb-Girdle Muscular Dystrophy is being suggested as more likely. David shares, “Between 1990 to 1993, when I was 30-33,” was when his symptoms of breathing complications began. He said that small signs of a problem occurred when he would exert himself, and then he would get a cough and suspect something was not right. Later he had a lot of headaches, especially in the mornings, and he was feeling sleepy a lot. (Morning headaches and daytime sleepiness are signs of chronic under-ventilation. Weak or ineffective cough is also a problem in many who live with a neuromuscular disease.)
As far as treating the symptoms, David shares, “I was tried on a rocking bed in a hospital (The Lane Fox Respiratory Unit at St Thomas’ Hospital) for two nights, and it helped, so one was dispatched to my home, set up, and I was home and ventilating on the bed every night just four days later.”
David currently needs 24/7 ventilation and uses a NIPPY 3. He is blessed to have a backup NIPPY 3 and still uses the rocking bed. “I have a Cough Assist too,” he shares.
When David started ventilation, he said, “Well it was difficult. Not so much using the rocking bed; I got used to that in about a week. In fact it became and is still enjoyable to use.” He continued, “…when rocking you are free of the tyranny of the face mask. But using the NIPPY was hard because I have mild claustrophobia and felt stifled and frequently panicked. Mentally it was/is tough, and my confidence just vanished.” David said that with these methods of treatment, however, his symptoms disappeared because he was being well ventilated all night.
When asked how ventilation use impacts his life, David shared, “Going out is like a military operation. I take a lot with me when I travel, and it becomes a chore rather than a pleasure; and that becomes a reason not to move. Anyone on 24/7 ventilation will understand. You are connected to your ventilator not just physically but mentally. It is tough. I have a wife and nine year old daughter and miss out on so many things.”
Having said that, David advises that anyone having symptoms of breathing muscle weakness from their neuromuscular disease should get help as soon as possible. He admits that like we at Breathe with MD have seen in the US, getting the appropriate help can be a challenge since so many doctors fail to see the signs, unless they are specialists in the breathing issues of patients with neuromuscular disease. David’s final bit of advice is “Do it. It is better in the long run for your health, and if you have any form of MD you will deteriorate.”
We second that advice at Breathe with MD and recommend that regardless of type of neuromuscular disease or age, you should be followed by a specialist who treats patients with the breathing complications of neuromuscular disease. If you haven’t been seen by such a specialist, don’t worry; it’s never too late to get a baseline measure of pulmonary function and learn where you stand. This is one health issue for which it pays to be proactive and start treatment when or soon after symptoms begin, however. It can prevent costly and risky hospitalizations and greatly improve reduced quality of life.
If you or a loved one who uses non-invasive or invasive ventilation for a type of Muscular Dystrophy would like to be featured in “How do YOU breathe with MD?,” send us a private message on our Facebook page, https://www.facebook.com/BreatheWithMD, or e-mail us at BreathewithMD@charter.net.
Bebe is from Texas and was diagnosed with Limb Girdle Muscular Dystrophy (LGMD) at 28 years old. Four years ago, she started to have trouble breathing at night while trying to sleep. She recalls, “I would wake up gasping for air.” She also describes having trouble if she was out in warm or hot weather. It made her feel as if she was suffocating and struggling to breathe.
Bebe spoke with her neurologist and pulmonologist about these symptoms, and they told her she needed to use a BiPAP to assist with her breathing while she slept. Her pulmonologist also recommended a portable Trilogy ventilator that allows her to use it as needed during the day whether at home or on the go.
When Breathe with MD asked Bebe what it was like to begin ventilation assistance, Bebe said, “When I first began using the BiPAP machine with full facial mask, I went through a few different masks and sizes before I was comfortable. The first mask I started with caused a deep gash across the bridge of my nose. I finally found I was comfortable with the nasal mask. But the first few days, it was very uncomfortable, and I had trouble falling asleep .”
Bebe shared that she started to use the Trilogy throughout the day and that it has helped her tremendously. She said, “On my last visit to the pulmonologist, my nurse said my breathing had improved compared to my visit from the same time the year before.”
Bebe believes having ventilation assistance over the last four years has made a big difference in her life. She said “I am able to take my Trilogy machine while I'm out and about. I have a car plug, so when I am in a vehicle, I'm able to continue to strengthen my lungs. I am also able to have more time to have a social life.”
Bebe says she’s even noticed that she is able to speak more clearly and louder than she did before she started using assisted ventilation. “Before the Trilogy, just a simple conversation would wear me out. People would have trouble hearing me because I barely had enough air in my lungs or strength to speak,” said Bebe.
Breathe with MD asked “What would you tell someone today who was experiencing symptoms of breathing issues? “ Bebe said she highly recommends you speak to a pulmonologist and ask about not only a BiPAP machine for assisted breathing while sleeping but also using a Trilogy ventilator througout the day for added measure. She shares, “I know using these machines along with my Abuterol with my IPPB will prolong my breathing and just might prevent one day having to have a tracheostomy.” (IPPB stands for Intermittent Positive Pressure Breathing and is a device that can deliver aerosolized medications or even clear secretions. It is sometimes called “lung expansion therapy.”)
Bebe continued, “If ventilation assistance is suggested by your doctor, welcome it with open arms and an open mind. It has been a lifesaver for me, and it just may be a preventive measure against my one day having to get a trach.”
If you or a loved one who uses non-invasive ventilation or invasive ventilation for assisted breathing with a type of Muscular Dystrophy would like to be featured in “How do YOU breathe with MD?,” send us a private message on this page, or e-mail us at BreathewithMD@charter.net.
Breathe with MD asked David Siggers, "How do YOU breathe with MD?"
David Siggers lives in the UK and was diagnosed with Duchenne Muscular Dystrophy. However, this diagnosis is being questioned, and Limb-Girdle Muscular Dystrophy is being suggested as more likely. David shares, “Between 1990 to 1993, when I was 30-33,” was when his symptoms of breathing complications began. He said that small signs of a problem occurred when he would exert himself, and then he would get a cough and suspect something was not right. Later he had a lot of headaches, especially in the mornings, and he was feeling sleepy a lot. (Morning headaches and daytime sleepiness are signs of chronic under-ventilation. Weak or ineffective cough is also a problem in many who live with a neuromuscular disease.)
As far as treating the symptoms, David shares, “I was tried on a rocking bed in a hospital (The Lane Fox Respiratory Unit at St Thomas’ Hospital) for two nights, and it helped, so one was dispatched to my home, set up, and I was home and ventilating on the bed every night just four days later.”
David currently needs 24/7 ventilation and uses a NIPPY 3. He is blessed to have a backup NIPPY 3 and still uses the rocking bed. “I have a Cough Assist too,” he shares.
When David started ventilation, he said, “Well it was difficult. Not so much using the rocking bed; I got used to that in about a week. In fact it became and is still enjoyable to use.” He continued, “…when rocking you are free of the tyranny of the face mask. But using the NIPPY was hard because I have mild claustrophobia and felt stifled and frequently panicked. Mentally it was/is tough, and my confidence just vanished.” David said that with these methods of treatment, however, his symptoms disappeared because he was being well ventilated all night.
When asked how ventilation use impacts his life, David shared, “Going out is like a military operation. I take a lot with me when I travel, and it becomes a chore rather than a pleasure; and that becomes a reason not to move. Anyone on 24/7 ventilation will understand. You are connected to your ventilator not just physically but mentally. It is tough. I have a wife and nine year old daughter and miss out on so many things.”
Having said that, David advises that anyone having symptoms of breathing muscle weakness from their neuromuscular disease should get help as soon as possible. He admits that like we at Breathe with MD have seen in the US, getting the appropriate help can be a challenge since so many doctors fail to see the signs, unless they are specialists in the breathing issues of patients with neuromuscular disease. David’s final bit of advice is “Do it. It is better in the long run for your health, and if you have any form of MD you will deteriorate.”
We second that advice at Breathe with MD and recommend that regardless of type of neuromuscular disease or age, you should be followed by a specialist who treats patients with the breathing complications of neuromuscular disease. If you haven’t been seen by such a specialist, don’t worry; it’s never too late to get a baseline measure of pulmonary function and learn where you stand. This is one health issue for which it pays to be proactive and start treatment when or soon after symptoms begin, however. It can prevent costly and risky hospitalizations and greatly improve reduced quality of life.
If you or a loved one who uses non-invasive or invasive ventilation for a type of Muscular Dystrophy would like to be featured in “How do YOU breathe with MD?,” send us a private message on our Facebook page, https://www.facebook.com/BreatheWithMD, or e-mail us at BreathewithMD@charter.net.