Hello and hope you are doing well.
Is this bilateral paralysis or unilateral? For bilateral paralysis, ventilatory support may be needed. In unilateral paralysis plication of the diaphragm may be done to render the flaccid hemidiaphragm taut. At all times the O2 saturation needs to be maintained above 88%, to prevent organ damage. You could try breathing exercises to strengthen the other muscles of respiration.
Hope this helped and do keep us posted.
This is what I wrote back in October 24, 2011:
Hi Name is Clayton Taft I live in Nunda, NY and have been diagnosed with Bilateral Diaphragmatic paralysis which is when both sides of your Diaphragm are paralyzed. I have had many tests done. Like a SNIFF Test and Phrenic Nerve test. They have proved that My Right side Phrenic Nerve is dead and my Left Side is severally compromised. I was in September of 2011 to the Cleveland Clinic see Doctors out there and they feel that the Doctors here in New York are doing exactly what they should be doing. Now I have another Nerve Doctor in Hornell, NY and he thinks that there might be something more going on besides the Diaphragm issues. I have a lot of shaking going on in my arms and legs. My Left arm jerks and I can’t help it. I am between a rock and a hard place. This has been a rough 6 Months let me tell you. They think that I might have ALS but not sure for ALS usually starts up high on you and works down your Nerves they have never seen it start in your Diaphragm area. So they are not sure but they can't say I don’t have it for a 100%. I don't know what next to say only this week has been hell. I have had a real hard time Breathing and my Chest is much tighter and hurts a lot more than it ever did. I don't know if it is a cold which my Family Doctor put me on some Medicine for that just to make sure. I called my Lung Doctor he wants to see me Tomorrow Morning at 10am. Don’t know what or if he can tell me anything but I am very close to going to the Hospital... If there is anyone out there that has Bilateral Diaphragmatic Paralization please respond to this or you can e-mail me at **** @ rochester . rr . com. you know the rest. Thanks for reading I will try to keep checking this out... Maybe a Doctor that has dealt with this more and would like to respond I would love it very much! I just found out today that I am getting worse and have to have a Trach put in and be put on a resp. system. This is def. Not what we wanted to hear and are very shocked with this.
This what I posted on November 7, 2011
Both sides of my Diaphragms are paralyzed. So I need to know if there is anyone out there ever had this and tell me what I have to look forward to. Also if they have ever had a Defib or Pacemaker put on their Diaphragm at all. Had to go through that phrenic Nerve testing I not impressed on that one. I can’t breathe very well. Kind of takes a lot out of me to get through the day. I am only on a Bypap at night time to help with breathing... Other than that I just make it through as I can. I can't walk very far. Hell I can't even walk through Wal-Mart. They also said something about having a Deliberation Or something put on my Diaphragms or Nerve to keep it working a little. See my Left side of my Diaphragm is moving a little but it is classified as Paralyzed because it is not moving that much. So they feel that they need to do something before that stops all together. See I have lost a lot of my life because of this. I just got married 3 years ago expecting to be able to live a long healthy life filled with lots of Dancing and stuff and now... They also said that the only Doctor that is experienced with the Diaphragm area is in NJ. I have had MRI, CT, X-rays, you name it I have had it done. I have not seen the NJ Doctor yet... The Health Insurance has to have their Eyes Dotted and T's Crossed they just don’t take the Doctor's Word. I don't have any problems lying down. I think it is wearing down my Chest Muscles. It hurts all the time. I take Meds for the pain but it just takes the topping off, it doesn’t take it away completely. I am not diagnosed with anything else except they have told me that I have a mild case of Cardiomyopathy. Which my heart doesn’t pump out at the rate it should. A person should be between 50-65 and I am between 40-45. At my age that is a lot lower than it should be but they call it MILD. They really don't k Know what caused this... They are not leaving out anything it could of been the Surgery I also was injured on the job back in 1993 were I fell out of a back of a Truck that I was unloading at the time. I injured my knack and pulled a muscle at the time. They think that might of cause this but it would be very hard to prove cause of the years that have passed. I hope that this NJ thing will help if they send me there. My Doctor here though told me that I will never return to work even with this done. I would just like to be able to get around better and be able to walk and Dance with my Wife again. I know that I have to keep going and try to be able to do what I can. The doctor yesterday said that my Right Diaphragm is gone there is nothing they can do for that. But the Left one is severally compromised. It is working a little bit and enough for me to keep everything the way it is. If we have to down the road I will go for the Pacemaker but right now we should not do anything. He said that this Surgery is too much to do and it would not help any more than just going the route we are going. If something changes down the road we will go that route but right now we should just ride it out. Now all of this I put on here is really old information. I started this back in April 2011 and now it is November 6, 2011. The latest on me is well kind of not what we wanted to hear. I have been getting worse. I now am having more difficulty breathing then before. It is very hard for me to get around. I am using my Chair More than before. I have been going to a new Doctor in Hornell, NY. He is a Nerve Doctor and has been really into looking on my case. I went this past Friday and after my Brain Scan he told us that he has an idea of what I might be having. See I am not only having my Diaphragm issues but I have a lot of shaking and termers in my arms and legs. Which they are calling Myoclonic Jerks. He thought that they are different issues he feels they are linked to an umbrella issue. That there is something going on that is causing both of these things to happen right around the same time. He told us that he feels I might have Acid Maltase Deficiency. What is AMD well? Cause of Acid Maltase Deficiency or Pompe disease Pompe disease is caused by a complete or partial deficiency of the lysosomal enzyme, alpha-glucosidase.
This enzyme is necessary to break down glycogen and to convert it into glucose. Without this enzyme, glycogen, a thick sticky substance, accumulates in the lysosomes (sacs within the muscle cells) and leads to severe muscle degradation. It predominately affects the heart, skeletal, and respiratory muscles of the patient. Pompe disease was first described by Dr. Joannes Pompe (of the Netherlands) in 1936. Pompe patient Joseph Walter created the following presentation on Dr. Pompe: Dr. Pompe Presentation by Joseph Walter Progression of Pompe disease Patients with the infantile form of the disease are the most severely affected. These babies appear normal at birth, but exhibit symptoms by 2-3 months of age (or earlier). Progression is rapid. These patients are so severely affected that they become "limp" Unable to feed or move. Their hearts become massively enlarged, and they typically die of cardio-respiratory failure before reaching 12 months of age. In the delayed onset form progression of the disease is less rapid. Symptoms can manifest at any age of life and can greatly affect the quality of life as well as the life span of the afflicted person. Delayed onset patients that develop symptoms in childhood are more severely affected and typically die by the second or third decade of life. As the disease progresses, patients lose mobility, become wheelchair bound or bedridden. Respiratory functions greatly diminish and mechanical ventilation becomes necessary. Death results from cardio-respiratory complications. Clinical forms of Pompe disease Clinical forms of the disease vary according to the age of onset and percent of enzyme activity. The Infantile Form - appears in the first few months after birth and is characterized by a rapid build-up of glycogen in muscle tissue causing severe muscle weakness and enlargement of the heart and liver. Respiratory and heart complications lead to death by the age of 12 months. The infantile form is characterized by a total lack of the alpha-glucosidase enzyme or by total inactivity of the enzyme. The Delayed Onset Form - can present at any age. Delayed onset patients produce a minimal amount of enzyme. Progression and severity of the disease is probably attributable to the amount of enzyme produced and to the age of onset of symptoms. Glycogen build up is not as rapid as in the infantile form but the disease is progressive and can greatly decrease the life span of the Afflicted person. In the delayed onset form deterioration of muscle is mainly confined to the skeletal muscles, the diaphragm, the limb-girdle, and the trunk. Respiratory complications are the main cause of death. Delayed onset patients that present symptoms early in life are usually more severely affected and rarely survive past the second or third decade of life. Patients that experience onset later in life generally progress at a slower pace. Now he is not sure of anything but he said that he only has seen this one other time and that was over 25 years ago when he started his career at The Cleveland Clinic. Now I don't know a lot about this but everything that I have read sounds so much like what I have been dealing with. I hope that someone out there can contribute some Information on this to me. Please help because I am going to have a Trach put in and be put on a Ventilator at night because they think this will give my Diaphragm a rest and maybe it will help to let me have a little more ease during the day.
This is what I posted the other day on January 20, 2013:
Well it is January 20, 2013 I have had a lot of things good and bad happen to me... I thought I would add to my last post. First I am considered Perm. Disabled. I have been approved for Social Security Disability... I also have gotten my New York State Retirement Disability. This all happen by October 2011.... I was approved on my 1st Application. 2nd My Doctors are all on the same page as they all were in April of 2011 when this all began. They all feel that the Bilateral Diaphragmatic Paralysis that I have been told I have is due to some sort of MDS thing. The problem is that they feel that it has not been discovered yet. They feel that someday it might but with that said the sad thing is more people have to come down with this problem before they will even think to spend the Millions it cost to do Medical testing on it. As well as look into this type of Illness. The More the Merrier however I would not wish this on anyone ever. It turns your life upside down. There are Doctor's in New Jersey and in West Virginia that do procedures on Diaphragms, like defibulators and or Pacers, but they only deal with one side not both. So here is an update on my life. I am doing ok. I get very tired very fast. It is not like wow I am getting tired it is like oh man I need to sit NOW and REST NOW. I do have a Chair to use when I go to the Store or Mall. I have Sex with my Wife and I am done all the next day. If I talk a lot during the day I am more tired that night. I have been doing my Family tree. I have had my Mom come over to help me with it. I might work on it for a Couple of hours and then I am done. It is all on the Computer no WORK required but I am tired and have to sit down and rest. The other day I got up when 20 mins over the hill to pick up my Mom took her to Rochester for a Dr's appointment, went to lunch, came home to my house rested a couple of hours, then went to the Funeral home in Geneseo and then went to dinner.
By this time I was so tired that my wife had to drive to Dansville to take Mom home and back to our house. Now you might say that is alot I don't think so... It is not like I was out lifting wood or digging up flowers. It was not hard labored work it was just sitting and driving and eating. That is it. But I was so tired that really at the Funeral Home I did not want to leave just wanted to put my feet up and go to sleep. That was not me ever. But now I can't do what I have done before at all. I did go out to Cleveland and those wonderful Doctor's out there basically told me that what is being done for me in Rochester is what they would do and not anything more. I have met a couple of other people that are having the same issues. Some are on a Trach and Ventilator and I am not. Sometimes I think that maybe I should be doing more because I am not as bad as those people. But the other week I had to get up at 5:30 in the morning because my Daughter and her husband own and operate a Dairy Farm so they needed me to watch their daughter my Granddaughter. I got up but on the 2nd day of a 4 day "job" I was like there is no way in hell I could ever do this. I only have her for like 2 hours and she is sleeping for like an hour and a half of that time. I can go back to sleep after she goes home but I still know I could never get up and go out to work and be able to perform any type of job unless it is to test Mattresses and I could sleep on each one for a couple of hours... I am having my 15 minutes of fame, the local paper here in Livingston County called The Mt. Morris Shopper is doing a 4 week article on me and my condition. I am glad because I feel that the only way people are going to know anything about my Problem is through the Media. I know some prolly would not agree but if you are having this type of problem we need to pull together and try to get this information out to them. This week I am going to write a letter to my local Senator that I know and see if there is a way for me to speak in Albany here in NY so maybe if I talk to the Politicians they might help get the word out. We will see. Thanks for listening... If you ever want to talk to me you can e-mail me at **** @ rochester . rr . com I read my E-Mail's like 2 or 3 times a day. If you have this problem please E-Mail me so I know who you are and we can put our heads together and compare notes too. I am going to make a Support Group page on Facebook. Once I do I will post that Title on here and hope that everyone with this type of problem will come out and join me to help each other out and support each other.... Take care and God bless you and God Bless the United States of America!
I read your recent posts on an Internet site of this year. I have the same thing that you have. I was diagnosed in Jan. of 2006. It is truly a life changing event. The doctors have not way of knowing what caused mine so they say it was due to a virus. All that means is they don't know. Soon after my learning of the illness I began to try to work out. I walked daily outside weather permitting and no real cold days without using a scarf to warm the air before I breathe in into my lungs as that is all we have. I walk up to eight miles per day and I do lift weights. I went to see my respiratory specialist last week and he said we may have a miracle in the works. He thought that there was diaphragmatic movement on the right side. I just 10 minutes ago came home from the imaging center and my right side is now functioning normally. I knew I was breathing better in the last 6 months but I attributed it to my attitude to remain as healthy as I could as I have done my entire life. I turned 60 years old 10 days ago. I have never given up and I walked daily soon after I came home from the hospital in 2006. I began my own rehab 2 weeks after getting home, despite having to be on oxygen 24 hours a day 7 days a week. I still keep and take a backpack with an oxygen cylinder in it full everywhere I go. I have a concentrator in my living room and it has been there since Jan. 2006. I use it at a rate of 2.5 lpm when sleeping.My point is, keep your emotions in check about this thing. It is human to experience the ups and down on this issue. You must understand that others including doctors cannot totally understand what you are going through mentally as well as physically. It is like breathing through straws and you get tired extremely quickly. You will fall asleep in a chair when everyone else is having a good time at Christmas because you have been active and now you need to go to sleep to get some rest. You cannot help it. It is your body telling you that it is fatigued and MUST rest. You will at time be angry with you family because you feel they do not understand what you are going through. YOU are Right About That and there is no way they will ever understand it unless it happens to them. You will pray that it does not. Ask them to pray for you and you pray for yourself. Do all you can for yourself. Do NOT let yourself become an invalid. Becoming an invalid means you have given up. I was told that I could have a handicapped tag so I could park close. NO WAY not me. Reject anything that has connotations of giving up attached to it. Because it is in Gods hands. I feel as if I was successful, one side is now functioning. The Dr's told me many times that if it did not return in 3 or 4 years it never would. Today I have proved them wrong. NEVER GIVE UP!!! NEVER
I am able check my oxygen level and if it gets down to 88% I put my oxygen on. I have been diagnosed as COPD & Asthma for a lack of a true diagnosis. I have been prescribed inhalers both a regular one 2x' p/day & a crisis one. Although I can tell you that they do not do anything. I recently had back surgery and I had a hard time waking up was confused , pulled out the IV. I finally came out of it, but it is very frightening if I have to have another procedure. I am OK as long as I do not exert. I can't walk very far or run the vacuum, ect. The condition has worsened in the 25 years since it began although I guess I could be worse and be on a respirator on a full time basis.