Feb 22, 2013
A Dear Friend of mine from the UK that has the same thing as I Bilateral Diaphragmatic Paralysis and he wrote this up as to what a person goes through each and everyday with this Disease. I hope that know one ever has to deal with this as we have had to for over a year and a half. I am trying to get this information out to the public and trying to see if the Media will help in this. The problem I am running into is that in order for the people in the media they want a lot of people dealing with this, then it would be NEWS WORTHY. That is so sad because there are people that have one side or the other and get by just fine. Then there are those who also have one side or the other and not doing so good. Then there are people like us who are doing ok with both sides paralyzed and those that are not doing so great. But what we all have in command is that we have to change our lives as well as our partners/spouses too. I remember when Saturday would get here and I would go to a Dance and dance all night long go home and get up the next day and ready to go again. Now I have to talk myself into going in the first place. I might be able to dance a slow one for a couple of steps maybe 2 or 3 times that night. Go home 2 hours later and have to rest the next 3 days because I took myself down so much just the little bit I did. I remember when I would get up at 4 am in the morning Monday through Friday leave the house by 5 go to work and get home maybe by 5:30 PM and do it week after week. Now I have all I can do to force myself to get ready for my day by 10 AM. I remember when I could get up the day of a trip to PA to see my Sister and her family which is a 4 or so hour trip get ready packed and leave. Drive there and not be one bit tired. Now I have to have help driving and when I get there by the time I get to my Hotel room I am ready for bed and I don't want to get up the next day. You see I know I can't do what I use to do but if I do it right I can last longer but that is not always true. If you are dealing with this and ever want to talk contact me. I am on Facebook, I have E-Mail and you can contact me through here. I would love to get to know everyone so I could really find out how many people in the world deal with this issue. Weather it is one side or the other or both. Then I would have a better understanding of how many people there are out there with this problem. So the next time someone from ABC, NBC, FOX, CBS, CNN, CNBC or MSNBC I can say there are ? This many people with one or the other maybe they will want to talk. I know people are probably going to say that I am taking the lead in this but I feel that the reason I have this is because a Greater Person then I said it is time for me to step up and be the spokes Person on this matter. I don't want it but I think this is the only way we might have a chance in hell to try to get some of our lives back. If you are with me say so. Contact me lets work together and find a cure. Please read my Friend Tez's Statement below... God Bless you and God Bless the United States of America!
Bilateral Diaphragmatic Paralysis
*** I can only base this on how it effects myself and what I have learned since having this condition for the last 13 months***
1. What is it? It’s a condition that affects both diaphragms to an extent where the circuit/signal between the brains via the phrenic nerve to that controls the diaphragms is either totally stopped or severely compromised. This renders the diaphragms none functional, as it says in the title "PARALYSED".
2. Causes? There are various causes for this condition. The phrenic nerve can be severed during a surgical operation. Injuries/trauma to the head, neck or spine. Certain diseases, viruses, cysts, and infections can also cause damage and have an adverse effect damaging or compromising the nerve.
3. Effects! How it will affect the patient? Firstly it may be that you fell under the weather, tired, and short of breath, weary/lethargic. Breathing will become very labored to the point were walking a short distance is a task, let alone trying to lift or carry items. Climbing stairways and inclines are out the question, Regular headaches and unable to take a deep breath. You may feel bloated when eating a small meal, or have a feeling of a sports stitch in the lower side of the rib cage. The worst for me was one night not being able to lay down to any degree without being unable to breathe at all. You won’t be able to swim as the pressure of the water on your abdomen compromises your ability to breath, Believe me I have tried it. So basically anything physical it will drastically effect. Life changing for both you and your family in many ways.
4. Visual! When you are sitting upright leaning forwards over something and even stood up, anyone who doesn't know will think you are OK as you will pretty much look perfectly normal. In these positions the weight of other organs is eased from the lungs with gravity helping. When you lean backwards your breathing pattern will change and paradoxical breathing can be evident. (This was a big factor for me).
Paradoxical breathing is when a breath is inhaled and just under the sternum below the ribcage ***** in and the upper chest, shoulders and lower abdomen expand. On exhaling it will go back to normal. Note depending on how severe your condition is the further back you recline, to a supine position you like, you will be unable to draw breath!! So imagine both your diaphragms are raised permanently in your chest cavity! This puts constant pressure on your lower lungs. (Hence your breathing capacity will be limited). The added effect on this is the blood gas exchange in the lower lungs will be compromised and can lead to other symptoms like pins and needles, bad circulation and cramps in your extremities. Sleeping can be a hazard, remember your diaphragms are your only respiratory muscle that work involuntary. If it does not work then deep ram sleep is danger.
5. What can you the patient do! Do not panic. Go and see your doctor, take with a written list of your symptoms and how it is affecting you. Ask to see a respiratory/thorax specialist. Help yourself by a good diet, posture, using breathing techniques similar to an asthma sufferer, and if you are struggling for breath, try sitting on a dinning chair leaning forward over a table and regulate you breathing. This will help open the airways and relieves some of the weight of other organs from your lungs. You could try resting, as I did, leaning forwards over a large cushion/beanbag. Remember take care of your general health as you will be susceptible to colds and chest infections. Keep a diary of events.
6. How can/will a doctor help you? They will listen to you, make notes and examine you in both standing and supine positions. They need to take note if your breathing is paradoxical or not? It may be an indication when you talk as you may not be able to finish a sentence, or your breath will fade towards the end. You may be prescribed inhalers, anti-inflamatry’s. You may be sent for a C.T., Ultrasound or MRI scan to help diagnose the cause of the condition. Lung function and blood gas test can be a useful factor in your diagnosis. Again a lung specialist may think it necessary to see if you are compatible to use a Bi-pap machine. (This is a machine that aids breathing with positive pressure that will inflate the lungs giving your auxiliary breathing muscles and body a well needed rest at the same time helping with the blood gas exchange in the lower lungs). Remember the cause of this condition is rarely found so unless the cause is known the normal procedure will be non-invasive and regular monitoring for change. Not many doctors know of Bilateral Diaphragmatic Paralyses and fewer in their profession have actual witnessed it.
Thank you for taking the time to read this.