People with ALS (PALS) , at some point wonder about their mortality, how the disease will "take them". Will it be lack of ability to breathe? Or are other organs going to shut down? Or a heart attack? It's odd to have a fatal disease but not know how, or when life will end.
That's the natural order, we are not supposed to know. The fatality of ALS is 100%, but those are the percentages for everyone on this earth. Psalm 139: 16. your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. Our responsibility is live each day with love for one another, grace and mercy. Relying on the knowledge that God has a plan for each one of us and we can trust the plan is good. That's enough preaching, .
As a person with ALS, breathing is eventually an issue. The lungs can be healthy and strong but the muscles surrounding the lungs are weakened by the disease. The diaphragm is the primary organ for breathing, also weakened by ALS. If the diaphragm can still respond to some electrical stimulation there is a new procedure that will prolong or negate the need for an invasive tracheostomy. The NeuRx Diaphragm Pacing System (DPS) passed FDA approval (9/11) as a non invasive procedure that will supplement a non-invasive BiPAP breathing system. http://alsn.mda.org/news/neurx-diaphragm-pacing-system-approved-als
Unfortunately it was not an available option when I needed it. When your lungs/diaphragm are
strong you are a good candidate for ALS trials. Once they go, you don't qualify for many. My plan was to participate in a trial, I was positive that was my purpose, to be part of the solution. .
My Story:
In late '07 I had my usual appointment at UCLA. It was very uneventful and my lungs were still good, voice still strong. I get my first case of pneumonia.
Halloween '07. I have a tradition of cruising the neighborhood with the kids, checking out the sights, visiting with the neighbors. This was my first year in my wheelchair, with my monster size glass of cabernet and my blinking spider headband, no gloves (stupid). FINGERS WERE FREEZING but I was not going to stop my annual ritual of wine tasting with the neighbors. Within weeks I started with a never ending cold. By January the pneumonia set in and my breathing was affected. February we realized my breathing was not going to improve. We treated the pneumonia at home with a home health care agency administering iv's. My room had to be freezing for me to be comfortable, my poor family had to wear gloves and coats in their own home to keep from getting sick themselves. The family all thought this was the end, I was unable to get a deep breath, unable to sleep because I couldn't get enough air in my lungs and unable to eat because I could not get enough breath to chew. This was the first scare of a few. No air is a scary feeling. Ashton left a soccer scholarship in Hawaii to come home and be with me. I was thrilled to have the kids close, but not thrilled about her decision to stay and not go back to Hawaii. When she makes up her mind about something there is no arguing. An ocean is just too far away. But there was immediate relief once we knew the right questions. The next step when your breathing weakens is a non-invasive B-pap machine, this is also used for people with sleep apnia. RESPIRONIX is a good supplier. There are many designs and you must do trial and error to find one that fits. This method works very very well. Once I started getting air I got better quickly and we were able to warm up the house. With a B-Pap I was able to eat and drink as long as I could open my mouth long enough, and hold my breath, to chew and swallow. Diet became very important. I had lost a lot of weight from being sick, that's not good. Wanda and I became obsessed with getting enough calories in me with the least amount of effort on my part. Food still needed to be organic. I had been eating organic for so long I was not going to add processed food now. We became juicing experts. That was great for a while but my ability to eat was beginning to get harder. Not in drinking or chewing, but holding my breath long enough to get enough food in me.
The time came when we were faced with THE BIG DECISION. To get a feeding tube and tracheotomy? It was recommended that I get the tracheotomy sooner then later. The feeding tube was easy but if we were going to do one, we should do both. The g-tube was done 8/14 and the tracheotomy 8/15.
HAPPY 4TH Anniversary!
I want to share with you some of the trials we have experienced having a trachea put in but I will do that in the next post.
The feeding tube is the best invention ever! EVERYONE should have one. No obesity and I don't really miss food. I still watch Food Network and I don't mind people eating in front of me. Eating is now a no-brainer. The only time I miss a certain food is when it is close to eating time.
That's enough for tonight. Getting an invasive breathing apparatus is a life changing event, not to be taken lightly. I have no regrets for doing it, It has prolonged my life 4 years,which I am thankful for.
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