Don, I have read your threads and they are heartwrenching. My prayers are most definitely with you. Is there anyone that can stay with you at night until you get your machine? Keep the faith, my friend. There are so many here on this forum that are praying for you and care, as well as God, who is with us always (and ALL ways)
I cant begin to tell you how important your strength is to me - you give me so much faith in those PALS to fight this bastard of a disease - I am so proud of you - hang in there - sleep and breath well!
I will pray for you and your strength!
I am, should I say fan, of angelman, too! He is such a sweetheart. This is one thing I cannot understand about als, it always strikes the best of people. Angelman, I have been all along, and will be praying for you!
Don, I'm praying for you, praying that God help you find the strength that is within you. Please keep us updated. I don't know what the #'s mean that the PA told you but I know we'll all be happy when you get the machine. Hang in there!
May the grace of God be with you and may his strength and mercy fill your heart, mind and soul. Do not be afraid as we all are with you and we send you peace, love and support.
Gina - you and yours are held dearly in these prayers -
May all PALS / CALS rest well this evening.
Sweet dreams - may the breath of God fill you ALL
May God Bless you Gina.. Thank you Linda, SWMN, kmgy, Irma & ilgal.
You all are so kind and so full of love and caring and keep from crying after had read this - I would say I'm speechless - but as most of you by now that is never really the case .. they are tears of humble joy and greatfulness - I will be receiving my machine tomorrow thanks to your prayers - I am certain of that - so just one more night to go. Gina, I am just so touched that you would start this thread for me... you all are so kind and truly I cannot stop the tears from rolling down my cheeks... I actual feel your love and concern and prayers reaching me even though you are hundreds and some thousands of miles away - it is as if you were here in my home holding my hand or hugging me. I actually don't have the words... Thank you so much - each and every one of you. It has been a very long and strenuous day, I will be getting my machine tomorrow - I explained on my post. I will sleep well and in peace tonight due to your outreach for me... Goodnight my precious and friends in God's love and light.. I just can't get over the overwhelming rush of emotions I am feeling... thank you.
Don! Wherever you are we are all just waiting to hear and the prayers are still coming your way!I am praying that you are just maybe sleeping with your new machine and having such a wonderfull deep sleep that you need so desperately............we are just all so anxious to hear from you!.......Gina
I just copied and pasted this from 'Starting to Sink In', pease forgive me, but it is late and I must sleep now - Thank so much for love and prayers - I truly could not live without them..
Hello to all - and thank you so much for all your prayers and support.
I went and picked up my machine and discovered alot of information that I had never been told before... Apparently I do not have Severe Obstructive Sleep Apnea, I have this new thing called Central Sleep Apnea - So of course I asked them - What is the difference? Well it turns out when I fall sleep my brain completely stops telling my diaphram to breathe. They did their best to try to and explain to me - and they were honest enough to tell they really were not sure... I have this new type of machine that tries to regulate my breathing when my brain no longer tells it to and start to go into a dream state or "unconcious" state. They said it has a memory card that I or they or the Mayo can choose to read at any time. They said this machine is new technology and was just approved in the states but their is another machine that the Mayo might put me on that is even newer and designed specifically for ALS patients and neurologiacal disorders. I tried really hard to understand what they were talking about, but I was tired and drove a long ways to pick this up..
I had some what of an "episode" when I got home. I did stop at the pharmacy, had to pick up distilled water for the machine and some prescriptions.. But when I got home I was dizzy, could barely get the stuff inside the house, thank my Mom's friend came over at the same time and he helped me get the stuff inside, I be came so weak and could barely breathe - looking back I think it may have been an asthma attack - I lost all my strength, he had to help get undressed, pick my legs up for me, and all this started to make me panic more, I started crying - I was just so weak, I could barely hold a cup to make my medicine, could not move my legs on my own - and it just frightened me to death! My meds finally kicked in and I did use the Advair, but wished I had something stronger. I did finally, with much help from my Mom's friend and my Mom, get the machine set up and started... It was easy to adjust to and only kept it on for about hour. Like I said it was like an "episode" - my strength did come back (what little i have left ) and later I was able to sit up and drink more fluids.
I did sleep the night with the machine on - but I had the same reaction from the sleep study... I slept all day Saturday in and out of consciousness until 8:30pm, my Mom the poor thing as sick as she is had to care for me and my 'episode' just scared her to death! I was able to eat a pureed dinner and now feel normal (such as it is ). It is late here 12:45am, i will take my meds and put the machine on and just pray tomorrow will be better - I am terrified that I will not be able to work on Monday - and that is just not a possibility! Has any one else ever had some type of reaction to a BiPap machine? Please share with me? This is the only that will sustain and prolong life - but I must work Monday morning, my Project Manager's Grandma is sick and let him go to Illinois! He won't be back until Wednesday - I MUST work Monday - I have three crews out there! I'm sorry, I am just starting to panic.. I will take my meds, sleep with the machine and pray for the best.. Hopefully you will here from me early tomorrow.. Goodnight my friends.
Hi Don! We were worried about you! I am sure you will get adjusted to the machine. I am praying you will. God, that is scary what you said about the brain. My son used to tell me all the time that he dreaded to go to sleep, and I used to tell him that sleep is very important. My poor son did not want to worry me, there were a few things that he kept from me, bless him! Don, take care, and God bless!
Hey Don, Glad to hear you are back and well equipped. relax, sleep and enjoy breathing today. Do not waste your energy worrying too much about tomorrow and when tomorrow comes, you will be ready to work. Use today to get your sleep / strength back.