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Active member
Sep 30, 2007
Tampa Bay Area
Hello to my beloved friends, I honestly don't know where I would be without you... "Scared and Confused" was getting just way too long, so I thought it would be best to start a new thread, I hope and pray you will find this one...

Yesterday my Dr's PA (Physician's Assistant) called me because my Dr had to run home (out of the country!), and he didn't think it could wait so he has been in contact everyday regarding me (comforting - sort of?). Honestly I can't even remember most of what she said - it was the tone of her voice that struck me the hardest I think. She said it was imperative I begin therapy asap - I am one step below being on a full-time respirator.. I asked how that was possiple when I am still functioning and working? She could not answer that one - something about breathing being a voluntary muscle something or another I can control it myself while awake - but when asleep, I all but stop, just gasping.. she said it is associated with the later stages of ALS and apologized for having to be the one to explain that to me. She was not aware that I had not been to the Mayo Clinic yet because of course that was the first thing out of my mouth! She apologized again and said she could be mistaken and that she was going by the readouts of my study. But it was that tone in her voice that I just could not and cannot get out of mind, thoughts and every other part of my mind body and soul.. She just changed the subject by explaining the details of what she was going to order and demand I get, I guess the pressure something was 20/17 - she actually said that 3 times in a row like it was unbelievable or something - (some input from ya'all would be greatly appreciated regards to that) - it had to "Auto-Servo" (I think that was the word, like I said it I was foggy by then) had to have a "Backup Rate" and "Ramping up to 60 minutes", I told I had no idea what she was talking about! I guess the DME people will help explain that in detail... She kept apologizing for the Dr not being here and so on and so on... She then said hopefully I would have the machine thingy by the end of the WEEK! Today I so wish I lived in Canada - but have been born and raised in Florida - it would only last about day - maybe two! :) no offense to my great PALS and CALS from the Great North Country - but below 40 degrees and I think I'm dying of frostbite! I could not logon last night, I just could not even imagine what I would say or type... I got up this morning and went to work and tried really hard to fight through the day - and I got through it. I feel like I will never be the same again. In my mind I was really trying to completely ignore everything my body was telling me. My heart has known all along - but the mind is a very powerful thing (so I've been told :confused: ). I still hold a little bit of hope that just maybe, just maybe the might be some kind wierd vitamin deficiency or freak tumor somewhere they can just remove and all in the world (at least mine) will perfect again... But seriously, I might be one smart cookie - but my mind ain't that strong! A deep deep sadness is creeping inside me that I just am not able to out think or wish away. That tone in that woman's voice spoke just volumes to me inside. PA's down here in Florida normally know a lot more about their specialties than the doctor's they work for... But here I am in the 'States' - at home without the machine - because it has to be cleared through insurance company! I have the best Policy money can buy down here and it still stinks. It is really sinking in. I am scared. I need the Mayo to give me a time-frame so I workout arrangements for Mom and my Corporation... I wish you all lived a block away from me... I am almost 40(5/1) and lie here in tears... I'm sorry, I'll logon again later...
OMG Don,I so wish you lived in Canada right now too!If only thier were some way i could help you.Your post is so heartbreaking!I cannot imagine the mental anguish and shock you must be feeling right now.I wish that i had some answers for you.Im sure that the answers will come shortly as thier are so many on this forum who have come to care for you so deeply!You are such a fighter and so very brave!Do not give up hope please !The anger i am feeling right now is so overwhelming i am angry for you i am angry at the MAYO clinic & the insurance company & your doctor for not having you admitted IMEDIATELY!God bless you my dear friend and thier will be so many praying for you tonight im sure the sky will light up around you!......Gina
US Healthcare BS

I am so sorry Don - they are so wrong to treat you this way - though it seems here in the good ole USA, the Docs/ & insurance is enough to take the life out of anyone!
You deserve this machine ASAP! they need to get on it - - they did the same to my PALS friend and I FLIPPED out! got his wife to call and FLIP OUT too - they got him in FAST after people Bit#$ed!
I hope you are able to get your machinne faster - A LOT faster!
I so want you to continue in your work - you give so many faith and hope!
I would do anytghing to help you get a machine!
Waiting for clearance form insurance/
That is BS - they can give you the Damn machine and if they don't get it cleared - send out the F#$%$#ing repo man to rip it off your face - those jerks !

I'm sorry - I have had a rough day emotionally w/ regard to my PALS - and now to see you, don, getting jerked around - it's too much!
ALS sucks - but this damn health system makes it all the worse!

All my prayers - keep breathing - relax - and find someone to flip out for you - I WOULD - and I'm good at it! !
Thank you so much Gina and SWMN: I was just trying to stay up and hang around - actually just bought somethings off a website that GrampAL suggested...

I was feeling so alone and just really needed to hear that someone else out there was sharing with me my pain - I'm sorry if that sounds a little selfish.. I can now go to sleep tonight with tears of joy in my eyes knowing your prayers are enveloping me.. thank you thank you thank you - good night my precious friends.. :-D

unbelievable, i am in shock after just reading your post. I cannot believe the pa called and told all of this to you and expected you to take it all in/remember it all. She should have had you come to the office, or get you admitted to a hospital or something until they can see you at mayo, or until they can get a machine to you. After all of this, i cannot believe mayo will not get you in immediately as an emergency. I wonder if the als clinic at mayo (assuming that they have one) is aware of the severity of your current situation. I doubt they are. I know that when my father was finally referred to the als clinic, they could not get things to him fast enough - and it had nothing to do with insurance (although he had it), just that they knew he needed a machine asap to feel better. prayers and thoughts are with you. seems to me that none of the specialists are talking to each other and you are the one suffering. sorry for my rambling, but i really feel for your situation.

Don, I just read your entire post, and it saddened me big times. MAY GOD BLESS YOU! Lots of prayers your way. I hate this damn disease!

Don- I am sitting here trying to think of some way to solve this. I know the clinic in Clearwater (or was ti St Pete?) said yu needed to go to the Mayo but coudl you call or email the Doc who told you that and give him your results? Maybe he can jump-start the Bi Pap.

Don't be submissive, Don. I know it is hard to make these calls when you feel so ill but this is serious. You need to be the "Squeaky wheel" right now, or find somebody who can do it for you.

I went through and read some of your prior posts and see that you did go to an als clinic and they had you cancel your first mayo clinic in november. ugggh. Maybe you should call them with results and get them to help you - although i know you have a bad taste in your mouth from last time you were there.

Some good news...

First - thanks to all of you for such incredible support, it gives me much strength and heals a little of the pain in my heart.

I will be getting the machine tomorrow - so just one more night to get thru.. The DME company called me to set a time to come with the WRONG machine! Well Cindy you talked about being the 'sqeaking wheel' - Let me tell ya, you would never want to be on the end of my wrong side - I just about lost mind with this snotty girl on the phone telling me that was what the doctor ordered for me! The poor thing was in tears and hung up on me! I didn't get to be a CEO of a corporation for not being able to get things done! I got on the horn to my Doctor - the Sleep Study Clinic - my Insurance Company! within an hour it was resolved! I did try to call back and apologize to the poor girl who had got the brunt of my rage and panic, but she refused to talked to me and honestly I can't blame her, after all it wasn't her fault, she was just reading to me what she was given, I did ask her manager to please ask her to accept my apologies for me.. I just felt fault awful after the fact :oops: But they were going to bring me some cheap Cpap machine that was not what I needed or what my Dr's office told me they wanted me to have... I just went into action out of shear PANIC I think and will have to admit I probably went somewhat overboard but this my life on the line and I know this machine is the only thing that is going to extend it, at least for a little longer.. My Dr's office called me back after it was all over and explained to me that if I hadn't freaked out I would have been in serious trouble, I guess this thing is going to be a full ventilator, just without being incubated. So in the end I did the right thing - but in my heart I know I certainly could of handled it better. As for the Mayo Clinic - I can accept the 21st - it is only 11 days and I need that time to get prepared at work, for my Mom get all my records together - the PA said my Dr will be back tomorrow and she will have all the results of all my test and records and including the doc's final notes ready for by next Thurs, I will be leaving on Sunday to head to Jacksonville..

So just one more night to get thru - and guess it worked out well anyway, it will give me the weekend to adjust it to so hopefully I will be able to adjust and get back to work on Monday without skipping a beat - hopefully... I just hope and pray this one more night will go well! :)
DON,BRAVO!Just one more night!I am so glad you got it all straightend out!Wow could they screw anthing else up ?I wouldnt worry too much about the snotty girl she probably was told about the situation after the fact and with your apology and all she will understand.!You are a real tiger when you want to be and a fighter i have a deep suspicion that your gonna be around a long time !just remind me never to get on your bad of prayers for you tonight!......Gina
You will make it Don, the love and caring of all the CALS & PALS will get you Thru. My prayers are also with you. Norma
Your Doc was right. You did the right thing to insist upon the bipap. That CPAP would have overwhelmed your chest muscles and forced too much oxygen into your lungs. On top of everything else, you don't need too much CO2 in your system. Please let us know how this works out for you! Cindy
Strange reaction - is this normal?

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.
A Brighter Day?!

Good Morning to all - I refuse to stay in this bed all day, so I will start out slowly by taking my Mom out to breakfast and basically take it from there. Today I definitely feel better than yesterday, at least physically. I did spend a little time on the internet looking up Central Sleep Apnea, the most informative was to be honest all the others were just plain scary.. If anyone visits that site and notices the squiggly lines - mine is the one on the very bottom - it looks just like the one they showed me Friday from the results of the sleep study. This new machine is supposed to help level it out and make it look like the first squiggly line. Well I'm going to get up and try to start my day - wish me luck, and I'll talk to you later, hopefully all will go well... and I just can't thank you enough for all your prayers... May God bless you all.
Don. My buddy. I do hope you are better today. The extreme weakness you felt was likely due to lack of oxygen in your blood stream. Either that or too much Carbon Dioxide. Either situation causes lots of medical problems, some of which are quite serious.

Thank goodness you have the machine. You should feel lots better every night you use your machine. If it is working correctly, you should wake refreshed, and have the energy to do normal stuff all day long.
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