lgelb

Hi Laurie - I wanted to THANK YOU for your valuable input on my DIHALS post and for the recommendation. My lower bilateral NCS/EMG results were: 1.Moderate sensory demyelinating polyneuropathy 2.Normal EMG of lower limbs. I have since had an upper NCS/EMG performed. Neuro said he needed to study the NCS results but told me the EMG needle sticks (arms, hands, back, neck) looked good with no fibs, sharps or fasics. I'll have his report in a few weeks. It seems that this completely points away from ALS. My lumbar and brain MRI's were both completely normal as well. With that, I am taking your advice and seeing a highly recommended Rheumatologist in the Dallas area. Hopefully she can help me nail down a diagnosis (post viral/Fibro?). In the meantime, I am walking, stretching and concentrating on getting my vitamins through good, colorful, fresh, healthy food.

Thank you for your response. My desperation as well as my PALS seems to grow every day. His masks never seal correctly. We have tried so many. Ithe is getting harder to make adjustments due to his breathing getting worse.

Hi Laurie, I'm responding to your inquiry regarding my background and why I joined the forum seven years after my diagnosis. As you know I was diagnosed in 2009. I'm currently in a power wheelchair and I use mouthpiece ventilation during my waking hours and AVAPS and the mask while sleeping.
I stopped working as a physician at the end of 2011. I had specialized in asthma and allergy. I was a professor at a university hospital for many years until I went into private practice.
Over the years I have gained a great deal of management experience and knowledge in dealing with ALS symptoms and disability. I began to realize that many of the PALS that I had talked to needed more support and information and that I was in a position to be of some help, and so I did.
I decided to join the ALS forum to share what I've learned in the hope that it will be helpful to others and also to continue to learn from others in how to best manage ALS problems.

Best wishes

Eliot (ehd42)

HI Laurie, I have a question if you don't mind. My PALS had her clinic today, she's my close friend. They told her FVC is at 47% and she said if she wears a "vest" it can get better. I've been reading here for over 3 years and haven't seen any real discussions about a vest, other than recently on one thread when the comments were along the lines of don't go there. i will see her tomorrow so I will ask a bit more (she likes to talk about it). I'm more surprised they are not pushing the bipap yet, but what do I know. I do know that FVC doesn't improve but can vary based upon seal etc. any idea what the "vest" could be? And as others have said, than you for still being here after your own loss.

Hi, I just wanted to thank you for all of your responses on everyone's posts. You are always such a helpful member to everyone and it's really appreciated. Thank you!

Hi Laurie

Thanks so much for your response to my BiPAP issue. I sent the settings back to the respiration therapist to confirm that everything was correct and he confirmed that they are set according to Johns Hopkins direction. Since I am brand new to this machine I won't argue with him. Today, however, I will bring the machine outside and use it for 30 minutes. If the smell persists then I will ask him to come and check it out. If the smell is not present, then I know it has something to do with house smells.

Thanks again for your assist -- I always pay attention to your comments on posts because you are so knowledgeable and compassionate.

Best,
Bill

Hi Laurie

Here are the settings on my BiPAP machine:
Mode s/t
AVAPS off
I PAP 10.0
E PAP 4.0
BPM 10
Ti 1.5
Rise Time Lock On
Rise time 3
Ramp Time Off
System one Humidification off
Humidifier C3
Tubing Type lock off
Tubing Type 22

There are several other settings, but they appear to be for the machine itself.

Please let me know your thoughts. The smell is driving me nuts.

Best,
Bill

Hello again. I first want to thank you for your previous advice. We went to Stanford University in CA, but I left with more questions than answers...and yes, my husband and I tried our very best to ask. We went in prepared, but somehow it "didn't work." I know that you are very experienced and may be able to point me in some direction; I feel totally lost and I'm physically falling apart. (I guess time will tell, but I have a nine year old daughter...). Is there a way I could send you a question without sharing with everyone? Thank you. Lea

Hi Laura- I was wondering if you have any advise on settings for a Trilogy. My mother was diagnosed w/ALS a few weeks ago and given a Trilogy machine but is having difficulty adjusting. We moved her to a nasal pillow last night which helped but the airflow seems to be keeping her awake. Thanks in advance for your help. [email protected]

Hello, Radford University's counseling psychology dept has a survey out right now to learn about caregiver's counseling needs. Is it ok to share it on the forum? Thanks for your help

Hi Laura I am fairly new to the site and I am learning this site. I have seen you are very up to date on drug development and trials. I was curious to see if you have heard of any good news on the MicroNeurotrophins and the GDC-0134 at Mayo and the drug that was just given orphan drug status Herantis out of the University of Helsinki? I truly want to be in one of the trials but am reluctant to jump in (so to say). I value your opinion. Please have a great day. My email is [email protected]

hi Laurie my e-mail is [email protected]

Hi Laurie,

First of all, thank you so much for doing what you do to help all of us dealing with this disease. Your knowledge with regards to ventilation is such a blessing to those who suffer with breathing difficulties.

I am having issues at night with my Trilogy. I am not sleeping well, tired during the day and waking with headaches. I've recently started swallowing quite a bit of air during the night which is causing me to belch. There's also times when the air is blowing out the sides of my mask. All of this leads to me removing the mask in the middle of the night. I can't help but think that there are problems with the settings and I was wondering if you would be willing to take a look at them. I've taken photos of them and can send them to you. If it's easier to do this by email, you can reach me at [email protected].

Thanks again for all you do.

Wes

Hey Laurie I could really use your help in setting my trilogy

Hey Laurie

I need some advice with NIV settings. Tom says that when he starts to go to sleep and his breathing slows down, the ventilator does not give him any air. We had the respiratory therapist back and she adjusted some settings. It did not, of course, happen when she was here but then, of course, Tom was not falling asleep. Anyway, here are the settings if you can help:

Ventilation Mode PS
PS 8.0
Safety VT 450
PEEP (EPAP) 3.0
Rise Time 300
PS Max 20
Resp Rate 10 per minute
Ti Min .8 Sec
Ti Max 2 Sec
Trigger Medium
Cycle Auto

I did some research and thought that maybe the Trigger should be adjusted to Low but since I don't really know what I am doing I thought I would see what you think.

Thanks in advance,

Sandy K