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New member
Dec 15, 2005
Hello Everybody again, tonight is one of those night I can't sleep and I can't stop thinking why and how everything has changed so rapidly in my father and my life. he is 75 year old and always was very healthy, except that 15 years ago was diagnosed with Jacksonian epilepsy and for almost 15 years was on dilantine and phenobarbital. he would take his pills at night for 15 years and everything was under control. no singe or attacks of epilepsy. Nov 2004 he was complaining of some falling and disorientation in the morning. When he went to his family doctor at that time, he even said this is your age and anybody can feel the same way. Any way falling got worse until May 2005 and finally in July 2005 they diagnosed him with ALS. Breathing was good, speech was Good and even he didn't need Walker at that time. but now after 6 month his legs and hands don't move at all and breathing started to have problem.
why so much fast?
is any body on dilantine or phenobarbital who have the same progress ?
we are booked for sleep study for second time again next week. Because the first test shows he is not breathing good at deep sleep. what does this mean ? is it end of the tunel ?
still I'm holding there and refusing to put him in a hospital or nursing home, but what if he needs O2 all day long? is anybody with O2 who is living at home?
shocking or coughing during feeding has happened couple times, is it worse for someone with breathing problem?
why someday I pretend noting is wrong and I invite people over and some days I even refuse to go anywhere ? am I going nuts or what?
sometimes I feel guilty why I’m not taking the advise of different remedies which comes from friends and sometimes even though those remedies is not working still I put it to try ?
I really appreciate if anybody can answered any of these questions, thanks and God bless you all !
Hello Azita. First of all don't worry about your father having to go for a sleep study. If his breathing is bad sleeping his carbon dioxide levels will increase and they will suggest a Bipap machine for him to sleep with. Depending on who his doctor is he may be sent to West Park Rehab Center. They have an excellent program to teach you how to use the Bipap machine. It pumps air into your lungs under pressure and stops to let you exhale and breathes for you again. I have been using it for a year now and it is great. It doesn't use oxygen just the air in the room is pumped in. Most ALS patients don't require oxygen unless they have pneumonia or some other lung problem. They don't recommend using Bipap more than 18 hours per day. If you need more then you need to be on a ventilator. I have met a few people on the vent and they are quite satisfied with their quality of life with it. They have to have it on their wheel chair when they are moving around but they can go most anywhere. It's all about quality of life at that point. I always said no way I wanted to be vented and trached. Now I'm not so sure. Death does not seem like a good option at this time. If I need a vent I might just take it.
Who knows maybe they'll come up with a cure while I'm on the vent. If I'm gone because I refused help then I'm gone. Who knows. Live for today. That's really all we can do .
hi Azita & Al
This was posted on a UK site and I though it may be of intrest. I have met a number of MND(ALS) people here in the uk who have have breathing problems resulting in thier quality of life being affected. I think it is concerning how medical care can vary from hospital to hospital.


New research shows treatment offers better quality of life and longer survival for people with MND

20 January 2006

A relatively inexpensive piece of medical equipment could extend the life of someone with Motor Neurone Disease by several precious months, according to UK research published this week.

Half of people with MND, a fatal disease that attacks the nervous system, die within 14 months of diagnosis. The one drug licensed to treat the disease only extends life by two to three months.

But a study published in the February edition of Lancet Neurology shows that a simple ventilator pump and face mask can extend survival on average by more than six months, and also significantly improve quality of life.

Non-invasive ventilation (NIV) works by helping people with MND who have weakness of the respiratory muscles maintain adequate blood oxygen levels. It brings about a restful night’s sleep by helping people with MND clear their lungs of carbon dioxide build-up. The study shows that people’s quality of life is better as a result, and that they also live longer. In some people, NIV can prolong survival by several years.

Dr Kirstine Knox, Chief Executive of the MND Association, said: “It may not sound much, but six extra months is a long time for someone with MND and their family.

“This a significant move forward in our understanding of how to treat MND, and I hope doctors take note and prescribe NIV, where appropriate, to their MND patients.”

The results have been published by researchers at the University of Newcastle-upon-Tyne, led by Dr Stephen Bourke, Prof John Gibson and Prof Pam Shaw, after they completed the first ever randomised controlled trial of NIV.

Don Setford, 76, of Hayward’s Heath in Sussex, was diagnosed with MND in 2003. He has been using NIV for over two years, and said: “I’d been unable to sleep at night and was waking almost 40 times an hour. I was not taking in enough oxygen and not breathing out waste gases properly. As a result I felt dreadfully ill. It was like one of the worst hangovers I’ve ever had, every morning.

“I started having hallucinations during the day because I wasn’t getting enough sleep. I couldn’t get my head straight, and without NIV, I’m not sure I would have managed. I probably would have given up by now.”

The MND Association, which part-funded the research, will now be urging the National Institute for Health and Clinical Excellence (NICE) to consider recommending that NIV is offered to all MND patients.

Sarah Fitzgerald, Head of PR and Media
01604 611840 or 07831 349382
[email protected]

Notes to editors
Non-invasive ventilation (NIV) is also sometimes known as non-invasive positive pressure ventilation (NIPPV).

Full reference of published research:
The Lancet Neurology, Volume 5, Issue 2, February 2006, Pages 140-147

The Lancet Neurology, Volume 5, Issue 2, February 2006, Pages 105-6

Thank you very much for all the information. Belive it or not, I get the most out of this site. It is wonderful to feel that all of you wonderful people are there to support and help.
God Bless all of you and all my praying is with you.
Hi Azita. I also forgot to mention my brother in law who has emphysema and uses oxygen 24 hours per day. He has a generator about the size of a portable TV to pump O2 into a hose that can be up to about 80 feet and into his nose canula. When he goes out he wears a small back pack with a bottle of oxygen in it and a shorter hose. He goes all over the place with it. The big machine even fills the smaller bottles. ALS patients don't usually use oxygen but if they do need it it is not a problem. Hope this helps to put your mind at ease.
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