Starting BiPaP

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Hreal85

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Hi
My dad just had his check in appointment with his neurologist today. His fatigue has been much worse over the last month and so has his appetite and he has lost weight. He has been complaining about feeling short of breath during the night but fine during the day. He was diagnosed this past January with MND only his right hand being effected but I’ve noticed him hunching his back more lately. His FVC was 82% in January but today was 50%. They are gonna start him on BiPap at night. And I’m hopeful that it will help with his fatigue and maybe even his appetite. I guess I’m surprised that he is already having breathing issues. I was hoping that the disease would progress in his limbs first (what a sad thing to hope for but this disease is horrible like that) before it effected his breathing. My dad has mentioned not wanting to be on a ventilator and I’m worried because now we are going on BiPap at night…how much longer until he has to do BiPap 24/7. He is still working full time, however the fatigue has made it difficult for him, he will tell you that he is thankful that he has a desk job and can sit down most of the day. I’m concerned he is pushing himself too much but at the same time he loves his job and I feel like if I tell him he should think about retiring and going on disability he will just eventually withdraw and become depressed.

I know it’s variable for each person but I guess what I’m looking is to see how long people who started on BiPap overnight maintained it for before they had to increase it to night and during the day?
 

affected

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It really is incredibly variable and we can't predict. We do know that starting bipap early can really help him not overuse the breathing muscles and could slow progression a little. Definitely pushing himself can speed things.
We have members here that have been using bipap for years, so it is not always a sign of the end, but is a really important tool.
 

lgelb

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He could still work a desk job on BiPAP. If it's a job he loves, I would let him do it without kvetching until he decides it's time to stop. If he works straight through, that is his choice to make. There is not nearly as much we control about ALS's course as much as how we deal. Some people want to stop and smell the roses, others want to continue as much as "normal" as they can. Either is a legitimate way to go, literally.

Best,
Laurie
 

Jimi

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It's definitely hard to call how long he will be on night use only. For me it was about 1.5 years before I needed it 24/7. I was also pretty stubborn to start using. I suffered many months of morning headaches for that. Definitely will be good for him to get good sleep. I don't believe working will speed his progression, in fact I think having purpose and something to push yourself for will help keep you going. I was still going to the gym in my manual wheelchair. Kept what muscle I had fit. For me it had no affect on the progression either way.
 

affected

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When I said pushing himself, I meant pushing through breathing difficulties. The more he can use bipap early, the less he is pushing his breathing muscles 😊 (bipap now may help him continue working far longer)
 

vltsra

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Hi HReal, my husband started on BiPap more than 2 years ago. He had the same symptoms as your dad; lost his appetite, shortness of breath and unable to sleep. Before we got him on the BiPap he actually started to show symptoms of CO2 buildup. Once he started BiPap at night, he was so much better.

He is now on BiPap 24/7. I think it was about 8 or 9 months for us. Your dad's situation sounds something like ours, the weakness started in my PALS' left hand and was just starting to affect his right hand and legs when he needed to go on the BiPap. It's impossible to say how long before he is on BiPap 24/7; each case is different. As Laurie said, he can still work using BiPap, and I think it's important to keep engaged and doing things our PALS love as long as possible.

V
 

Hreal85

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Thank you everyone for sharing, I really appreciate it 💕
 

nona

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I started the bipap at night the summer after my diagnosis, and six years later I'm still only using it at night. I worked for two years after diagnosis ; the bipap helped me get restful sleep.
 

MToole

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As mentioned, everyone is different.
I started using the BiPAP overnight around the summer/fall of 2014. I had also had severe sleep apnea. I continue to use the machine only overnight. My FVC is 18.
My progression started in my left arm. My swallowing is still normal.
Check out the respiratory webinar link for more information on respiratory care.
 

natybaez

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Hi my dad got his machine last week and has barely been able to use for 5 minutes straights. do you have any advice on how to get him comfortable with it? how was your experience?
 

MToole

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I enjoyed it immediately. What seems to be the problem?
I use nose pillows.
As long as the machine is set up right, it should just be almost like normal breathing
Don't fight it, get in rhythm with the machine
 

Jimi

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For day time I use a Philips Respironics DreamWear Nasal CPAP Mask with the nose cushion NOT the nose pillow. At night I use a Resmed AirFit F30. I have been using bipap for over 2.5 years 24/7. He will get used to it. Not really a choice unless you don't want to breathe. For me it helped a lot to read the manual for the machine and read up on the general principles of bipap/ventilators and learn how to adjust myself for best comfort. I'm claustrophobic by nature, but I had no problem overcoming that because of the alternative. You will probably need to try several masks to find what works. I probably tried about 8 different ones
 

affected

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It can take time to get used to, and the settings may need tweaking or a different mask tried. Many find the nasal pillows great.
A great way to start is in a comfy chair, watching an enjoyable show or movie.
Leave it on just for 10 minutes or so, even if comfortable, the first couple of times.
Increase the amount of time it is on as he adjusts and quite quickly it should be easy for him.
 
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