breathing problems, any help?

[maryam_rastkar]

hi
my father's lost lots of muscles specially around his chest
he's got lots of breathing problems
actually it is hard for him to breath so that he cant even talk properly
i wonder if anyone can help

Maryam

 

[Danijela]

Hello,

can he access a non-invasive ventilator (Bi-pap)? A lot of people on this forum are using them, especially during the night. Has he seen a breathing specialist? (pulmonologist) Regards, Danijela

 

[Blackpool]

To make him a little more comfortable,put four or five pillows to prop him up in a 30 to 40 degree position, laaying flat is one of the hardest things to do.Hope you can get a bipap for him,do you have any specialists in ALS like the Als society? ho-e you get help[ for him soon.

 

[Blackpool]

Sorry for the typos fingers a little stiff this morning.

 

[BarryG]

Hi Beverly, I know what you mean about the stiff fingers, it happens to me all of the time when it is cold. It is 0C here today and snowing so I guess winter has arrived in the great white north.

I have a question, when you got your bipap where/who did you get it from? ALS Association? AADL? Or did you have to buy it yourself?

Stay warm
Barry

 

[BethU]

Maryam ... his speech problems could also be bulbar symptoms (those affecting head and throat). When my speech started deteriorating, I was gasping for breath all the time, which went away.

Has the doctor done a lung evaluation? He definitely sounds like he needs the aid of a BiPap machine, which does the work of the chest muscles in "working" the lungs. It improves breathing and also rests the muscles.

 

[Blackpool]

I got it from als society when I went to see Sonya at the Misacordia Hospital. Winter is upon us also snowing like crazy, icy roads 0 degrees.Thankfully Grandpa drove the grandchild to school for me and her Mom will be able to pick her up.Keep warm Barry. Beverley

 

[KeeKer]

-4 tonight high tomorrow 0. Snow for the next four days. It's white outside here too.

 

[maryam_rastkar]

hi blackpool
"pillows" was a really good idea
thank you very much
unfortunately we havent got any ALS clinics or societys ...

 

[maryam_rastkar]

hi bethU
i think so, he needs a bipap , but you know, it's very expensive ...
i cant afford it .........
we just tell him not to speak ,
i am really devastated

 

[maryam_rastkar]

good for you people
you can get whatever you need from the society
we have no special place for pals here
we should watch them as they suffer

 

[tdamess]

so sorry to hear this..i do not know the meaning of iri where is this

 

[maryam_rastkar]

Islamic Republic of Iran

 

[tdamess]

thank you , i wish there was a way to help do not want anyone to go with out , of things they need....maybe some one here can help us get one and i will pay them the cost of shipping one to you but you need a doctor to set it to the right settings for him this is sad can anyone here find a way to get one ....please let us know...i will help any way i can

 

[maryam_rastkar]

OMG you are really kind and friendly
thank you very much tdamess,
that's very kind of you
my father is a doctor -gynecologist-
and this makes him much more sad because he knows what's happening to him