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thankstoo

New member
Joined
Jun 22, 2009
Messages
6
Reason
Loved one DX
Diagnosis
04/2009
Country
CA
State
ontario
City
ottawa
Hi once again. You have all been very helpful to date.

My 75 year old father is almost 3 years into his diagnosis. He has the bulbar form of ALS. He has continually surprised his doctors with his general strength. All his vital signs are very good, his limbs are all fully functional. He was golfing just a couple of weeks ago.

His issue is that his ability to breathe is deteriorating rapidly. A scope was performed yesterday and his vocal chord area is in a complete state of paralysis. He was introduced to a bi pap machine 3 months ago but still is not comfortable with using it.

I am waiting to meet his doctors to discuss the benefits of a tracheostomy but have heard that many tend to avoid recommending go that route.

If performing the trache can give my father additional months with a higher quality of life we would like him to go ahead with the procedure.

Any thoughts ?

Thanks once again !
 
Thankstoo what does your father think of the concept of the tracheostomy? I think he has to be given a clear idea of what it entails and then he has to decide. Richard's recommendation to look at Joel's site is what your father needs to do. Best of luck and I am sorry that your Dad is in this position.
Laurel
 
The important opinion in the matter is your father's opinion. What does he "say" on the matter?
 
If I was in his position I'd go for the vent.

AL.
 
My father is a very proud man. All along he has resisted any 'significant' medical intervention. Even as it became clear that he could no longer eat normally he initially did not even want to discuss the peg tube which he has now had for 18 months now. He is resisting the bi pap machine currently along with other medical requirements in the past.

Of course it is his wishes which count most but we love him so dearly and all we want is for him to be as happy as possible and have his presence that we all very much crave.

BTW thank you very much for directing me top Joel's website. All the family is currently scanning it.

Thanks, Steve
 
Hi once again. You have all been very helpful to date.

My 75 year old father is almost 3 years into his diagnosis. He has the bulbar form of ALS. He has continually surprised his doctors with his general strength. All his vital signs are very good, his limbs are all fully functional. He was golfing just a couple of weeks ago.

His issue is that his ability to breathe is deteriorating rapidly. A scope was performed yesterday and his vocal chord area is in a complete state of paralysis. He was introduced to a bi pap machine 3 months ago but still is not comfortable with using it.

I am waiting to meet his doctors to discuss the benefits of a tracheostomy but have heard that many tend to avoid recommending go that route.

If performing the trache can give my father additional months with a higher quality of life we would like him to go ahead with the procedure.

Any thoughts ?

Thanks once again !


Hi thankstoo,

We went through this with my Dad.

My Mom was scared to take care of a tracheostomy and my Dad refused to get a tracheostomy.

I knew he was going to to die then, so what I recommend they try is getting nose pillows that fit right in his nostrils during the day. My Dad is still able to talk, but his diaphragm was attacked very early on, so he was losing the ability to breathe.


So during the day he wears his nose pillows and then at night he wears a full face mask.


When they were going through this decision a new PORTABLE VENTILATOR called the TRILOGY was brand new and that is what he is using today.

Here's information on it:
Philips Respironics Trilogy portable ventilator - YouTube

Respironics Trilogy 202 - Philips

When my Dad went to his Doctor to ask him to prescribe a Trilogy the Doctor told him he didn't exist. But I knew it did so I called a local Respiratory Therapist and he actually brought the Trilogy to my parents home and got him hooked up the same day! He then called the Doctor and sent over the paper work to get the Trilogy prescribed to my Dad, so insurance paid for it.


Even though the Trilogy is a portable ventilator it can be used as a Bi-Pap, also.

I recommend getting the Trilogy now, so your parents can learn how it operates now, and then when your Dad needs a ventilator they already have it.



My Dad now has three different masks he uses with his Trilogy. He likes to rotate the nose pillows and a nose mask during the day. That way he can still talk to us and eat and drink. Then at night he wears the full face mask.

Thankfully this has worked out for them and the face masks with the Trilogy have kept my Dad alive for the past year.


Good luck to your family!
 
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