OT Students Looking to Interview

[bowser]

It appears that there are only 2 posters on this thread that actually have ALS and neither mind doing an interview. The rest of you are non-pals and shouldn't even being replying!

I can't speak for the other caregivers, but in my case I post as if I am the person with ALS because I have been by my wife's side every step of the way.

From her frustration with slight speech difficulty, to diagnose , to her using an ipad, feeding peg, seeing her turn colors as she laid on the floor of a fast food after choking

Saw her go from not speaking to a cane,a walker ,a wheel chair and as of July totally paralyzed and bedridden 24/7.

I am the one who changes her diapers and cleans her up, tries to bring a slight smile to her face.

I feel I am qualified to speak as if it was me that has the disease because I am confident I know more from experience about that disease than any of you who are recently diagnosed.

My wife would be the one posting if she wasn't paralyzed.

I will post anyplace on this forum I feel I can offer some insight and those that don't like it can tell the moderator to give me the boot.

In this final stage of my wife's ALS I have heard every "expert" offer advice.
"Experts" that don't even know what the disease is, yet THINK they have solutions.

 

[Txgirl]

I can't speak for the other caregivers, but in my case I post as if I am the person with ALS because I have been by my wife's side every step of the way.

From her frustration with slight speech difficulty, to diagnose , to her using an ipad, feeding peg, seeing her turn colors as she laid on the floor of a fast food after choking

Saw her go from not speaking to a cane,a walker ,a wheel chair and as of July totally paralyzed and bedridden 24/7.

I am the one who changes her diapers and cleans her up, tries to bring a slight smile to her face.

I feel I am qualified to speak as if it was me that has the disease because I am confident I know more from experience about that disease than any of you who are recently diagnosed.

My wife would be the one posting if she wasn't paralyzed.

I will post anyplace on this forum I feel I can offer some insight and those that don't like it can tell the moderator to give me the boot.

In this final stage of my wife's ALS I have heard every "expert" offer advice.
"Experts" that don't even know what the disease is, yet THINK they have solutions.

The OP asked to interview a PAL, not a CAL. So, you feel that you are more qualified to speak about ALS than a PAL? Wow! That says it all right there!

 

[bowser]

The OP asked to interview a PAL, not a CAL. So, you feel that you are more qualified to speak about ALS than a PAL? Wow! That says it all right there!

Yes, I feel I am more qualified to speak as someone who has witnessed all the stages of ALS vs someone newly diagnosed

comparing you to my wife...........

As you are she was
As she is, you will be.

 

[bowser]

The OP asked to interview a PAL, not a CAL. So, you feel that you are more qualified to speak about ALS than a PAL? Wow! That says it all right there!

When you are paralyzed and bedridden 24/7 and have a spouse changing your diaper, come back and we'll talk.

 

[Txgirl]

Bowser, what you do not understand about this disease is that every PAL progresses at different rates. I was diagnosed 7 months ago. I am now at the end stage! I progressed at a very fast rate. I went from start to finish in 7 months!
Do not compare one PAL to another. You are ignorant & I have nothing else to say to you.

 

[bowser]

Bowser, what you do not understand about this disease is that every PAL progresses at different rates. I was diagnosed 7 months ago. I am now at the end stage! I progressed at a very fast rate. I went from start to finish in 7 months!
Do not compare one PAL to another. You are ignorant & I have nothing else to say to you.

if you went from start to FINISH it would be impossible for you to post

 

[yankee-pete]

Moderator,
Could you please remove my post (post #22) that contains my email.

Thank You

 

[AfraidButNotAlone]

Everybody play nice.

We all have the same experiences that are vastly different.

We are all, I assume, angry with this disease and angry at its effects on us and our loved ones.

We shouldn't fight with one another.

When we disagree, it should be with gentle words and compassion.

 

[Barbie]

TX girl, didn't mean to overstep my bounds--but students are always coming on here to get Pals to talk with them, when they could simply spend time reading the thousands of heart felt posts in the forum. I was just stating my opinion, and if a Pals wants to talk to him, go for it. I was irritated, not by the original post, but by his response. I was originally suggesting he contact the ALSA for local people to talk to.

Sorry if I came off a bit snippy Pete. I don't wish you any bad will and hope it all works out for you.

TX girl, You are a pals and I am a cals and we are fighting the same fight just on different fronts. I am sorry if I offended you--did not mean to.

 

[Katie C]

Pete.. one thing you need to understand. It appears there is a professor at SJSU that I'm guessing had some kind of first hand brush with ALS because part of the class syllabus (whatever the class actually is) is to go find people with first hand knowledge of ALS and interview them. Therefor, once a semester someone finds this board asking the same things you are asking. There are major ALS researchers in this area.. why not call them. Or perhaps, if you really wanted to help, you could insert something in your paper about ALS being a hugely time consuming, exhausting issue for both patients and caregivers, who have little time or desire to be answering basic questions with little foreseeable benefit. I understand I'm kind of shooting the messenger here, but seriously... maybe the professor needs to do his/her own homework at some point.

 

[johnnyliverpool1]

carers are the salt of the earth....johnny.

 

[yankee-pete]

Pete.. one thing you need to understand. It appears there is a professor at SJSU that I'm guessing had some kind of first hand brush with ALS because part of the class syllabus (whatever the class actually is) is to go find people with first hand knowledge of ALS and interview them. Therefor, once a semester someone finds this board asking the same things you are asking. There are major ALS researchers in this area.. why not call them. Or perhaps, if you really wanted to help, you could insert something in your paper about ALS being a hugely time consuming, exhausting issue for both patients and caregivers, who have little time or desire to be answering basic questions with little foreseeable benefit. I understand I'm kind of shooting the messenger here, but seriously... maybe the professor needs to do his/her own homework at some point.

The assignment was to interview someone with ALS. It is for a neurology class. Our instructor has been an occupational therapist for 30 years and has experience treating people with many neurological diseases. She wants for us to get first hand information and experience for people living with the disease because as future occupational therapists we will be working with such people.

I have to thank Txgirl for volunteering to speak with me. She really is a great person (not because she helped me) and I enjoyed getting to know her.

The one thing I didn't understand is why people got upset. I figured if people weren't interested, they simply wouldn't reply.

I do think that all of the caregivers out there are very special people as well. You have a difficult job and you do it in love. That is awesome.

 

[Txgirl]

The assignment was to interview someone with ALS. It is for a neurology class. Our instructor has been an occupational therapist for 30 years and has experience treating people with many neurological diseases. She wants for us to get first hand information and experience for people living with the disease because as future occupational therapists we will be working with such people.

I have to thank Txgirl for volunteering to speak with me. She really is a great person (not because she helped me) and I enjoyed getting to know her.

The one thing I didn't understand is why people got upset. I figured if people weren't interested, they simply wouldn't reply.

I do think that all of the caregivers out there are very special people as well. You have a difficult job and you do it in love. That is awesome.

Thank you Pete for the kind words, it was my pleasure to help. I hope you get 100% on your assignment. I wish you luck in your future as an occupational therapist.

 

[Outdoor_Man_Nc]

I have been interviewed a few times. It is always great to raise awareness.

 

[Franklin]

I can't speak for the other caregivers, but in my case I post as if I am the person with ALS because I have been by my wife's side every step of the way.

From her frustration with slight speech difficulty, to diagnose , to her using an ipad, feeding peg, seeing her turn colors as she laid on the floor of a fast food after choking

Saw her go from not speaking to a cane,a walker ,a wheel chair and as of July totally paralyzed and bedridden 24/7.

I am the one who changes her diapers and cleans her up, tries to bring a slight smile to her face.

I feel I am qualified to speak as if it was me that has the disease because I am confident I know more from experience about that disease than any of you who are recently diagnosed.

My wife would be the one posting if she wasn't paralyzed.

I will post anyplace on this forum I feel I can offer some insight and those that don't like it can tell the moderator to give me the boot.

In this final stage of my wife's ALS I have heard every "expert" offer advice.
"Experts" that don't even know what the disease is, yet THINK they have solutions.

Margaret passed away this morning at 7:15.

Two years, 9 months , after being diagnosed due to a slight speech problem.

Say a prayer for her.

Thank you ..............bowser/Franklin