Neuro (ALS) question!!! Please help!

[Ashalia21]

Hi everyone,

I am a student and I am completing a research paper on ALS and working with Neuro patients. I am required to interview a nurse or someone who works or has worked with near patients. I have 9 questions to ask; if someone is willing me answer them for me along with their credentials or previous credentials that would be so helpful and greatly appreciated. The questions are as follows:

1. What do you find usually brings patients in for their initial diagnosis?

2. How difficult is it to get people with this condition to understand the severity of the situation when they are diagnosed?

3. What have you found to be the greatest cause or contributing factor of this condition? How much does genetics play into acquiring this disease?

4. What have you found to be the greatest challenge persons with this condition face (personal and/or medical)?

5. What are some practical recommendations you give your patients or caregivers to help deal with and maintain their disease?

6. Do you feel there has been a higher incidence of diagnosis of this condition in recent years? If yes, why do you think that is?

7. What are some of the most common side effects of the medications a person with this condition would experience?

8. Do your patients complain of oral side effects, if so, what type of oral side effects?

9. If you have any parting comments that you feel would be valuable please feel free to share them with me.

Thank you so much. Im sure you all remember the pressures of school! :)

[bgxyrnf, MSN, RN]

Hi everyone,

I am a student and I am completing a research paper on ALS and working with Neuro patients. I am required to interview a nurse or someone who works or has worked with near patients. I have 9 questions to ask; if someone is willing me answer them for me along with their credentials or previous credentials that would be so helpful and greatly appreciated. The questions are as follows:

I have taken care of several patients in the inpatient setting. I had the privilege of caring for one man over the course of 4 months, as he came to the end of his life and was present when he died.

1. What do you find usually brings patients in for their initial diagnosis? Generally weakness or incoordination; falling; dropping things.

2. How difficult is it to get people with this condition to understand the severity of the situation when they are diagnosed? Not hard, especially if you use the term "Lou Gherig's Disease," most people have heard of it and most realize that it's progressive and terminal.

3. What have you found to be the greatest cause or contributing factor of this condition? How much does genetics play into acquiring this disease? So far as I'm aware, they haven't figured this one out. As with most such disorders, there is certain to be a genetic component but it's certainly to be environmental as well.

4. What have you found to be the greatest challenge persons with this condition face (personal and/or medical)? Frustration of being cognitively intact while locked in a body whose muscles are shutting down to lack of nerve transmission. Without technology to assist, they lose the ability to communicate.

5. What are some practical recommendations you give your patients or caregivers to help deal with and maintain their disease? I've only done inpatient... I don't have an answer for this.

6. Do you feel there has been a higher incidence of diagnosis of this condition in recent years? If yes, why do you think that is? What someone feels is irrelevant... some basic research should provide you a data-backed answer.

7. What are some of the most common side effects of the medications a person with this condition would experience? Dunno. It was never an issue in my cases. I'm sure Davis Drug Guide could tell us, though.

8. Do your patients complain of oral side effects, if so, what type of oral side effects? No, mine didn't. They did ultimately lose the ability for oral nutrition and hydration due to the risk of aspiration. The extended care patient I had refused tubes and ultimately even IV hydration. He wanted to get it over with.

9. If you have any parting comments that you feel would be valuable please feel free to share them with me.Nope.

Thank you so much. Im sure you all remember the pressures of school! :)

My reply in bold

[iluvivt, BSN, RN]

Newly approved drug for these patients in the early stages of the disease, called Radicava.My home health agency is administering it.Not sure if you knew.