I am inspired

[gpcal76]

Hello:-D,

I am a new member, I joined 2 weeks ago but started my first posts today.
It's been wonderful reading through your posts and gaining a better understanding of what ALS means to people and how it has affected their life or their loved ones' lives.
Thank you for sharing your words of inspiration, your good days, your bad days...

I am currently a nursing student in a RN program in CA. Currently a project I have is understanding ALS and how the disease changes ones' life/caregiver/loved one's life, in all aspects. I would be so grateful if you could share your experience with me. A requirement actually is that I get feedback from someone who has been diagnosed with ALS or their caregiver/loved one. Your help is sincerely appreciated...

My email is: [email protected]
Warmest regards,
gemma
*Keep shining*

Questions I have are: (All responses will be completely confidential and shared only with my 25 fellow nursing students and 2 professors)

-How has the illness changed your/your loved ones' life? How did your family and your role within the family change?
-What professionals were involved in your/your loved ones' early stages of recovery/rehab? What did they do? Who was most helpful? Who wasn't helpful and why?
-What meaning does this illness have for you/your loved one? (Spirituality, psychosocial well-being, etc.)?
-What community resources have been important to you/your loved one and your family in helping with the rehab process?
-What concerns you most about the future?
-Who is there to support your family? How are you coping, preventing burnout? Is there respite care?
-What are your thoughts on end-of-life care? Nutrition? Respiration? Communication? If you don't feel these issues are relevant, what do you think is your/your loved ones main issue of concern?

Again, any feedback is appreciated tremendously. Thank you. [email protected]

 

[CindyM]

Hello there. I am glad you are interested. We need more knowlegable folks in the medical field! Hopefully somebody will answer your questions. Cindy

 

[hearts_and_thoughts]

Yes, I absolutely agree with Cindy (who is a wonderful moderator by the way!) that it is great to have 27 more people in the medical field obtain knowledge about ALS. May God give you insight enough to leave a very memorable impact on your fellow future aspiring medical professionals!

Mary Jo
caregiver

 

[gpcal76]

Thank you

Thank you for the warm welcome  . I’m looking forward to hearing from you.

Here’s to the good days- the days when you feel like nothing can stop you. And for the bad days – here’s to your fighting spirit. Stay strong and positive.
Every day of treatment and recovery deserves a trophy. A trophy for courage, another for determination, and one for just hanging in there. You are an inspiration.

Warmest, gemma :-D
[email protected]

Nursing 107
Patient Interview Guide
1. How did this illness/injury change the patient’s life? How has this illness/injury
impacted members of the patient’s family, did their roles change and if so, how?
2. What professionals were involved in the early stages of recovery/rehabilitation? What
did they do, who was most helpful? Who was not helpful, and why?
3. What meaning does this illness/injury have to the patient? Have they noticed any
changes in their spirituality, psychosocial well-being, etc.?
4. What resources in the community have been important to the patient and their family in helping with the rehabilitation process?
5. What concerns the patient/ patient’s family most about the future?
6. Who is available as a support to the family? How is the family coping, how are they
preventing burnout? Is respite care available, etc.
7. Ask the patient/family about respiration, nutrition, and palliative care. Do they feel it is relevant, why or why not? What do they perceive to be main issues of concern?

 

[gpcal76]

I am so thankful to Kelly for giving me insight into the life of a loved one of someone with ALS. You are beautiful, inspiring, STRONG AND COURAGEOUS individuals. My warmest thoughts and prayers from the California coast to your coast.
gemma