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New member
Mar 18, 2007
Hi. This is my first time here. I'm doing research on ALS for a production of a new play. I'm particularly interested in the relationship between caretaker and patient. I wanted to know if anyone would be willing to share any of their experiences caring for someone with ALS - OR - if you're someone with ALS, your experience with a caregiver . . .

I have a few specific questions: 1) What are some specific Physical therapy exercises you do with an ALS patient? 2) Can you share any stories of how the relationship becomes more complicated or challenging in the final stages of life? How does the role of the caregiver change (if at all)? How does the patients outlook change? 3) Any other stories you want to share about caring for someone with ALS.

Thank you.
Hi Mike 33. ALS seems to be coming out of the closet. You are the second person this month looking for information for a new play. I'm sure someone will give you information but could you tell us where you are and are you the play write or just research staff?
I suddenly feared that maybe this was not the right place to ask this question. If this is for some reason an unwelcome question please let me know and I apologize. . . But, here's a little bit more about me that I should have put in my fist posting:

I'm an actor working with the Tectonic Theater company based in New York City. We're in the process of workshopping a play where one of the characters is diagnosed with ALS so we've all been learning a lot about the disease. It's been a big surprise to some of us to learn the story of this "orphan disease" and we've realized how important it is to communicate it accurately.

I've read a good deal of literature about the progression, symptoms, and research for a cure for ALS, as well as some stuff about the process of palliative care. But I wanted to talk to people with first hand experience about the day to day relationship of a caregiver and a patient.

My interest is in this are specifically because my role in the play is that of a nurse who becomes a caregiver for someone with ALS.

I understand that these relationships are private and personal so I only ask for any input that people may feel comfortable giving. It's all useful.

thank you.
Hi Mike. I have been speaking with Moises and thought you may be from the same group. We'll try to help if we can. I am familiar with your part in the play. You could ask him for my number if you'd like.
thanks for the help Al.

By the way my name is Lucas. Mike is the characters name and was the first thing that came to mind when I had to make a screen name.

I'll be in touch. . .
And Yes I am working with Moises. He actually referred me here.
Having cared for a friend with ALS for more than four years I may be able to give you some insight for your part in the play. There are many others on this site who probably have tons of useful information as well. Feel free to send me a private message if you'd like to talk.

Thanks for helping to bring more attention to a 'forgotten desease'.

Another idea I just remembered, if you care to look back to old posts from the beginning of November 06 under the tread 'caregiver/patient relationship' you will find several conversations I shared with another friend/caregiver during the final stages of my friends life.

Hope this helps.
Hi Lucas. I think a play is a great idea! I'm not at a place where I need personal care but watching my Mom's hospice team gives me lots of ideas of what makes a good relationship. If I ever need anyone, I will look for someone who handles unpleasant and undignified situations with a little light-hearted humor served up with a healthy dose of respect. For example, when changing my mom's diaper, Phyllis will say, "Don't be afraid to lean on me as you stand. I'm short but tough!" Once during the same procedure she even said, "There! We are done! Now tell me, was it good for you, too?"

I think this type of attitude is even more important with PALS. Most people on this forum tend to be up-beat and positive in spite of very trying and very sad circumstances. A family member or close friend watching their loved one suffer cannot always keep up this demeanor. The real angels in this world bring a smile to the stressed faces of both PALS and CALS.
Thanks for the replies so far!

CindyM, Phyllis sounds like someone you can lift your spirits and make you feel well taken care of. . . What a gem!
You are right, Mike. Phyllis has a real skill with someone who cannot communicate and barely understands. My Mom doesn't always get the joke but her face lights up when Phyllis comes in the room. For my money caregivers are special folks doing an impossible job during very sad circumstances. Cindy
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