Things you'd like to say to people, professionals, and relatives about ALS

[KimT]

Still in the process of compiling all the wonderful information. Had a few physical setbacks but so be it.

I've published textbooks in the past and called a friend who is an English professor and published author to help me put everything together. It has been very emotional for me. Between us, we have many contacts and resources by which to get our message out.

The outpouring from PALS and CALS on FB has been amazing. Medical professionals (I have quite a few in my family) are joining in. So if you think of anything else you want to say, please keep this post alive.

 

[KimT]

I've been compiling some responses gathered from the local ALS support group, a FB support group, and you dear ones here. Many of the comments were much like others, so I tried to paraphrase while keeping the integrity of the post. Another author stopped by this afternoon. He has a strong interest in helping develop a manuscript and also a book. We bounced around some ideas for both the manuscript and book. We both thought it would be better received by people who can influence change if it were very personal with real faces and real stories from both PALS and CALS. I've had over 300 responses from various PALS and CALS. I'm attaching a very rough draft of just a few responses I've received.

I've published books in the past but they were textbooks and I had the backing of major publishing companies. This project is important to me. Word is already out in my circle of professionals and I won't be shy to ask for their financial support if the manuscript turns into a book. As I said, I will front the cost of the document and its distribution.

My hope is that more of you will post, comment, correct, or make other suggestions.

If any of you would like to be featured with a personal story (picture included or not), please let me know.

There are lots of documents with ALS facts and even ALS stories but, I think, the purpose of this manuscript will be entirely different.

 

[affected]

I get a bad server response trying to open the document?

 

[Janis J]

It would be wonderful if US medical professionals would put together information like that in
For Acute, Urgent And Emergency Care Staff | MND Association but geared to an American medical audience.

 

[gooseberry]

The lack of general knowledge by medical professionals about neuromuscular diseases is astounding. We have met ER nurses and doctors, primary care docs that don't listen, pulmos who have no idea how to treat restrictive airway disease and on and on. The drain of experience in healthcare is partly to blame. The ER staffed with newbie nurses and critical care units where patients aren't checked on at night is astounding and atrocious. Yet we have encountered it all. Doctors say they know best but I have said not in this case.

I would also say that the pals has been scrubbed and buffed for your visit. They are the best they can be when you are here. The before and after can be quite different.

 

[KimT]

The neurologist I dumped actually said to exercise more. When I explained that I used to walk 2 to 3 miles 3 times a week, and only stopped when I actually could not do it, and that daily I push myself as hard as I can, for as long as I can, even though it may not seem like much to him, he said try harder. It actually upset me to the point where I started over doing it, again, for example, using my hands and arms until they just would not move. My friend and son confronted me, about pushing myself too hard, and then I get to where I can't even lift a coffee cup was hurting me, not helping.

There is also one friend who just insists I am going to be miraculously healed, and regain all I have lost. She simply refuses to accept that this is going downhill not up, and no matter what the end results are, my muscles are gone. They are not going to grow back, and let me be the way I was. It's ... Frustrating.

Dear Karla, Things like this are so mentally exhausting. Some of the things other PALS and CALS are e-mailing me would be impossible to believe had I not heart them for myself.

 

[KimT]

I get a bad server response trying to open the document?

Tillie, I'll scan it and upload as a pdf.

 

[KimT]

The lack of general knowledge by medical professionals about neuromuscular diseases is astounding. We have met ER nurses and doctors, primary care docs that don't listen, pulmos who have no idea how to treat restrictive airway disease and on and on. The drain of experience in healthcare is partly to blame. The ER staffed with newbie nurses and critical care units where patients aren't checked on at night is astounding and atrocious. Yet we have encountered it all. Doctors say they know best but I have said not in this case.

I would also say that the pals has been scrubbed and buffed for your visit. They are the best they can be when you are here. The before and after can be quite different.

I'll be sure and include these comments when I get to the CALS part.

 

[KimT]

Here's a partial list of what some of the PALS are saying. Interestingly it parallels what some of the CALS have already said and I haven't even started with that part yet.

The working document will feature real-life stories but my MAIN objective is to educate those who can help change the system and really let the general population understand how ALS affects PALS and CALS.

 

[Atsugi]

Good letter.

 

[affected]

Thanks for the pdf!

This is shaping up really well, many important points and they read well.

It is a great work you are doing Kim

I will just note that PALS is singular - a (P)erson with ALS. We have often joked the plural might need to be PALSers

I can only imagine that this has been a huge job so far, keep at it, you are creating something for all of us!

 

[KimT]

Can't read any of the posts after my last post.

 

[KimT]

Good letter.

It's a start, Mike. More of my friends are volunteering to help in whatever way they can. I'm working on getting the college (my former workplace) involved.

 

[KimT]

Thanks for the pdf!

This is shaping up really well, many important points and they read well.

It is a great work you are doing Kim

I will just note that PALS is singular - a (P)erson with ALS. We have often joked the plural might need to be PALSers

I can only imagine that this has been a huge job so far, keep at it, you are creating something for all of us!

Thanks for catching my error, Tillie. I did know that. The former English professor who offered to help will make sure my grammar, spelling, and all that stuff is correct before it gets sent out or distributed. Meanwhile, others are volunteering to help. I'd like to get my former employer (Daytona State College) to hold a fundraiser for ALS awareness. I still think it is very odd that three faculty (out of somewhere between 300 and 350) died of ALS in the past 10 years.

I made some corrections, Tillie. Would you mind proofing it?

 

[affected]

Love to Kim, it's Sunday here so I will sit with a cuppa at some point and have a lookie. Warning, it could develop an aussie accent if I touch it .... :lol: