A good laugh from my Respiratory Therapist

[swalker]

I thought some folks might be entertained by my most recent exchange with my respiratory therapist. She is a wonderful person!

She has just been through training for the new computer system she will start using next week. She let me know that our next appointment will need to be a bit longer so that she can go through a new series of questions with me.

She has been asked to have me start thinking about my response to one question in particular.

"What are your inspirational goals".

Well, I tried not to laugh (and she did too). First, we discussed what was meant by inspirational. It was obvious it had nothing to do with breathing. Really, they are wanting me to identify goals that will give me some inspiration to improve. Perhaps aspirational goals would have been better. No, that would not work either. It hurts to laugh that hard.

In the course, she was told to suggest something like "being able to do the dishes" as an "inspirational" goal.

We both laughed. Rest assured that if I could get better, "being able to do the dishes" would not be anywhere near the top of my list!

My wife suggested that I respond with "bicycling".

I was an avid cyclist before diagnosis and miss it desperately, so bicycling it is.

If you are not from the US you may not have any idea just how messed up our medical system is. This is certainly a minor example.

I hope you enjoyed this brief detour from reality.

Steve

 

[Nikki J]

This reminds me of the RN from the specialty pharmacy I had to use once. She asked me to ” rate my disease on a scale of 1-10”. It was supposed to be a monthly thing I guess to see if riluzole was working but it only happened once. Apparently someone realized it was absurd to apply this to ALS

 

[affected]

nah, surely your goal is skiing unaided?

 

[swalker]

Nikki, I have been asked questions along that line. It has led to some interesting situations.

Tillie, yes skiing would be high on my list. As would climbing, backpacking, photography, and working on cars. There are too many things to choose from.

Steve

 

[stellfox]

It is often amusing to be asked some questions by the templates that have been created to judge progression. When you are sitting in your wheelchair and asked about walking and climbing stairs. LOL I understand the scientific aspect but perhaps at some point the scientific and patient side will get together to design a more realistic way of judging progression. I often wonder if a SOP like in other disciplines would be more helpful in the long run. As in all areas of this disease though it is unfortunately still in its infancy and not widespread enough for most to even notice. It’s always good to get a good chuckle from some questions though!

 

[old dog]

Steve - Thanks for a good laugh.

 

[Narrowminded]

Steve when my DH got his trach and vent, the newly branded CRNP that just started working with the pulmonary group was insistent on 2 things, that a he water a mask over the trach so he could be weaned from the vent and that he take the swallow test off of the vent. No amount a words from me with the ALS social worker would change his mind. Finally after speaking with the speech therapist and she speaking with him, would he listen. His response was no one told him. HUH???

while the question can give you good laughs if you’re in good spirits, it could really crush someone who is depressed. Our medical community as a whole needs some very intense training On ALS and it’s progression.

 

[swalker]

Sue, I agree completely.

My respiratory therapist and I have great relationship. I don't think she would have broached this topic to anyone else. We got a pretty big laugh out of it.

You are right, though, that our medical community does need some pretty intense ALS training. So many just don't understand. I remember a doctor telling me to "use it or lose it". That was the last visit I had with him.

Steve

 

[Narrowminded]

Steve I'm thrilled for your great relationship with your RT. We had that with Brian's as well. Those are so important with this disease.

Hugs,