Fit to Be Tied...

[Lkaibel]

So today at clinic the physical therapist decides it might be a great idea to have Brian stand up from a chair and walk as fast as he can. He caught his toes on the tip of the chair leg and took a fall. This was just great too because he had a fall yesterday in the kitchen.

I think she may have thought this was okay because he walked well just doing the walk down the hallway test, but he walks with a cane and the whole thing seemed stupid.

Anyway, he is okay but hit his head and is having a scan now. New brilliant observation is to get a walker. Really? For the guy she just had March down a hall cane free? Then told to stand up from a chair and March some more? Anyway, we are ordering the Walker because we should have it but Brian won't use it yet. The whole thing was ridiculous.

Now I am hungry and crabby at the clinic, waiting for his scan results.

 

[Narrowminded]

Lenore - I think you need a new PT. or at least one that will research the disease before treating. Our first PT that we went to was awesome. He did a ton of research so he got it right. I'm so sorry your Brian had to go through that. Not bad enough he had to fall, but the dignity of it all as well.

Hugs,

Sue

 

[swalker]

There is no excuse for this. I understand that accidents happen, but this was not an accident. This was totally and completely preventable and should have been prevented by the medical professional(s) that were present.

PTs are trained about the risk of falls. Fall avoidance is a big deal in the medical profession and especially with PTs.

If there is a fall, there is a ton of paperwork that they have to fill out (in the US).

My wife is a PT who has treated several ALS patients, so I have heard about this from her side. Falls are always preventable in that setting and are simply not to be tolerated.

I agree. Get a new PT.

Equally important, work with the clinic about how they messed up and what they are going to do to improve the situation so that no one else suffers a fall under their care.

I would imagine their legal department is scrambling right now.

Steve

 

[gooseberry]

No gait belt? No common sense? I would talk to the clinic head!

 

[affected]

Oh hon, I'm once again gob-smacked

I would put in a written complaint. No matter what, NO PALS should ever be asked to do that, no matter where they are in progression, not like that.

So much education is needed ...

 

[avnl]

Grrrrrrr-grrrrrrr at them!������������

 

[Lkaibel]

What is craziest to me is that this happened in the context of a clinic day. We were seeing the occupational and physical therapists after seeing the Nurse, the Doctor, the lady from the ALS Foundation, and declining the nutritionist because we have that in the bag and we also said no need for the Social Worker.

The PT and the occupational therapists had already done strength testing/physical exams with him (after the Doctor already did). They knew that just yesterday Brian had a fall because he was in the kitchen and turned too fast and did not have his cane with him. They knew he walks regularly with a cane now, in and out of the house. as well as his afo's.

This same PT woman had done these "tests" with him before, in June, September, and December and I guess then I did not mind so much (I was wondering a little about it by December, because by then he had taken up pretty regular cane use). For right now though, it struck me as odd and frankly I wanted to stop it but did not, so I feel a little guilty. He did walk really well down the hall with his afo's, I saw that part but the chair and "walk as fast as you can" freaked me out to start with and then BOOM as soon as he got up and caught his foot on the chair.

THEN, PT Lady says he should be using a walker? Because he has "weakness in his upper legs". Really, and you told him to do THAT? No, he fell twice in the past two days due to not using his cane and insane instructions from YOU...

It is a really top notch ALS Clinic, certified and famous and all sorts of things and we LOVE our Doctor but he needs to make her stop asking people to do that, now. The fact that she works in a Certified ALS Center and is asking people to make those moves regularly is pretty nuts. It's even nuttier that the Doctor's are letting her. Maybe the good of this will be reconsidering that nonsense.

It will also be good for us to have a high quality walker in the house and available for needs that arise.

 

[Jrzygrl]

Wow. So what does it matter how "fast" he walks. Safety should come first.

Was the Dr. there when it happened? I know at clinic, the doctor, PT/OT, respiratory tech, etc. all cycle in and out. I would have some not so nice words for the clinic director.

Hoping he is OK and recovers quickly.

 

[Lkaibel]

The Director is our Doctor, Dr Walk. Since he had to have a head scan before we left, I did talk to Dr Walk and tell him what I felt about it and he agreed it was an odd request. I got the feeling everyone was really uncomfortable.

 

[Vincent]

As someone who worked in prosthetics for many years, I can't believe they had him do any walking without walking bars. People fall without them. Especially when walking fast. This pt needs to find another job. You could sue, people have over way less.
Vincent

 

[Lkaibel]

Vincent, yes I think it is pretty insane. My husband is just so nice. He is just in the mode of "well, things happen". I think having no healthcare background himself, he does not even know how outrageous this was. Back in my patient care days, I hovered over handicapped and older people sometimes to the point of annoyance. I can say with honestly there were no needless falls on my watch. Considering that random falling is sometimes a very early ALS symptom (it was for my husband, actually) her asking people to do that is way out of line.

 

[lgelb]

Lenore, I am glad he survived the experience but would file a complaint with the clinic director anyway. You might be saving someone else from disability in the future.

But while we all want our PALS to make their own best decisions, there are times when the person with more health care background should just advise or say "no." It would not have been behind his back and he'd have known you were looking out for him.

Granted, we had a head start on saying "no" since Larry was born with another fatal, rare disease, but between the two of us I have lost count of how many times we said it combined -- no to surgery, no to drugs, no to procedures, tests, to "jumping through hoops" as Larry would say.

For health care newbies, (which I know you're not, Lenore, I'm just hijacking your thread), here are a few of the many ways to say no, if you're not used to it.

We'll give it some thought.
I think not.
Thank you, no.
We'll decline that.
That's not necessary, thank you.
We'll explore that elsewhere.
We'll park that for now.

P/CALS, some time in your journey, a "no" will be the best course, I guarantee it. Embrace the power of "no."

Best.
Laurie

 

[Atsugi]

Definitely formal written complaint. Totally incompetent and not in the right mindset for ALS. "...as fast as you can.." That's for testing against a baseline. PALS need assistance, not testing.

 

[Lkaibel]

Yes we will Make that complaint. You are right Laurie it could save someone else from disability.

 

[Lkaibel]

I might add that what really grabbed me about that is that it happened at not just a Certified ALS Center, but one that has been described repeatedly as one of the very best in the country. We LOVE our Doctor, he is fabulous and needs to know I think the full extent of this before some one really gets hurt. He was so nice last night, but he needs to put a stop to what the PT person is doing.