Went to Clinic Friday.

[Phil M]

Wasn't very productive IMO. My walking is getting pretty bad, and I felt for sure they were going to prescribe me a wheelchair, but they weren't going to do anything! I had to call someone back in the room, and tell them that I thought they were overlooking my difficulty in walking. They prescribed my some foot braces/splint thingys. I hope they help! I feel like I'm going to fall on my face all the time. I also wanted a cough assist. They were supposed to send that Dr back in the room, but I think they forgot about me, so I just left! I feel like you don't get as good of service in the clinic environment. They have so much going on, I think they forget everything! They have a breathing Dr now that I have never met. She was a absolute *****! If I treated people in such parell as us pals. I would atleast be nice, and friendly. Good thing I can't talk I guess. I might have made a fool of myself! lol!

 

[CAHPAH]

Phil
That stinks! You have enough on your plate without having to fight to get good care. These people are suppose to be on your side. Wish there was something I could suggest. Hang in there man.

 

[abbas child]

Oh, Phil... terrible. I'm so very sorry you had that kind of treatment! If you get the AFOs (splints), I sure hope they make a big difference for you. They did for me for quite a while with my foot drop.

Do you have a coordinator for the clinic, who is supposed to make sure everything is covered, and perhaps calls you when changes are made? I have a "nurse-coordinator" to call. She is who I'd contact if possible (if you can email or have someone else call). Otherwise, it this is the best treatment they will give you, I think I'd go to separate doctors... and ask for the cough assist. But I think it would be good if you complained--you're paying for the clinic and didn't get your money's worth...or insurance/Medicare's, etc. You need this help.

 

[brooksea]

Phil, thanks for the heads up! Oh joy! We go again this Friday. Can't wait to meet the new, charming doc! On more than one occasion, I've had to hunt people down so we could leave.

You need to send an email to Nicole, explaining your disgust with that doc. There is no excuse for shoddy treatment. I believe they want the feedback and if they don't then screw 'em! I don't believe Dr. Glass would stand for such nonsense. He's in charge and needs to know. Was it a "fellow" working under him, you think? I bet it was and they are so snotty and think they know everything and treat you like a lab rat. They are in the real world now and need to learn to interface with the actual human beings they will treat/serve/get their pay check from. Also, let Nicole know that you left, as the cod (oops) I mean doc never came back in to see you, as she was supposed to. Did you go by yourself? Wish I could have been there!:twisted:

As for the cough assist, contact the ALSA and MDA. They may have one in their loaner closet. That's where we got ours. It's very expensive, so the monthly co-pay is rather high. Also see if they have a loaner PWC. It could be of help til your next appointment. It wouldn't have to be a fitted chair, just something to help you get around.

And next time, park at Valet and request a wheelchair. Have someone wheel you in to the clinic, or wheel yourself if you are still able. Hint, hint...Balance issues, etc...

 

[Miss]

Our clinic is really good. I think it might be because the MDA patient care coordinator is so heavily involved (as well as an excellent lead doctor). The only "bad" advice was from a PT. She apparently had a situation with an later stage ALS patient resulting in a shoulder dislocation. She told us not to do range of motion exercises that lifted his arms above his head. It resulted in frozen shoulder and was very painful to work out.

 

[Phil M]

Abbas Child, yes, I know who to talk to, so its no biggy.

CJ, I just looked it up, and it was a year since my last visit. Its a woman Dr. You might know her already. Yall probably go more than I do. I just go when I feel the next stage coming on. I told them that I thought the formula was making its way back up into my throat, and she started arguing with me saying I had a serious problem going on. I thought she was gonna send me to the ER! If I was aspirating it, I would know it. Thats what I told her.

 

[brooksea]

Not Sophia Loren, I hope! (No, she looks nothing like her! LOL) My husband has nicknames for everyone. Speaks with an Italian accent...Kinda curly hair? If so, we've already made our complaint about her. She daren't show her face to my husband on Friday!

 

[Zaphoon]

I'm sorry you had such a crappy clinic visit, Phil. Your episode has given me an idea, should I ever get to the point of needing a chair prescribed. I'm just going to tell the doctor, "I'll take a blue one!" and when he asks in return, "A blue one of what?", I'll tell him, "Wheelchair, you idiot! Can't you see I can hardly walk any longer?"

Ah, but I don't count on that happening.

I digress...

If this had happened to me, I'd have had to treat myself to a chocolate shake on the way home.

 

[brooksea]

Y'all are too nice! LOL A chocolate shake? How bout a shot of tequila?

Oh, it will be very fun on Friday if she has been chosen to be sent to our exam room! Salute!

 

[Miss]

We always eat Krystal burgers after clinic. They hold memories from our youth - late nite snacks.

 

[BarryG]

Phil, I get the formula back up into my throat all the time and my clinic staff suggested cutting down on the water that I take after the formula to one 60ml syringe and then taking a couple more syringes of water a while later.

I agree with you, it is a totally different thing than aspirating. In my case the spreading out of the water intake has helped to cut down on some of the phlem which causes me the most problem in the late afternoon and early evening.