gooseberry
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Steve goes in a little while to the afternoon session.
Its clinic week
- Thread starter gooseberry
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MaxEidswick
Legendary member
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- Sep 1, 2013
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- 5,598
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- 08/2013
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- Pinehurst
>Hoping for good news
Ditto that!
Ditto that!
patrick123
Distinguished member
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- Oct 4, 2012
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- 09/2012
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- thornton
Always a fun time.lol
gooseberry
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Fun it was! Breathing was a.mixed bag....fvc stable, o2 dropped, co2 climbed. Pt showed loss of balance and said the use of a walker at all times is very important if you are still mobile. She said it will help to maintain balance. Walking without the walker will not.
Nothing else to really report from ot, dietician,social worker, neuro, etc.
Ot did suggest replacing buttons and snaps on clothing with velcro to make dressing less energy intensive.
Have a good weekend everybody.
Nothing else to really report from ot, dietician,social worker, neuro, etc.
Ot did suggest replacing buttons and snaps on clothing with velcro to make dressing less energy intensive.
Have a good weekend everybody.
gooseberry
Extremely helpful member
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- Jul 2, 2014
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- Lost a loved one
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- 5/2014
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- Tampa
Blechhhh Janie! Why so long? I think Steve's at 3-4 hrs are too long. They exhaust me. He took his power chair and at one point we didn't see anyone for an hour and a half. I dimmed the lights , he reclined the chair , and snoozed.
tripete
Very helpful member
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- Dec 5, 2014
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- 12/2014
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- Lancaster
Same here! Us lungers need to stick together I guess.
KatB
Active member
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- Mar 3, 2015
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- 02/2015
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- Oxford
Gooseberry, I have my first clinic appointment at Tampa on the 25th. I assume that's where you go since you are so close. I have no idea what to expect, I have an email into the director for info. But perhaps what you have experienced would be more helpful to me. Do I take my test results with me, are they going to ask me for info before my appointment? Not that I'm nervous about it, I just want to be prepared.
Thank you
Thank you
gooseberry
Extremely helpful member
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Clinic is only on Friday so your appointment will be an entry appointment with either doctor katzin or vu. Unless you have already had this initial appointment with one of them.
If this is your first time meeting them, bring copies of every test you have had done and any disks from scans. They will review it all. This will be followed by a thorough neuro exam.
Bring a list of questions...what type do I have, where am I in the disease etcand anything else that you want to know.
If this is actual clinic, you will need to be there at either 8:30 or 12:30 for the morning or afternoon session. They run 9-12, or 1-4. These are approximations. At the first one you will see alsa rep,social worker,ot,pt,rt,neuro, and dietician. You should bring your filled out packet they mailed to you. They will all assess you and provide recommendations. Its good to have someone there to take notes. A few weeks after clinic you will get a copy of your clinic notes in the mail. Keep them.
If this is your first time meeting them, bring copies of every test you have had done and any disks from scans. They will review it all. This will be followed by a thorough neuro exam.
Bring a list of questions...what type do I have, where am I in the disease etcand anything else that you want to know.
If this is actual clinic, you will need to be there at either 8:30 or 12:30 for the morning or afternoon session. They run 9-12, or 1-4. These are approximations. At the first one you will see alsa rep,social worker,ot,pt,rt,neuro, and dietician. You should bring your filled out packet they mailed to you. They will all assess you and provide recommendations. Its good to have someone there to take notes. A few weeks after clinic you will get a copy of your clinic notes in the mail. Keep them.
KatB
Active member
- Joined
- Mar 3, 2015
- Messages
- 61
- Reason
- PALS
- Diagnosis
- 02/2015
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- US
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- FL
- City
- Oxford
Very helpful gooseberry, thanks so much.
Yes, I'm scheduled at 1:00 & I'll watch for the packet to fill out & take with me.
We can finish gathering my records next week and I be ready.
Much appreciated.
Kat
Yes, I'm scheduled at 1:00 & I'll watch for the packet to fill out & take with me.
We can finish gathering my records next week and I be ready.
Much appreciated.
Kat
ECpara
Senior member
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- Jan 7, 2012
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- 605
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- Lost a loved one
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- 02/2012
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- Thomasville
Must be contagious.....Tom had clinic Thursday! Not so good. FVC 18%, inspiration (diaphragm and inspiratory muscles) only 6%, expiration (abdomen and expiratory muscles) only 10%. Ordering power wheelchair. seat assist, a different cervical collar. Wants him to use rollator walker (he won't). Scheduling radiation for his out of control saliva. Everything depressing. But he's still kicking so I'm happy for that!
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