ALS Clinic

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ronwv

Member
Joined
Oct 16, 2008
Messages
13
Reason
Loved one DX
Country
US
State
WV
City
Morgantown
1st visit in a couple of weeks for my mom. Dx about 6 wks ago.
Anything in particular to ask/do? no ALSA in this area, so this and the MDA is all avail.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi, ronwy ... the visit will probably be a long one. They'll take a thorough medical history, but probably do very few tests ... maybe lung function (blowing into tubes, etc) and the usual neuro stuff ... bonking with little hammers, having your mom walk around.

I'd take a list of all your mom's medicines, including dosage and how frequently she takes them. Include any over-the-counter stuff. I always take a list of surgeries and medical problems, etc., with dates, as they will want that, and I forget things in the doctor's office if I don't have them written down. Also, take a list of all your mom's doctors, with phone numbers. If you have copies of any of the tests she's had done, I'd take those, too.

Write out your questions in advance. You will probably leave with 100 more questions than you went in with, but that's normal. See if there is a way to contact the clinic for asking questions later ... e-mail, phone calls, etc?

I would imagine they will schedule more tests, unless she's had some (like EMG) recently, and may set-up follow-up appointments with therapists. They probably will write some prescriptions, too.

It should not be stressful at all. I find that the clinic doctors are willing to listen and they do pay attention to what you're saying (some of the time :)) The MDA rep may be there, too, to talk to you about services they provide. Mine has seen me at all my clinic visits, and is extremely helpful ... in person and financially from MDA !

Good luck to you and your mom.
 

Tfisher

Distinguished member
Joined
Oct 3, 2008
Messages
119
Reason
CALS
Diagnosis
6/2008
Country
US
State
Mn
City
Brooklyn Center
ronwy,
My mom's diagnosed was this past summer with bulbar onset, symtoms began a year earlier. The first appt. was long with info overload but I am amazed at how helpful our ALSA is. The clinic is very full with so many patients but they do a remarkable job of helping with everything and their response time is immediate. What I have learned so far is that ALS is so different for everyone that you almost have to wait and see how things progress and deal with it as it comes.
Hang in there,
Tfisher
 

kylisa

Distinguished member
Joined
Feb 11, 2008
Messages
195
Reason
Lost a loved one
Country
US
State
KY
City
Stanford
My mother's visits include the usual: check vitals, check muscles, check breathing, make suggestions my mother refuses to do (lol), and email access to the clinic nurse in between visits. The ALS clinic has been "wonderful" to her. Please, whatever you do, at least try anything they suggest and give it an honest effort. My mother is not the best patient in the world and would probably be more comfortable if she didn't fight everything.
 
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