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bythesea

Active member
Joined
Aug 6, 2009
Messages
82
Reason
PALS
Diagnosis
02/2010
Country
US
State
NJ
City
Bergen County
I am on the precipice of my first clinic visit planning to call them tomorrow. I’m hoping I (and the Mrs. especially) can make the journey into Gotham to the Columbia University hospital.
I read on their website that an interdisciplinary team visit lasts three hours and can cost a thousand dollars because insurance does not cover everything. Even though I have a diagnosis I am more worried that the first visit will just be that—just a visit, than another visit for testing, same o, same o

I’m in real need of more active intervention. My car driving days are just about kaput and I can no longer walk safely outside the house. This sounds like whining after just reading about a woman who has to make a three hour trip to MDA with an incontinent husband on a feeding tube, GOD BLESS THEM

Does anyone regularly use the clinic at Columbia, any product recommendations for a wheelchair and a walker? I am five ten and weigh two hundred pounds
and like long walks n the beach, who wouldn’t?

Joel, I think "you the man". Even though I am losing it, you bring sanity and personal responsibility to the often hairy problems caused by the Beast. Day at a time, Day at a time, Day at a time,
 
Are you going for your first ALS TEAM MEETING? Those can last up to 4 hours because you are seen by all the disciplines. No EMG or NCS are done :] If it is a designated ALS Care Center MDA will cover whatever is not paid by your insurance. We went to one and found it not helpful for us due to the distance [2 1/2 hour drive one way] and that it just didn't seem worthwhile. Our family Dr. follows us. 5 min from us and will make house calls if needed. Can you ask them about your concerns when you call tomorrow? I bet that you could get a loaner walker and a wheelchair from MDA loaner closet. Everyone suggests getting a power wheelchair. Good luck and keep us posted. Is there anyone who would drive you?
 
In Nevada we have The ALS Society of Nevada, and they have a patient advocate/social worker who arranged everything for us in the beginning. We also go to Clinic. but this is separate from the ALS of Nevada. Do you have something like this available to you? Lori
 
I HAVE MY FIRST CLINIC APPT ON THURDAY! I hope yours goes well too! I have never been to one, and I am going to Mayo in Jax, FL. They called me from Atlanta and told me there is going to be one started up about 30 minutes from my house! I had rather go to Mayo, but I know that it will be hard on my hubby when I get to where I can't walk or use my hands.

chefdeborah
 
Good luck with your first clinic visits, bythesea and chefdeborah! The one piece of advice I'd give is to have someone with you to take notes. The specialists tend to throw a lot of information and advice at you and it is easy to lose track of everything. Also be prepared that they may be looking ahead and trying to prepare you for problems you don't have yet, which can be a bit discouraging. But everyone says it is a good idea to try to stay ahead of the disease.

Bythesea, hopefully they will have some wheelchair experts there who can talk to you and get you started towards getting one. The social worker should be able to help figure out your insurance situation, and also let you know if there are loaners available while you look towards buying one if that is what you decide.

Generally I find the clinic appointments interesting and informative, but exhausting.
 
After two year of going to an ALS center, I took my wife to an ALS clinic here in St. Louis for the first time last Friday. We really liked it because we did see all of the deciplines in one day. No more making appoitments and waiting 4 to 6 weeks to get in. My best advise is to make a list of questions. Seeing so many folks in one day can rattle the brain a little and it is easy to walk out without having thought of asking a question you wanted the answer to.
 
Bythesea, if the Columbia clinic is like the one where I go, definitely plan on a good 3 hours. You will be seen by a nurse, OT, PT, rep from MDA, maybe others (equipment rep, speech therapist etc.). You will probably have a breathing test and some strength/flexibility checks from the PT. Bring a list of questions and concerns; the OT in particular should have good advice re equipment. It's a big info dump but we find it sooo helpful. My insurance covers everything at my clinic visit. They give us lunch too. :)
 
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