ALS Clinics

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starente15

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Joined
Oct 27, 2014
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809
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Lost a loved one
Diagnosis
10/2017
Country
US
State
NJ
City
Northern
Could anyone tell me what happens when you visit an ALS clinic/if they've ever been to the one in Chapel Hill, NC.? Thanks!
 
ALS clinics are set up to make things easy for you- kind of like one stop shopping! All the specialists come to you, one right after another! Take good notes and prepare to be overwhelmed! You will meet with everyone from a dietician, social worker, physical therapist, respiratory people, etc. plan on a long day, but a worthwhile one!
 
Thank you! My father's first appointment is the end of November and he will have an entourage with him to ask questions/take notes. We'll divide and conquer!
 
>ou will meet with everyone

and the vampires!
 
yea i got 5 of those blood suckers.
 
once it took 9 tries!
 
Max, maybe that was telling you something. You've heard the old saying "can't get blood out of a turnip!" Lol
 
>Max, maybe that was telling you something. You've heard the old saying "can't get blood out of a turnip!" Lol

:)
 
Could anyone give me some on ideas on questions that should be asked? All our heads are still spinning and it's hard to think of everything that might be important.
 
It is useful to be able to keep a record of each and every measurement they take from blowing in tubes (FVC, etc.) to pinch strength etc.

We go to quarterly clinics, an all day event, where we get (have) to see them all.

Have fun and look for humor ... it will be there!



Max - Wednesday, October 29, 2014 10:51:49 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.
 
How many opinions have you had? Could there be another disease that can be causing my symptoms?
Do I need BiPaP or a feeding tube?
Also be aware that not all clinics are the same. Some only have respiratory therapists while others have pulmonologists. With this disease you want a good pulmonologist.
Is your PALS having swallowing difficulties-if so you may want to ask if the clinic can help you get Nuedexta-made a world of difference to me.
Is his/her breathing affected? If so ask if there are exercises that can help with breathing. The Pulmo at the Houston clinic says the cough assist machine can be used to help with breath stacking.
 
If your dad exercises, ask about this. (Exercise addicts like my hubby have to be told strength building will damage them, and speed progression! Range of motion is great!)
Check with the social worker about services available when the time comes for in home aide care, as well as support groups for your dad and for his family.
Ask the dietician about calorie intake- one of the FEW pluses to this disease, as all the traditional high fat no no's are a plus for ALS patients. So he can load on the butter, ice cream, etc. and it will help him!
Good luck.
 
Great questions! Starting my list now.
 
Something to consider early is whether he wants a diaphragmatic pacemaker (DPS). You have to have a certain amount of diaphragm function left and some people get to the point that it is not an option quite quickly. Some centers are beginning to test their patients regularly with ultrasound to try to time it.
Another thing to ask if he is interested is about clinical trials. Are there any now he would qualify for? Or are there any upcoming? You can also search on clinicaltrials.gov for trials ( search amyotrophic not ALS)
 
but most clinical trials exclude people with DPS so he will have to make a decision one way or the other.
 
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