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Take notes, have a spread sheet with as much past medical history for you brother, have copies of all test results, medications with dosages, copies of MRIs, EMGs, Blood tests and dates. Any doctor that he sees will want to see copies of everything and it's good to have for yourself too for filling out paperwork. You can request copies of everything from the facilities he's been to. Has he applied for Medicare and SS Benifits yet? Good luck to you. Your a good and loving sister!
 
when you pick a clinic, pick one that is easy to get to from his home--as he progresses travel will be more tiring and difficult. Clinic is def the way to go especially as he needs equipment and more assistance. We only go once a year now as my hub is slow progressing. He can decide how often he needs to go. when we were first diagnosed we went ever 3 months then extended to 6 now yearly. not sure we will even go back this year unless there is a problem.
 
I got the definitive diagnosis of ALS on Aug. 23rd after trial and error of many test over 8 months. (short compared to some). During this appt. he discussed end of life choices, speech therapist since I am bulbar, ran pulmonary test and ordered bipap immediately. He scheduled an appt in 3 months and his social worker is calling me about joining his groups at the clinic. That's a run down of how it is working out for me right now. Your brother is lucky to have you for a sister. He also needs to be applying for any benefits that are available to him. Good luck.
 
This is super helpful input. Thank you all so much. I wasn't sure how often PALs go to ALS clinics or what next steps my brother should take.

Ms. Pie, great recommendation to get copies of everything and have them handy. I will mention that to my brother and sister-in-law. To answer your question about Medicare and SS benefits, no, because he lives in Canada. I'm not sure whether there are LTD benefits available through government healthcare in Canada but plan to look into that (thankfully, the HR person at his workplace is in the process of getting him on LTD benefits as well).

Elaine, I am glad to hear that you have such a supportive, empathetic neurologist and are getting good care. My brother hasn't seen the neurologist since his diagnosis, which struck me as odd since it was almost three months ago.

Jamie, I'm so sorry to hear about your diagnosis. I can only imagine what a shock that is.

Barbie, the nearest ALS clinic to my brother is a 4.5-hour drive away, unfortunately. I am wondering how that is going to work as time goes on. My parents and I are about an eight-hour flight away from him. I so wish that we lived closer. I hate being so far away from him right now.
 
Compass Rose
I am brand new to the forum and finding it VERY confusing to navigate! I am also interested in how I can be prepared for our dr visit although we are just starting out this week with a GP.

He has had trouble with his voice for over a year. We thought it was his goiter. For the last few months he has been slurring his speech and struggling with excess salivia to the point that he finds himself drooling. He finds himself short of breath frequently. He his increasingly having trouble using his hands and fingers. Struggled to put his seat belt on, button his shirt and sign his name.

I want to be a good caregiver for him but feel overwhelmed about the dr visit. I appreciate those who have responded to you and find those who do to be very informative.
 
Hi Loni,
Welcome to the forums! Are you confused by the forums or by ALS? This is a great group of people!

Jen
 
Hello Loni,

Welcome - you will find great support here as you navigate the diagnosis process. Take it a day at the time. I had some challenges finding my way around the site too ( still do at times), but you'll figure it out.

All the best to you and your husband.
 
Sadiemae posted a great link that helped me when we first found out about my husband. You can find lots of answers on the video and lots of support here.
 
Jen - My statement of "VERY confusing" was in regards to this site. It just took me 10 minutes to find this thread! I am sure with practice I will get better at it.

I have found a lot of suggestions helpful in preparing for my husband's appt on Tue. I have been compiling a list of his symptoms but didn't think to include when each started. Great idea! I also appreciate the comment to not go expecting a certain diagnosis from the dr. Just let him sort through the sysptoms and see where that takes him. That would seem obvious but afte spending time on google it seems to mess with my head.

Thanks to everyone for taking the time to post. Loni
 
I talked with my brother today and he confirmed that neither of the two neurologists he's seen have referred him to an ALS clinic. The second one, who practices in the city where the ALS clinic nearest to my brother is, mentioned that he might want to come to the ALS clinic but acknowledged that it's a 4.5 hour drive for him and that he might want to work with the neurologist he first saw and access services that way.

I suggested to my brother that he pursue getting an appointment with the ALS clinic as soon as possible. My dear brother is such a sweetheart, but he's not particularly assertive about anything, including his healthcare. So I told him I can advocate on his behalf and try to help him navigate the system. Living so far away from him (an eight hour flight), I can at least do that.

My brother said his hands are getting weaker (he's having trouble doing things like holding a pen, opening a sandwich bag, buttoning his jeans, etc.) and he's been wondering for the first time (or at least, the first time he's expressed it to me) what will happen if he loses the use of his hands and how he will manage, especially since he works in IT. Fortunately, his company is very supportive and will make accommodations for him, from what I understand. My heart breaks into small pieces over him having to worry about such things. And I will do anything I can to help him. Maybe that's going to be figuring out what equipment or implements can be helpfult to him and tracking those down for him. Maybe it will be helping him get appointments and helping him with what happens next. Maybe I will have to move to be close to him. Whatever is needed is what's going to happen. He is so incredibly kind and sweet and thoughtful about everyone else, my brother. This needs to be about HIM and what he HE needs.
 
You are a great sister! It sounds as if he will need an advocate, as well meaning and caring most doctors are, they often assume we know about the same things that they do... Had it not been for this forum, Rog would be in much worse shape than he is... The wealth of knowledge and support is amazing! Keep us posted!

Jen
 
Thanks, Jen!

You are obviously a wonderful caregiver and supportive wife. I'm glad for you that you've found help on this forum. You are right; the knowledge and support here is incredible.

My SIL made a follow-up appointment this morning with the neurologist for September, and my brother will have a third EMG in October. He plans to call today about getting an appointment at the ALS clinic. I'm glad. He is also getting help from his local ALS association. The woman he's been in touch with there has been super helpful and responsive.

Living as far from him as I do, this all makes me feel a little better.
 
The Occupational Therapist will be able to teach him some tricks or order devices to help him adapt to the decline in his hands.

CR, the ALSA and also the MDA ALS Division here in the US offer some wonderful Caregiver Guides. You might contact them. Great resources!
 
I would like to see the caregiver guides. Thanks for the suggestion!
 
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