1st time to Clinic/2nd Opinion - Questions for the Doc?

[Bill0808]

Hi Everyone,

My Dad was diagnosed in Aug 2010 and we are headed to the ALS Clinic this week. I am wracking my brain ... I feel like here is our BIG opportunity to ASK all the questions ... to get ALL the answers... our big chance to Be On Stage... THIS IS IT!

Only im having brain freeze... all this work to get there... all this time and tests .. now we are On Our Way!

Other than the obvious things... (I guess) A list of things that are uncomfortable.. and becoming a nuisance.. what should we be asking the Doc's? What would you be asking or did you ask on your first Clinic Visit?

Any suggestions or experiences will be very much appreciated.

 

[abbas child]

Hi Bill0808,

You and your wife are doing a wonderful thing in helping your Dad through this. And, I'm sorry for his diagnosis.

My first clinic was also the very first clinic at our local hospital--so we were all learning (and still are). I found that the doctors and therapists covered a lot of territory. Later, the only thing I specifically remember wishing, was to have asked if they were now going to be "in charge" of all my medicine prescriptions. For a while I felt a bit of confusion about the role my primary care doctor was still to play. And for the record, the doctors agreed to re-prescribe all that I use along with any future medications, taking that as part of their role. A nurse coordinator is who I call for anything I need, and I also have her email address at the hospital. I expect your team will be similar.

Most of what I centered on was actually with the dietitian during that first Clinic. She had good ideas for nutritionally packed soups and drinks, explained the role of probiotics in yogurt, and taught me a great deal.

However, although diagnosed in 7/07, my first clinic wasn't until March '10. I'd been to the Neuro, had the pulmonary function tests and seen a Pulmonary doctor earlier. Therefore, it was more "fine tuning" I needed and wanted from the Clinic.

I hope you'll have an ALSA Coordinator there, as that person can be one of the best resources imaginable. If you need any equipment, be sure and let them know--their loan closet can be checked.

This isn't a lot of help. I hope that you'll get more responses. And, welcome to the forum. Very best wishes for the clinic!
Ann

 

[sadiemae]

Hi, One thing really important is to be organized. Get a brief case style file folder. Take notes and listen. You will probably see 6 or 7 different professionals. For this first visit you may want to focus on equipment that he is going to need. Safety equip, such as shower bars and ramps that may be available through the loaner closet. Discuss a feeding tube and BiPap. Ask about a Power chair. Make sure you sign up with MDA. Get a name of someone from the ALSA that you can call for the questions you will forget to ask. Good Luck!

 

[brooksea]

Take a notebook and document every conversation with every "pro" you see. This will be helpful later. Be sure to get their business cards. Depending on needs, there may be others that enter the exam room, that are vendors. Get THEIR business cards.

 

[stephie]

I don't know if your dad has any physical limitations yet or not, but be sure to keep a list of all of the things he is having trouble doing. He will probably see a PT or OT at each visit and you would be amazed at the adaptive equipment that is out there! Some things take a long time to get, so mention his difficulties early. At one of my husband's appointments I said to the nurse "I there was such a thing as a lazy susan to put on the floor. He can still stand with my help, but he can't move his feet around to get in the bed." Her immediate reply was "Well, there is such a thing. It's called a pivot disc," and we go one a couple of weeks later. Who would have known?

 

[Kirk]

Bill - sorry about your dad's diagnosis. So glad you are taking care of him...what a blessing! You have already received some great words of wisdom from your post. I just completed my first trip to the clinic. For me it was a shock as the reality of this nasty disease hit me in the face for the first time as I saw my "future" right in front of me. I had read tons about ALS before my visit, but it was a bit overwhelming for my wife and I as I saw ALS patients that are "ahead of me" in their journey and at various stages of their struggle (i.e. neck braces, wheelchairs, etc.). I agree my ALSA rep has been a HUGE help! One of the biggest "pros" for me was the physical therepist...asking what exercises can I do to stay mobile for as long as possible and how much activity can I do, etc. etc. Best wishes to you and your dad...I'm just "up the road" from you guys in Austin. Please let me know if there is anything I can do for you.

 

[Bill0808]

Just want to Thank Everyone that took the time to reply. My husband Bill and I are using the same "user name" Im hoping that is ok... and I probably should have announced myself at the beginning of this Post, but I had so little time, and so many other things on my mind I just wanted to get the post out there, to make sure I wasnt forgetting something. But I am "The Daughter"

My husband really took charge when Dad got his diagnosed. Coming to this forum was one of the best things he did, you are all full of Great information. I do not know how I missed the suggestion to sign up with the MDA, somehow between everything else going on... but now I have contacted them and will call next week. I also went to the website, they also have lots of great info there.

Dad's limitations at this time are very few. He is having voice problems which have been slowly deteriorating since about March of this year I guess... its hard to pin point when the symptoms began, seems that he started having some serious choking over a year ago, the slurring starting in March-ish, and now he is having problems pronouncing some words, with some letters becoming difficult to get out.

Anyway, the Clinic visit was so incredibly long, and he had the EMG first thing in the morning which made for an even longer day. By the time we got back to the hotel room Dad pulled out the car keys to open hotel room door! We were exhausted. We got all the business cards, We asked all the questions on Dad's list, and then a few more as we learned... I took notes jotting down the things the "pros" told us, that was a very good suggestion, was great to be able to look back and make more notations ect. there is a lot of information coming at you all at once and the visit is so long you become emotionally and physically exhausted by the end.

Thank you again to all, as we go along on this journey it is very comforting to have this group along side.

 

[Beach Bum]

Are you the cute gal from New brunfels?

 

[Lavender Lady]

I will have my first clinic visit this Wednesday. Your posts were helpful to me as well.
Rox