Question about multi-disciplinary clinic

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lynster

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Hi all,

My husband and I are going to our first multi-disciplinary clinic on Monday. You know, sort of speed dating for ALS patients - you wait in one room and all of the specialists come by to see you. Can anyone tell me what to expect? Do you get more than 5 minutes per visitor, or does the visit length change with the perceived importance of the visitor? For example, my husband's current problem is mostly breathing related, so we would expect more time from the pulmonologist. Does that sound right? We know that we have received a diagnosed of ALS, but do not know if we need a physical therapist at this time.

I really hate the unknown, and would like to have some idea of what to expect.
Any input would be welcome!
Thanks.
Lynn
 
Lynn, I wish I knew (hoping someone will respond to your question). I've got my first clinic appointment at Hopkins at the end of the month, and have been wondering the same thing.

When we were down to the neurologist in July, she had us go into the clinic and meet the director. We only had a few minutes in there. it wasn't like we got a tour, mostly just hellos. We were told then that when I came in for an actual clinic appointment, that I'd see a physical therapist, an occupational therapist and others. That was about all the details we learned though. They did have a table with sandwiches and cans of soda etc setting on it, and she remarked to us that it was there for the patients and their families, as it was usually a several hour visit.

I'd imagine that most ALS clinics have similar set ups to one another, so maybe someone here on the forum can say what to expect in more detail.

Good luck! :smile:
 
At our ALS Clinic they set aside 3 hours and divide the time up between the group - a PT, an OT, a Speech Therapist, a Dietician, a Social Worker and the Neurologist. We get to see everyone but the time is flexible so more time is spent with who is most needed. They are all fantastic!
 
I have been going to clinic at UCLA in Los Angeles. Due to health issues I changed this month to the clinic at Loma Linda University Medical Center. Closer to my residence. Both clinics were about the same set up wise - you are right - speed dating with specialists.

The problem is that not all clinic have food available. UCLA did not but we were there about 2-3 hours and new what to expect.

Loma Linda said that there woudl be a break to go downstairs to buy some food. Well we got there at 11 and saw the dr first. Then a series of people until 3pm. No break - no mention of food or water or restroom. I was exhausted. I asked for some water and noticed that the rest room in their area could not handle a wheelchair. I asked the coordinator what happened to the break for food. She was surprised that we had not eaten. I was surprised that she couldn't figure it out. She said that some people bring food with them and eat while talking to the reps. She offered to heat up some pasta that the reps had brought in for the staff to eat. I would have never just brought food to a dr appt. I was so exhausted that we just left. Unfortunately that was a bad idea since I had not seen the speech therapist yet. Oh well. I will just go to the clinic unannounced next month and ask to see the speech therapist.

Ask questions, call ahead, be clear about what is going to happen. Ask which specialists they have that you are going to see. I was surprised that LLUMC did not have a respiratory therapist on hand. They are looking for one.

UCLA had you see only the reps that applied to you so it was not so long a visit.

Sharonca
 
I have only been to one ALS clinic visit. It lasted about 4 hrs. My family and I stayed in one room while all of the therapists and neuros came through. My 3 neuros came in first and stayed about an hour, then physical, speech, occupational, equipment, dietician and respiratory. The resp therapist did a quick lung function test, and most of the others gave us info.
There was also a visit from the patient services coordinator that was extremely helpful. I go again at the end of Oct. and I'm hoping to have an EMG done during that visit.
Hope this helps, everyone will hopefully be very helpful to you and your husband,
Keep the faith,
brenda
 
Lynn,

I've had my first 2 clinic appointments the past 5 weeks, one at UCLA and the second at UCI. They were setup pretty much the same. The doctor sees you first, and of course takes as much time as necessary. I saw the PT, OT, respiratory therapist, social worker, and MDA representative. It seemed like there was no set schedule, but that the doctor spent about an hour and the others were each a half hour or so. But it also seemed like a very flexible schedule, so that you get as much time as you need. I never felt rushed. This is really a great service for PALS. Can you imagine trying to schedule separate appointments with 5 or 6 different specialties every 3 months?

Good luck to you and I hope you get the answers you are looking for.

Keep the faith,
-Tom
 
Question for you

My mom was diagnosed about 1 1/2 weeks ago with ALS. She has twitching in both arms and beginning in her legs. The twitching (fasiculations) began around May in one arm and have moved along quite quickly. She has great difficulty using her right hand and says it is very stiff. Does this seem kind of fast to you or is it just me? How fast do things generally progress? I know everyone is different. I just really want things to slow down!

Thanks!
 
Hi Lynn,

On my DH's first visit we saw everyone..........the nurse, Dr., respiratory therapist, nutritionist, social worker(ALSA), mobility rep, & speech therapist. We were there a good 3 & 1/2 hours. Since then they only send in the people we need to see. For instance, my DH has no speaking or swallowing difficulties, so at this point we don't see the nutrionist or the speech therapist. They will know that you will probably have lots of questions, especially on the first visit, so plan for a long day. I wish you both the best of luck!
 
In my case the clinic runs for at least 4 hours however if I'm done in 2 I go home. The important thing is to get any questions you have answered. I won't let whomever is in the room with me leave until they answer or address all my concerns. In my experience this has never been a problem. They will probe for issues.

Every clinic is different but I have found mine to be very helpful and informative. My recommendation is go prepared. Think of any questions and write them down, if you're interested in a trial do some research and write down any new issues or things that you believe may become issues to discuss. Just like the Boy Scouts - Be Prepared.
 
Hi austydak. Was your mom diagnosed locally or at an ALS Clinic? How long has she been having symptoms? Other than the hand does she have weakness anywhere? It is hard to give a timeline on progression. No two of us seem to be the same. There are similarities sometimes but then one will slide down hill faster.

AL.
 
I like to think of pALS like snowflakes - no two are alike.
 
Time to give you my feedback...

The Clinic was really great. As it turned out, they called the day before to find out if we had any specific concerns that we wanted covered. Since my husband's main area of concern is his breathing, we wanted to focus there, plus get information we will need on advance directives and home remodeling ideas.

We came away with s@#$loads of information that we will wade through and pick what we need right now. All of the people were pleasant and very helpful! My husband also got tons of tests - strength, respiratory, etc. When we were alone for a minute, he wondered why. I told him that it was just like a baseline mammogram at 40 - except it didn't hurt! They will need it for later comparison.

All in all, most questions were answered. We did throw the pulmonologist for a loop when we asked a couple of questions about sex. Let's just say that I have never before seen a physician blush. (It was sort of funny, but I won't go into detail here - TMI!)

Thank you to all who replied. That alone helped to allay some fears and concerns.

Happy Thursday!
Lynn
 
OK, someone finally brought up the topic of sex! Tammy and I have not been engaging in sex...together...for several months now. We were going to ask our Dr....but chickend out. Tammy suggested that I bring up the issue on this forum, as difficult and embarasing as it is. Tammy uses a bipap and she cannot lie on her back or stomach... Without getting into a heap of descriptions, I'd appreciate some feedback from others.....don't need to get to detailed please.... on how you overcome this challange. I'm embarassed to say that Tammy is the one asking... I'm always so worried that I will hurt her, maybe hurt is not the correct word...make her uncomfortable. If this is to sensitive a topic, then please do not reply or delete my question.
Mark
 
Hi Mark- we discuss everything here! (Actually we only draw the line at trying to sell something.)

I am hoping some PALS have ideas. I read on another thread that there are positions for the PAL that make htings more comfortable. Try a search!

I also know that you can ask anybody who counsels folks who are almost completely paralyzed. Those who work with head-injured or stroke victims often get asked about this. Good luck! You guys sound like a great couple! Cindy
 
Hi Mark, yes this is a sensitive topic but a beautiful part of life and there is no reason to be appologetic or embarrased.

We had the same problems as I could not lay flat, either on my back or stomach. Even laying on my side I got short of breath and it didn't work. We finally figured out how to do it effectively standing up. Definitely not the ideal, but we made the best of it. Once I graduated from Bipap to a Tracheostomy and vent life got back to normal, I can now be comfortable on my back again. Life on a vent is soooo much better/easier than using a BiPap.

I really hope you can get this resolved soon!
 
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