First Clinic Visit

[bleonard4]

Good morning everyone.
My sister who was diagnosed in June 2009 has her first clinic visit this August. She is 47 with 3 teenage kids. We are trying to think of pertinent questions she should ask while she is there. She is overwhelmed at this point which I am sure many of you have felt and still do. I just suggested that she be prepared with questions in hand so that nothing is forgotten. Do any of you have any suggestions on things you wished you had asked your clinic team earlier or is there anywhere on these boards that may have some ideas on what to expect on that first visit. I looked but couldn't find any postings. Any help, suggestions or ideas are much appreciated.
Thanks,
Barb

 

[Blackpool]

I posted the same question at the begining of this month before I went for the first clinic appt. These are the questions I asked ;1)Results of ENG Example, what arears are effected.2)Are there stages like in Cancer and were am I at.3)Am I confirmed 100% with Als4)Is resportory onset last stage.5)Last but most important, what meds. are available and what can I do to fight it. I hope your Als team is as careing as mine has been, each person has made me feel they have all the time in the world for me, and answer any questions straight forward but with compassion, and answered questions that I was to chicken to ask. Hope this helps a little, Good Luck

 

[mare]

Hi, Barb-

I'm not great on the computer, so I can't post the link- maybe someone will help me out with this!?!
BUT, if you use the search feature and look for the thread "FINALLY... getting some helpful info...", post #10 by hope_faith gives their experience on their first visit.

Also, "In the right place?" thread by SandraD has various posts on different PALS visits from different clinics.

I think Rose also gave a detailed explanation of what to expect from a first visit. I'll try to find that thread/post.

 

[rose]

(thanks for the p.m. heads up, Mare)

The clinic appointments are kind of like speed dating, in that the PALS and whomever accompanies them usually stays in one room, and the specialists, and researchers, make their rounds into that room.

First off, one is weighed, and their FVC (breathing) measured, & BP taken. Then, a short form where the PALS puts down their perception of progression is completed.

Usually, at a bare minimum, there will be discussions with an OT, PT, & social worker from the MDA or ALSA. Sometimes also a Speech language pathologist. Other tests may be scheduled for either during the visit or for a later date. Trials that the PALS can participate are usually explained at this time.

I would jot down any questions that come to mind between then and now, from wanting further clarification as to what testing so far indicates ~ such as.... "what does a FVC of 86% (or whatever it is) actually mean?~ to questions regarding financial help, or how to apply for social security disability or a handicapped tag for car. Also make a note of everyday type things that are impacted at this point by weakness, regardless of the area affected.

There have been several threads about this in the past, and I know they really helped me prepare. I would like to add more now, but there are other constraints on my time (i.e. the puppy is shredding bubble wrap at my feet even as I type this)

I hope you find the answers you need, and will try to check back later.

good luck to you!

 

[GlenBrittle]

Yes , ROSE had it right.

Take a note book to write everything down.

You will see many people and , trust me , most of them will become important people to you , like good friends.

The OT will be a lifeline to equipment that you will need in the future. Never be shy to ask for something ahead of your time , actually , remember to do that always.

The PT will be the how to person as far as how to do things easier and will introduce you to the "saving energy" concept.

The Pulmo doc will test you for breathing.

There are so many people there to help you .

You may see people at different stages of different diagnoses , not to worry you , but to tell you go with a positive attitude.

They will tell you there .... its attitude and energy. Keep both positive.

I can say that you should look forward to seeing these people.


Glen

 

[bleonard4]

Thank You!

Thank you all for your helpful information for my sister. I told her about this web site and she said she looked at it and just isn't ready to come here yet. She says it makes it "too real". I hope after her clinic visit it will seem more real so she starts to be proactive in her care. In my job, Pediatric Resp Therapist, I too work in a clinic where we do the multidisciplinary team approach, so I have been able to share that part with her. I really appreciate the great advice from all of you. Thank you!
Barb

 

[mare]

Barb-

I totally understand your sister "not wanting to come here yet". My husband is the same. He was actually the one who found this site when he was being diagnosed, but found it difficult to read some of the threads/posts. I think it was too much, too soon.
He likes to say, "I know the big picture; I just don't need to know the details. I'll deal with them as they come. Don't want to worry about something that might not happen!"

So, I do the reading & researching here. I tell him things that are pertinent to him, even have him read some specific info (i.e. discussion on AFO's- I thought he needed them, he was resisting, but when he read everyone's comments how AFO's helped, he did get them!) And, he will ask me some questions- what is said about this symptom, what do people do about this problem, etc. It works for us!