Health Topics

How to “Stick with It”

Andrew Schorr:

So, Maryam, how do you get people through that?  So you don’t like somebody to leave without having the next time scheduled, right? 

Ms. Naziri:

Right.

Andrew Schorr:

And also you’re giving them positive strokes as far as improvements in the Phe level and whatever behavioral notations that happen, right?  So in other words you just try to keep it going, keep the dialogue and the efforts going.  But you don’t have to be perfect, right out of the box, right? 

Ms. Naziri:

No.  We definitely try to keep the momentum going and use the positive reinforcement of possible decrease in Phe levels, improvements or changes in behavior to kind of show them that this is working, that even though it’s challenging and it’s going to take work it is working and it’s something that you definitely should put your energy into.

Andrew Schorr:

Well, it certainly makes a difference.  Rich, so let’s get real specific here.  There is somebody listening who’s Matt from months ago or years ago and is not managing their diet, their Phe levels, nothing, okay, and maybe isn’t fully aware of the effect on them, their fatigue level, their energy level, their relationships, etc., all the things we talked about or even where they’re headed over their lifetime.  What would you say to them to stick their toe in the water and come back?  What would you say?  What’s the first step? 

Mr. Dineen:

I think sometimes one of the easiest steps for people is sometimes to try to find a PKU center that they could pick up the telephone and call and just get a little bit more background information to explain their situation, to be able to say that they’re interested in potentially going back on treatment and being able to discuss their individual situation.  I think it’s a little less threatening for somebody.  It gives them a chance to see how they respond to those people over the telephone and maybe get some of their initial questions or concerns answered before actually coming in for a clinic visit.

Andrew Schorr:

Great advice.  Now, remember, there are all sorts of online groups.  There are people out there around the country, around the world, who have done this.  There’s Matt. 

There are other people now who will be featured on our website.  The NPKUA of course, a wonderful resource for you so you are not alone.  Matt, you connect with other people on the internet, don’t you? 

Matt:

Yeah, I actually wanted to discuss, I’m actually talking to other people with PKU.  I’m on Facebook, and I searched PKU on the Facebook site and there’s a good number, two, three, four different organizations with people joining and you just talk about PKU and your experiences and there’s other people with kids with PKU that ask me questions and stuff and it’s a good place to start off.  Talk to somebody else with PKU on Facebook or Twitter or any of those other websites that are out there.  If anybody wants to you can search me, it’s Matthew J. Arch, and I’d be happy to friend you and answer any questions or anything that you have.  It’s definitely worth coming back to diet.

Andrew Schorr:

I want to ask you just a little more about that before we wrap up.  So I personally think it takes a lot of courage and determination to make that change, and I’m sure your parents and your sisters and everybody who knows you is really proud of you taking control, being truly a powerful patient.  What would you say to someone as far as the benefits of finally doing that, maybe after as long as you, 20 years?  What would you say to them to just get started? 

Matt:

It’s never too late.  There’s so much new things and it’s just never too late to start.  They’ve learned so much more about PKU and it’s good to learn.  The Kuvan, the candy bars and the juice boxes, there’s help financially and with the people that help support you emotionally, your family doctors, dieticians, people you meet with PKU at cooking classes and meetings and outings.  There’s just so much support, and there’s no reason to be scared to go back.  There’s just so much to do, I mean, so much, things to think about.  And it improves your quality of life.  Helps you, you know, the side effects, you start remembering more, and it’s just definitely worth coming back to diet, and all the support is there.

Andrew Schorr:

Well said.  On an earlier program we had Greg Schlosberg on.  He was the guy who was eating steaks because he was working on being a weight lifter, also from Chicago.  And he was having trouble reading a book, and he eats books for breakfast along with all his PKU diet and his pills, and he’s a changed man.  So we’ve heard this story time and time again. 

Matt Arch, I want to thank you so much for being with us.  Thank you for really being eloquent today because this program and all our programs live on beyond the live webcast.  Thousands of people hear them, and I want to thank so many people in the PKU community just scouring our library of information, and I’m delighted that Patient Power can do this.  Matt, all the best to you.  I want to thank you for joining us. 

Matt:

Thanks.

Andrew Schorr:

All the best.  And, Maryam, so what would you say, you must hear people like Matt and recognize that it takes kind of determination and courage to make this change.  You must admire them. 

Ms. Naziri:

Oh, most definitely.  To see somebody who has really transformed their life, it’s definitely great to see and great to be able to be a part of and provide support.  And again I encourage, just as Matt did, anyone who is thinking about returning to diet or has questions or apprehensions definitely to, you know, potentially it’s just a matter of picking up the phone and breaking that initial step and getting in that way.

Andrew Schorr:

Right.  Well, all the best to you.  Maryam, thank you for the devotion of you and Heather, who has been on our programs, and Dr. Burton at Children’s Memorial and then your adult program.  Rich Dineen at the University of Illinois, I’m going to give the last word to you.  What do you want to leave adults with as far as encouraging them to get back in the management of their PKU? 

Mr. Dineen:

I guess just start focusing on the things that might be holding them back from looking into it further and thinking of Matt as an example of how he was able to overcome some of those reservations and has been able on the other end to really improve his life.  I think really to use Matt as an example of how it helped him.

Andrew Schorr:

All right.  Well, Rich Dineen from the University of Illinois Medical Center, thank you.  Thanks to Mary Lewinski, your colleague, who was with us as well.  We have all these favorites who have been with us, people devoted to helping you manage PKU whatever age you’re at. 

Now, I just wanted to remind you that we’ll be producing these powerful patient videos with new people who we haven’t featured before with PKU, and we’d love your suggestions, and you can even send in a video yourself right on our website.  So look for submit a question, submit a video, submit a story.  Let’s really have you right from the grassroots, wherever you may be in the world.  And I want to thank the folks who have written in to say that our programs have made a difference.  Bonnie and a grandmother who said that we’ve been helping her with her grandchildren who have PKU.  Claire, I believe it was from Ireland who wrote in, thank you.  It really means a lot to us. 

Now, remember, we’ve got three more live webcasts coming, and the next one is April 13th.  So take a look at that.  And, as always, I’m just thrilled that you could be with us today.  Tell others about it, and we will back with you in just about a month.  We look for your questions. 

Remember, knowledge can be the best medicine of all.  And I’m so thrilled that Matt’s doing well, and I hope we’ve made a difference for other adults throughout their living with PKU so you can get back and get the care you need and deserve.  Thanks for joining us.  Good night. 

Please remember the opinions expressed on Patient Power are not necessarily the views of BioMarin, our partners, or Patient Power.  Our discussions are not a substitute for seeking medical advice or care from your own doctor.  That’s how you’ll get care that’s most appropriate for you.