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Gary a guitarist and dynamo with multiple sclerosis (MS), smiles at the camera.

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Coffee Talk with Gary & Heather

Gary’s MS journey included a time when he was fairly debilitated.

While he was in the hospital, his partner Heather was there to help encourage him to get moving again. Join Gary and Heather for a cup of coffee and listen to their story to hear how a sense of humor was a big help in staying positive.

00:00

Gary: The following is about my personal experience with MS; others may have different experiences.

Gary: Ok, I think we are recording now

Heather: La,la,la,la! I heard you have a little song you made for us.

Gary: I did make a little song for this.

[guitar strings playing]

Gary: [singing] Waking up late never felt better, but here is Coffee Talk with Gary and Heather.

[guitar strings continue playing]

Heather: You really outdid yourself there.

00:26

Gary: I really did, [laughing], it was a lot of work right there. Alright so we’re going to do something really interesting. So, this is Coffee Talk with Gary and Heather and we’re going to avert our eyes, um, and we’re just gonna, just do a little chat.

Heather: Maybe we could introduce ourselves?

Gary: I think that’s a fantastic idea.

Heather: I’m Gary obviously.

Gary: Obviously! I mean you have a very masculine voice.

[Heather laughing]

00:48

Gary: Ok. My name is Gary, and this is my partner, my hetero-life-mate. Could we go with that?

Heather: That is awful.

Gary: [laughing] That is very awful.

Gary: Heather, hello.

Heather: Hi.

Gary: Hi!

Gary: So we’re just going to do a little coffee talk right here. Question: how do you take your coffee?

Heather: Are we talking iced coffee or hot coffee?

Gary: Either or.

Heather: Well right now I’m drinking hot coffee, it’s dark chocolate hazelnut coffee.

Gary: That is exquisite. Question: do you prefer your coffee at home, or do you like to pick it up?

Heather: I like my coffee everywhere.

Gary: Yeah, yeah.

Heather: Most of the time I try to make it at home to save money, but I am addicted to a certain um…

01:25

Gary: Yeah, I’m addicted to a certain chain too. I usually, on the way home from work, I will stop at this certain chain and I will have my coffee and that usually wires me up for the rest of the ride.

Gary: Who do you usually like to connect with when you’re having that cup of coffee? Or do you connect with someone? Or do you like have coffee and chat with someone specifically or just…?

Heather: Well, I really like it when you and I get to sit like out on the porch and have a coffee together.

Gary: Mhm, mhm.

Heather: But honestly, most of the time, coffee is a solitary affair for me.

Gary: Mhm, no yeah, usually I find drinking coffee in the car is a solitary thing.

01:57

Gary: So you’ve been with me on this journey…

Heather: Mhm…

Gary: …of having MS, but before that, we’ve been together. But having MS, has it changed our dynamic?

Heather: (mockingly, obvious) Oh my God, you have MS?

[Gary laughing]

Gary: Oh no, I didn’t tell you? You never got my text message?

Heather: (more serious now) I think it did change the dynamics at the beginning.

Gary: Mhm.

Heather: So, at the beginning when you first got diagnosed. We didn’t actually live together.

Gary: Mhm…

Heather: We spent a lot of time together, but we didn’t live together.

Gary: Right, right, right.

02:26

Heather: But strangely enough once you couldn’t walk or write your own name, I felt like maybe you shouldn’t be left alone.

Heather: So we all squeezed into your teeny little apartment together. So, I would say the dynamics changed big time at the beginning.

Gary: Yeah but that’s debatable. I could still cook an egg even though I can’t sign my name.

Heather: Could you?

Gary: No!

[Gary laughing]

Gary: No!

[Gary still laughing]

02:48

Heather: I don’t remember you being able to do much of anything at the beginning there.

Gary: I just would like……yeah, it’s true.

Heather: And I, I think that was super hard for you, so you were not the same person either.

Gary: I was very emotional.

Heather: You were…. very emotional and my biggest fear was that you would lose the part of you that I loved the most. The funny part, the silly part, the happy-go-lucky part. I didn’t want the bitter to take over.

Gary: I was afraid of that too, like...

03:15

Heather: Yeah, cause I had an uncle who had MS long before treatments were available like they are now. And he also, he was the funny guy, that’s what we loved about that uncle. He was so funny all the time, he always had us laughing…

Gary: Right...

Heather: And when he got MS, he turned to a bitter, and twisted person that was not somebody we recognized anymore.

Gary: I did have my moments, I think...

Heather: Yeah...

Gary: Yeah, I did have my moments.

Heather: You touched that darkness for sure.

03:43

Gary: I definitely touched that darkness. I’ve been trying to accept it and trying to live with it is much different than, uh, reading about it.

Gary: Did having MS, like change the dynamic in the sense of like, you feel like, do you stop and smell the smell the roses more? Like, do we...do you feel that way?

Heather: I feel like we did at the beginning…

Gary: Mhm…

Heather: I don’t know that we do that as much anymore, but in the beginning, it definitely just put the brakes on our lives completely and we had to reevaluate everything... figure out what was important and what we, you know, were going to focus on.

04:19

Gary: Right, I remember very early on I was very emotional. Remember that... I would just start crying at random intervals?

Heather: Mhm.

Gary: But yeah, it was very odd.

Heather: I think that’s actually another MS symptom for you.

Gary: Yeah.

Heather: You frequently are extremely emotional.

Gary: Mhm. It's just really weird that you kinda like, think about that kind of stuff.

Gary: I mean personally speaking, did me having MS make me stop and smell the roses, and kind of slow down? Absolutely.

04:46

Gary: Because I was always [while clapping] go, go, go, go, go [clapping stops]. Kind of thing. I’m going to burn this candle at both ends and I’m just going to rev the engine as far as I can and then kind of, having MS kind of side-lined me....in a good way because it taught me like, maybe it’s not a good idea to work so many hours or maybe it’s not a good idea to run around and just keep going as if nothing can stop me, cause it can.

Gary: You know, and I think it kind of showed me that I was vulnerable, but that was a good thing.

Heather: Mm. I think it forced you to learn to accept help.

Gary: I am the person that helps, not the person that asks for help.

Heather: Mhm.

05:26

Gary: I think at the very beginning I found a group online and it helped me. There were just times where I would vent.

Gary: When you get to this point where you oof... it’s not about accepting, but when you.... maybe it is accepting. You have that short moment in your life where you really wish this wasn’t your bag. You know, when you wish that this wasn’t something that you would have to share with your partner or your family you know?

Gary: Like you wanted something more private, but you can’t really be private with MS. MS is just MS. You just kind of learn to deal with it. Like my little...

Gary: [stumbles over words]

Heather: That’s another MS symptom.

Gary: [laughing]

Heather: You didn’t use to stumble over words like that.

Gary: Oh, I still can. I still can.

06:08

Gary: I think my little pleasures that I found was a community of people. I think that there is truth in numbers and truth in power and you might not have a good day, but you can have other people’s stories lift you up, and I think that’s really important because then you’re not alone.

Gary: I think that’s the best thing you can do, is just not be alone. Being first diagnosed, I think the first thing I thought is “What?” and “Huh?” and “Oh, so can I take chemo for this?” and...

Heather: I think you thought your life was over.

Gary: Yes.

Heather: I mean, I was in nursing school at the time, so I knew more about MS than you did. I knew it was not a death sentence.

Gary: Mhm.

Heather: I knew it was something that you can learn to live with.

Gary: Right.

Heather: But I don’t think you took it that way.

Gary: No.

07:00

Heather: You took it immediately as “my life as I’ve known it, is over.” and I think we were super, super lucky to find your doctor when we did, we found him very quickly.

Gary: He is a godsend.

Heather: And I think he was really instrumental in sort of beating that mindset out of you. He was so matter of fact about it. He’s like “Yup, you got this, but we’re going to take care of it. You’re going to live a normal life.” And you’re like “Yeah, but...” and he’s like “Nope, nope! If this first medicine doesn’t work, we’ll find another one because there’s medicine out there.”

07:31

Gary: I remember one of the first questions I asked was “Should I start my disability paperwork?” and he’s like “We’re not even going to talk about that.”

Gary: But um, I did feel that my life was over.

Heather: Well I mean, at the time…

Gary: Mhm.

Heather: We should say where you were. I mean you were not able to walk.

Gary: No.

Heather: The left side of your body was pretty much completely useless.

Gary: Mhm.

07:54

Heather: So you couldn’t walk, you couldn’t hold a pen, you couldn’t write. You went from perfectly normal…

Gary: Yeah…

Heather: … to completely debilitated in a matter of a few days.

Gary: Yeah...

Heather: So, I can see why it would be so hard to even be able to imagine going backwards from that.

Gary: Yeah, I mean, I would go in a wheelchair and just go in circles cause my other arm wouldn’t work. [laughter]

08:21

Heather: Do you remember the day that you decided to try walking? It was like, it was like a weekend to your hospital stay that they have been pumping you full of steroids and you had me take you down to the end of that hallway where they were doing construction so there was nobody down there.

Gary: Uh-uh.

Heather: And you started walking a little bit at a time. Crying the whole time, cause you’re Gary.

Gary: When it comes down to it, um, how many years has it been now since I’ve been diagnosed?

Heather: Oh…you got diagnosed in the summer.

Gary: Mhm.

Heather: Was this your third summer?

Gary: I want to say it was, I might be wrong though.

08:59

Heather: Yeah, no, I think you’re right because that summer you got diagnosed, we had all those plans to do hiking. We didn’t get to do any at all.

Gary: I wonder why...

Heather: And then last year we were like “Ok, NOW we can, we can hike.”

[Gary laughing]

Heather: And we were like too busy working to actually do it.

09:15

Gary: Mhm....but we still have dreams to do it. I mean one of my favorite memories of this summer is going to um, that, Angel Falls?

Heather: Mm.

Gary: That was beautiful and having the energy and just going up there, and just going with it. It’s good times.

Heather: Yup.

09:30

Gary: But I mean every day’s a journey. Every day’s an adventure and I get to learn more. Now we get to learn together with the helping hand of…

Heather and Gary: [stated together] …Coffee!

[Gary laughing]

Heather: This episode brought to you by…

Heather and Gary: [stated together] Coffee!

[Gary laughing]

Gary: Well Heather this was awesome to do this, hope we can do this again.

Heather: Sure.

Gary: Great.

Gary: Well, thank you for listening, this has been Coffee Talk with Gary…

Heather: …and Heather!

9:56 [Closing guitar strings played]

See more of Gary's stories

Gary’s First Days of Diagnosis

Gary’s diagnosis made him feel like he’d been tricked into going on a rollercoaster.

Gary’s Infusion Experience

Since he’s taking a step for his well-being, Gary chooses to feel happy during infusions.

Starting a New Career

Changing jobs was Gary’s way of proving he could do anything he set his mind to.

Venezuelan Arepas

A traditional Venezuelan dish and Gary’s childhood favorite, here’s his mom’s recipe.

What is OCREVUS?

OCREVUS is a prescription medicine used to treat:

Relapsing forms of multiple sclerosis (MS), to include clinically isolated syndrome, relapsing-remitting disease, and active secondary progressive disease, in adults
Primary progressive MS, in adults.

It is not known if OCREVUS is safe and effective in children.

Who should not receive OCREVUS?

Do not receive OCREVUS if you have an active hepatitis B virus (HBV) infection.

Do not receive OCREVUS if you have had a life-threatening allergic reaction to OCREVUS. Tell your healthcare provider if you have had an allergic reaction to OCREVUS or any of its ingredients in the past.

What is the most important information I should know about OCREVUS?

OCREVUS can cause serious side effects, including:

Infusion reactions: Infusion reactions are a common side effect of OCREVUS, which can be serious and may require you to be hospitalized. You will be monitored during your infusion and for at least 1 hour after each infusion of OCREVUS for signs and symptoms of an infusion reaction. Tell your healthcare provider or nurse if you get any of these symptoms:
- itchy skin
- rash
- hives
- tiredness
- coughing or wheezing
- trouble breathing
- throat irritation or pain
- feeling faint
- fever
- redness on your face (flushing)
- nausea
- headache
- swelling of the throat
- dizziness
- shortness of breath
- fatigue
- fast heart beat

These infusion reactions can happen for up to 24 hours after your infusion. It is important that you call your healthcare provider right away if you get any of the signs or symptoms listed above after each infusion. If you get infusion reactions, your healthcare provider may need to stop or slow down the rate of your infusion.

Infection:
- Infections are a common side effect. OCREVUS increases your risk of getting upper respiratory tract infections, lower respiratory tract infections, skin infections, and herpes infections. Serious infections can happen with OCREVUS, which can be life-threatening or cause death. Tell your healthcare provider if you have an infection or have any of the following signs of infection including fever, chills, a cough that does not go away, or painful urination. Signs of herpes infection include: cold sores, shingles, genital sores, skin rash, pain, and itching. Signs of more serious herpes infection include: changes in vision, eye redness or eye pain, severe or persistent headache, stiff neck, and confusion. Signs of infection can happen during treatment or after you have received your last dose of OCREVUS. Tell your healthcare provider right away if you have an infection. Your healthcare provider should delay your treatment with OCREVUS until your infection is gone.
- Hepatitis B virus (HBV) reactivation: Before starting treatment with OCREVUS, your healthcare provider will do blood tests to check for hepatitis B viral infection. If you have ever had hepatitis B virus infection, the hepatitis B virus may become active again during or after treatment with OCREVUS. Hepatitis B virus becoming active again (called reactivation) may cause serious liver problems including liver failure or death. Your healthcare provider will monitor you if you are at risk for hepatitis B virus reactivation during treatment and after you stop receiving OCREVUS.
- Weakened immune system: OCREVUS taken before or after other medicines that weaken the immune system could increase your risk of getting infections.
Progressive Multifocal Leukoencephalopathy (PML): PML is a rare brain infection that usually leads to death or severe disability, and has been reported with OCREVUS. Symptoms of PML get worse over days to weeks. It is important that you call your healthcare provider right away if you have any new or worsening neurologic signs or symptoms that have lasted several days, including problems with:
- thinking
- eyesight
- strength
- balance
- weakness on 1 side of your body
- using your arms or legs
Decreased immunoglobulins: OCREVUS may cause a decrease in some types of immunoglobulins. Your healthcare provider will do blood tests to check your blood immunoglobulin levels.

Before receiving OCREVUS, tell your healthcare provider about all of your medical conditions, including if you:

have ever taken, take, or plan to take medicines that affect your immune system, or other treatments for MS.
have ever had hepatitis B or are a carrier of the hepatitis B virus.
have a history of inflammatory bowel disease or colitis.
have had a recent vaccination or are scheduled to receive any vaccinations.
- You should receive any required ‘live’ or ‘live-attenuated’ vaccines at least 4 weeks before you start treatment with OCREVUS. You should not receive ‘live’ or ‘live attenuated’ vaccines while you are being treated with OCREVUS and until your healthcare provider tells you that your immune system is no longer weakened.
- When possible, you should receive any ‘non-live’ vaccines at least 2 weeks before you start treatment with OCREVUS. If you would like to receive any non-live (inactivated) vaccines, including the seasonal flu vaccine, while you are being treated with OCREVUS, talk to your healthcare provider.
- If you have a baby and you received OCREVUS during your pregnancy, it is important to tell your baby’s healthcare provider about receiving OCREVUS so they can decide when your baby should be vaccinated.
are pregnant, think that you might be pregnant, or plan to become pregnant. It is not known if OCREVUS will harm your unborn baby. You should use birth control (contraception) during treatment with OCREVUS and for 6 months after your last infusion of OCREVUS. Talk with your healthcare provider about what birth control method is right for you during this time.
are breastfeeding or plan to breastfeed. It is not known if OCREVUS passes into your breast milk. Talk to your healthcare provider about the best way to feed your baby if you take OCREVUS.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

What are the possible side effects of OCREVUS?

OCREVUS may cause serious side effects, including:

Risk of cancers (malignancies) including breast cancer. Follow your healthcare provider’s instructions about standard screening guidelines for breast cancer.
Inflammation of the colon, or colitis: Tell your healthcare provider if you have any symptoms of colitis, such as:
- Diarrhea (loose stools) or more frequent bowel movements than usual
- Stools that are black, tarry, sticky or have blood or mucus
- Severe stomach-area (abdomen) pain or tenderness

These are not all the possible side effects of OCREVUS.

Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. You may also report side effects to Genentech at (888) 835-2555.

For more information, go to www.OCREVUS.com or call 1-844-627-3887.

Please see additional Important Safety Information throughout and click here for full Prescribing Information and Medication Guide.

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