The Stress of Having Glaucoma
Chat Highlights
March 20, 2002

Norma Devine, Editor

On Wednesday, March 20, 2002, Dr. Rick Wilson, a glaucoma specialist at Wills, and the glaucoma chat group discussed "The Stress of Having Glaucoma."

Moderator:  Welcome,  Dr. Rick.  Tonight we will be discussing the stress of having glaucoma.

Dr. Rick Wilson:  Hello, gang.  How is everyone tonight?

P:  Stressed out, Dr. Rick.

P:  Does stress affect glaucoma?

Dr. Rick Wilson:  All my patients think so.  It is a very subjective thing to test for.

P:  What is Wills doing to educate doctors about needing to talk more to us, explain things?

Dr. Rick Wilson:  We try to do our best to train our residents and fellows in patient communication.  I talk a lot to groups about trying to persuade patients to take their medicine, which is much harder than it sounds.

P:  I find I am getting more stressed every day with all the drops I use.  It takes so long, it is often inconvenient, and I am really discouraged. But I know that is nothing, compared to other situations.

Dr. Rick Wilson:  Do you take your drops 10 minutes apart, interspersed with activities that take that long?  For example keep a bottle of your eye drops by your bedside and use the drops when you get up in the morning.  Keep another bottle of drops in the bathroom to use after your shower.  Keep another bottle of the drops (if you use three kinds) by the refrigerator.  That way it takes only about three minutes to instill the three kinds of drops at the right intervals.

P:  That's a good idea.  Thanks.  I'll try it.  I use five eye drops and have been putting them in my eyes at the same time in three-minute intervals.

P:  I never felt stressed about taking medicine and drops, but the uncertainty of my condition has kept me stressed all these years.  How do you feel about patients taking prescription medicine for depression?

Dr. Rick Wilson:  The medicines we have for depression are quite good -- much better than when I went to medical school.  I have some patients who were changed unbelievably for the better with antidepressants.

P:  Have you ever seen patients' IOPs or other aspects of glaucoma improved by the use of either antidepressants, psychotherapy, or other psychological approaches (e.g., meditation)?

Dr. Rick Wilson:  Yes, one of the patients I told you about had a much more positive attitude that seemed to make a difference in her glaucoma.  Perhaps it was due to just remembering to take the medicine, but she did better.

P:  Are there any tell-tale signs of when eye drops are causing depression versus a stressful lifestyle causing depression?

Dr. Rick Wilson:  The beta blockers and carbonic anhydrase inhibitors are rarely linked to depression.  The only way to tell for sure is to get off of them and possibly onto a prostaglandin like Xalatan or Travatan.

P:  Do patients often have difficulty accepting that they have glaucoma?  

Dr. Rick Wilson:  Denial is a big part of many glaucoma patients' first reaction to the news of their disease.  It accounts for the 15 to 25% of patients who turn in their first prescriptions, but never pick up the medication.  The disease has no obvious symptoms, so it appears that not taking the medication has no consequences -- till a year or two later the patient realizes that he or she just sees parts of everything.

P:  I was guilty of the denial aspect during the time I was merely a glaucoma suspect.  Once glaucoma was diagnosed, my denial ended and the fear began. 

P:  I think I keep my head in the sand a lot.  I can't think too much about what lies ahead.

P:  I think a sense of humor has kept a great many of us sane and lowered our stress.  What do you think? 

Dr. Rick Wilson:  I think a sense of humor and a positive, can-do attitude are essential to handling glaucoma or any disease with as much comfort and confidence as possible.

P:  One way I could reduce my stress level would be to get more frequent IOP (intraocular pressure) checks, especially when I feel I need  to have it checked.  Is there a way that could be provided at minimal cost?  

Dr. Rick Wilson:  Yes.  A good technician could get an accurate pressure reading at reduced cost.  There is a charge on the books for "technician only."

P:  I find myself getting very stressed just trying to persuade family members to get their eyes checked.

P:  I don't feel stressed that much since my intraocular pressure has dropped down to 19 and 17 mm Hg.

P:  I would love to have just one day, or even a half day, that I could take a break and  skip using the drops.  How detrimental would that be?

Dr. Rick Wilson:  That would depend upon how many and what drops you take. 

P:  I take one drop of Cosopt and Alphagan in each eye, morning and night.  Do you think missing a day (or half a day) would be bad if I only did that once a month or so?

Dr. Rick Wilson:  Unfortunately, Alphagan and the Trusopt in Cosopt are two of our shorter-acting medications.  If you had to miss one, I would miss the Alphagan.  It depends upon how much glaucoma damage you have and how tight your IOP control is.  

P:  Taking drops is a constant reminder of having glaucoma.

P:  Would the IOPs of patients using beta blockers be more likely to be affected by stress, because there is more adrenaline to block?

Dr. Rick Wilson:  Beta blockers should help with stress in most people, keeping the heart rate and, to a lesser extent, blood pressure down.

P:  For me, taking drops is a pain, but one of the many bearable irritations of life.  The bigger stress comes from concern about the pace of medical research to discover the root causes and treatment of what we call glaucoma.

P:  Yes, I'd have a lot less stress if Dr. Benowitz would finish his research.  

Dr. Rick Wilson:  Stem cells, neuroprotection, better medicines.  Things are definitely looking up.

P:  Do researchers really feel confident that stem cells may help us?

Dr. Rick Wilson:  YES!  I am enthusiastic about the future of retinal ganglion-cell repopulation and optic-nerve regeneration.

P:  How long will it take to before there's significant progress?  

Dr. Rick Wilson:  Things are progressing well, but would be better if President Bush relaxed his present stem cell lines for therapeutic cloning, so you could contribute your own cells for replenishing your own organs.  Don't get your hopes up for the next five years.  But before ten years, I would expect some tangible benefits from stem cells for the eye, either the retina or nerve, or the outflow tract or drain of the eye to correct the problem there.

P:  How important is aerobic exercise, and how long after exercising do you benefit from lower pressures?

Dr. Rick Wilson:  Exercise is not only a way to lower IOP and improve circulation, it is also one of the best stress relievers known.  This is only a PG (Parental Guidance) site, so we won't talk about the other options.  Exercise has so many positive aspects that I think it is really a cornerstone of a healthy life.  The exercise doesn't have to be all that vigorous to have a beneficial effect.  Even if you exercise sporadically, the IOP lowering probably lasts hours. If you exercise 20 minutes, four times a week, some of the effect seems to carry through to the next exercise episode.

P:  Some patients get two different opinions about treatments from two different doctors.  That adds to stress.  How do the patients decide what to do? 

Dr. Rick Wilson:  Then you have to evaluate the doctors, their reputations, and experience.  Sometimes a third opinion is required.

P:  I mentioned last week that I am hacking at an article about the patient's reaction to glaucoma.  The three major headings describe what I think are the three phases of most people's reactions:  Fear, Frustration and Fortitude.

Dr. Rick Wilson:  That's a good idea, and I think it's fairly true.  What do the rest of you think about those three stages?

P:  I agree with them.

P:  I jumped from Fear to Frustration.

P:  I think those three stages sound right on.

P:  I blend the three.

P:  I agree with them, but I would add "why me?" and a degree of sadness.

P:  Over the years, depending on how I am doing, I have had all three -- Fear, Frustration and Fortitude -- sometimes all at the same time.

P:  Since I gained good control within four months of diagnosis, I have not really been frustrated.

P:  If your glaucoma keeps progressing, the fear phase is one you don't pass through and leave behind.  Fear keeps rearing its ugly head and you contemplate the possible loss of independence.

Dr. Rick Wilson:  That loss of independence is what most frightens my patients.

P:  Fear seems to be the worst part.  I try to ignore it most of the time.  I've used meditation to help me keep focused on what's important.

P:  I like the stages.  Fortitude encompasses a lot.  In the "F" frame, I would add additional strategies in different proportions: Find out as much as you can; Faith; Fraternity (and sorority) with other glaucoma patients.

Dr. Rick Wilson:  Right.  Friends and family are essential in sharing the burden.

P:  As a busy glaucoma specialist, researcher, teacher, lecturer, writer, husband, father, etc., you have had to live with considerable stress.  Is coping with stress easier for younger people than for older people?

Dr. Rick Wilson:  Yes, there was a big difference for me.  I juggled things much more effortlessly then than now.

P:  Dr. Rick, this is off the topic, but I just wanted to say that I was at Wills yesterday for my three-months checkup for the memantine study, and saw you for the first time.  Your picture does not do you justice.

Dr. Rick Wilson:  Thanks.  For an almost 55-year-old, compliments are few and far between, and quite welcome.

P:  Dr. Rick, when my son needed a second trabeculotomy and you told me the odds for success were pretty good, it lowered my stress level a lot, too. Thanks!  By the way, you were right -- so far.

Dr. Rick Wilson:  I hope that this chat room and the experience of the folks here help patients.

P:  I think that coming to this chat room has helped quite a few of us keep the fear under control.

P:  This chat room and the responses of you and the GlaucoMates help provide me with the confidence that my glaucoma specialist and I are doing all that we can do.  As soon as I knew that I was doing the right things, my stress level dropped, because I had no more anxiety about "missing out" on some treatment.

Moderator:  I could not agree more. I have been through some rough times, and without the group, I would not have made it.

P:  I would venture to say that this chat room helps alleviate stress.

P:  I agree with all the above about the chat room.

P:  That and a good Margarita.

P:  Yes, this group, this site, and the Internet, more generally, have been essential.  I can't imagine going through this without that help.

P:  This chatroom definitely helps alleviate stress.

P:  I would be a very ignorant patient without this chat room!

P:  This chatroom and the doctors make it so much easier to cope with my glaucoma.

P:  You all have been my anchor in the storm to get me through the panic stage.

Dr. Rick Wilson:  Your comments make all the time I spend here worthwhile.  Plus, I've enjoyed getting to know many of you.

P:  Thanks to Wills and Dr. Rick.

P:  Gold medals to both!

End of highlights for March 20, 2002.

On March 27, Dr. Werner discussed "Plateau-iris Syndrome" in the Chat room. Click here for highlights of that meeting.

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