macular degeneration, macular, diagnosis Wills Eye Hospital – My Macular Degeneration Journey/Journal

“Wrap Up” Blindness in our Lifetime!

Money! Money, money, money, money…MONEY! (O’Jays- 1973). Healio reported the University of California at San Diego has been given a $50 million dollar grant to found a research center specializing in ophthalmological research. The areas focused on will be glaucoma blindness and retinal degeneration. They are hoping the new center will speed the pace of discovery and innovation. The philanthropist was Andrew Viterbi.

Also in Healio, it was announced Wills Eye has received a $5 million grant to establish the Vickie and Jack Farber Research Center at the hospital. This $5 million from the Farbers comes on the heels of a previous $2 million gift. It also follows up a large grant for the establishment of the Vickie and Jack Farber Institute for Neuroscience at Thomas Jefferson University. The target of future research is to be neurological and eye diseases.

And want to know something crazy? Jack Farber’s corporation has roots in this area, North Central Pennsylvania! If you have ever bought ribbon from Berwick Offray (world’s largest manufacturer of decorative ribbons and bows according to Wiki) or seasonal decorations from Paper Magic, you have contributed to these philanthropic gifts. Cool.

Apparently, the take-home message here is keep wrapping those gifts…lots of ribbons! Let’s “wrap up” blindness in our lifetimes! (Ouch!)

Unfortunately, I am not a multimillionaire, so I guess I have to make my contributions to the cause smaller…a lot smaller. Like prattling along on this page, for example.

Saturday I went whitewater rafting for the first time since I lost my central vision. Now whitewater rafting is not really high on the lists of a lot of people, but I love being on the water and this was one of the things I wanted to do to get back to “me.”

I found a local group of people young enough to be my grandchildren, (if I had any) and I went along with them. Everything went swimmingly – no pun intended and no, I did not fall in. The welcome I got was great. They even suggested I come along caving in December…uh, no, thanks.

Going with them was a tad unorthodox, but sometimes you simply have to do what works. Effectively, that is.

You want to know my biggest challenge all day? Engaging the zipper on my life jacket! It made me realize jacket and coat weather is right around the corner for us here in the northern hemisphere. And I am woefully unprepared.

I looked online for some great wisdom about relearning how to engage zippers after sight loss and I did not find much. The advice they give is the same advice you gave your preschoolers: practice, practice, practice.

So, today’s suggestion is to check your winter coats and see if they have buttons or zippers. You might be a bit better off with buttons (maybe. I misbuttoned a blouse the other day). If you have zippers, now is the time to practice. Asking strangers to help dress you can be a bit humiliating….it was a good thing the girl fitting life jackets was very nice.?

Written September 5th, 2018

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Disappearing Fingerprints

I am back. Yes, we have snow. About three inches. Shirt sleeves and sandals back to ski jackets and mukluks in less than 18 hours.

I am trying to get back into the webinar. When I lose the connection it kicks me right back to the beginning of the session and I have to fight with the scroll bar again. Thinking it may be the friction ridges on my fingers. They are barely there.

This is a real tangential subject – and I promise to get back on topic soon – but many of us are ‘of a certain age’ and might be interested in this. The simple fact is, as we age, our fingerprints disappear. If you ever wanted a life of crime, now may be the time!

No, seriously. They disappear. A few years back I had to renew my clearances and I had to go back to be fingerprinted at least three times. We finally just gave up and declared me safe to work with kids. It was crazy frustrating.

Another Aging Puzzle: The Case of the Disappearing Fingerprints has all sorts of neat info on this topic. You might want to look at it. Especially if you need to be fingerprinted for volunteer work or something. Get you prepared for having to go back and back and….

Back on subject: the article on nine things to think about when considering a stem cell trial. I am still looking at the bullets under the first point so this review might take a while.

Expense was another thing to consider that they mentioned. The last I looked the pay for the trial I want was $75 a day. Holiday Inn Express was giving discounts on rooms if you needed to stay. So basically, we might be able to stay for ‘free’ but meals, gas and wear and tear are going to be all ours.

Knew that. Actually, it is part of the reason I am retiring. Retired I have a pension, a guaranteed income even if I need to spend days in Philly. If you are still working and looking at clinical trials of any type, you will need to consider the possibility of lost wages. Nasty thought but it may need to happen.

Oh, and we have said this before but it is worth repeating:

We do NOT pay to be in stem cell trials or to get any other experimental treatment.

If some ‘doctor’ says he has a great, experimental treatment but you need to pay? Get out of there as quickly and graciously as possible and call your local medical ethics board. There is something wrong and it needs to be looked into.

Second bullet is covered. Yes, we know there are different types of stem cells. There is a whole bunch of science involved here but they have done all these manipulations to be sure the stem cells in my chosen trial are appropriate.

The caveat here is know your provider. Wills Eye Hospital has been ranked the second best in the nation. (What’s first? Bascom-Palmer in Miami.)

Carl Regillo, my retinologist, has credits as long as your leg. Open a page covering an ophthalmology convention and the boy’s picture is there. Too legit to quit…or to do shoddy research.

OK. That covers points 1 and 2. Bye!

Written April 2nd, 2018 Continue reading “Disappearing Fingerprints”

Beware Snake Oil

Happy Sunday to you! Lin and I have been emailing back and forth. Since I have another glimmer of hope about the clinical trials, we have been talking stem cells.

I am very optimistic about stem cells. I have known from the instant I saw the Wills studies on clinicaltrials.gov that it was the way I would be going.

I have not wavered in nearly a year and a half and I am not wavering now.

That said, do you remember when I talked about the three states of mind? I try very hard to stay in wise mind on this issue. Wise mind is the melding of emotional mind and reasonable mind. Emotional mind fuels but reasonable mind guides.

Going online we have noticed a lot of what I can only call testimonials to amazing new treatments. These popular press articles all talk about one person – that was one, 1, uno – person who has recovered his or her sight due to this miraculous, revolutionary new procedure, whatever it might be. To me, it seems stem cells have become the new snake oil.

OK. Now some of you just got your hackles up. Calm down. Sometimes snake oil worked. Not saying it did not. However, until it was evaluated pretty thoroughly we did not know a great deal about what it was, what it could do including harm, etc. Lots of harm has been done in the name of treatment.

For example? Blood letting. A president no one ever thinks of, Rush, was killed by bloodletting. It was an acceptable practice. I don’t imagine many of you have had blood removed to cure a disease but I am guessing you may know one person who has. Bloodletting is a proven treatment for Polycythemia Vera, a condition in which there are too many red blood cells. A treatment may have a beneficial use. We just need to find out what that use is. And we need to do it scientifically…at least in my not so humble opinion.

I am cautiously optimistic about stem cells. I have an internationally known doctor at an internationally known facility. The two studies I am signed up for are funded by large, reputable corporations. I even have the informed consent documents already!

What about you? First of all, I would like to think I could influence you to only go someplace with the credentials Wills Eye Hospital has. If that is not possible, ask questions and do your homework without committing to anything. Remember desperate people are vulnerable people. Also, even if the people you are dealing with are decent human beings, their theories or procedures could be faulty or simply not right for you.

What questions to ask? The American Speech, Language and Hearing Association – of all places – published a very nice list (with extensive links; gotta love those speech teachers!) in What to Ask When Evaluating Any Procedure, Product or Program. Read this. Take a copy with you and ask the questions. If you don’t get decent answers, turn around and walk out. Use your desperation, fears, hopes as the fuel but let your reasonable mind do the steering. Stay in wise mind on this one, guys.


Lin/Linda here:  Sue wrote this in December, 2016.  Yesterday (March 16, 2017) an article was published in the New England Journal of Medicine about 3 women who became blind after stem cell injections for which they paid $5,000 from an unnamed clinic in Florida.  The news spread fast and articles were published and widely shared by large news organizations (NPR, CNN, the major TV stations ABC, CBS, and NBC and the New York Times), by macular degeneration organizations (The Macular Degeneration Partnership, Macular Degeneration Association and The Macular Society in the UK) and by several professional organizations for those in the field of vision & eye care.

What went wrong?  This article Three people left blind by Florida clinic’s unproven stem cell therapy says it best from what I’ve read:

  • First there is almost no evidence that the fat/blood stem cell combination the clinic used could help repair the photoreceptor cells in the eye that are attacked in macular degeneration.
  • The clinic charged the women $5,000 for the procedure. Usually in FDA-approved trials the clinical trial sponsor will cover the cost of the therapy being tested.
  • Both eyes were injected at the same time. Most clinical trials would only treat one eye at a time and allow up to 30 days between patients to ensure the approach was safe.
  • Even though the treatment was listed on the clinicaltrials.gov website there is no evidence that this was part of a clinical trial, and certainly not one approved by the Food and Drug Administration (FDA) which regulates stem cell therapies.

 

Continue reading “Beware Snake Oil”

Best of the Best

I finished a report I absolutely had to do and thought I would go hunting clinical trials again. I am reasonably sure I have applied for what I would be interested in at Wills (although I do check periodically) so I thought I would go a little further afield.

This brought me to the question: where are the most hotshot, acclaimed eye hospitals in the nation? It turns out that question can be answered by U.S. News.

U.S.News ranks doctors in every field. They also rank hospitals. Turns out, according to their ratings under ophthalmology, Wills in Philly is number 2! Try harder, guys!

Number 1 is Bascom Palmer Eye Institute in Miami. They are recruiting for a study on ‘photothermal therapy’ (no clue…yet), ALK-001 for Stargardt disease and also some anti-VEGF treatment for diabetic retinopathy. Bascom-Palmer listed very few clinical trials but one of them might be for you. If you are a Floridian, check it out.

Going geographically, #3 is my next closest option. That is the Wilmer Eye Institute in Baltimore. Wilmer is part of Johns-Hopkins. Wilmer is running the same ALK-001 study as well as some stuff on oxidation stress. Unfortunately, they did not have anything I was interested in. Back to the search!

Mass. General’s Eye and Ear Infirmary in Boston came in #4. Not a realistic commute for me. Neither are UCLA Medical Center or Duke University Hospital. That is Durham, North Carolina, by the way.

#7 is in Iowa City and affiliated with the U. of Iowa. #8 is Cleveland Clinic. #9 is W.K. Kellogg Center in Michigan and #10 is in the Big Apple. The New York Eye and Ear Infirmary to be precise.

New York did not have anything that enticed me. At least not in the way of clinical trials. They are recruiting for a numbers of studies for those with wet AMD. If you go there, take some time and see a play for me. Or go to the Metropolitan Museum of Art. These may be touristy things to do, but I have always enjoyed them.

The search of 9 of the 10, best hospitals yielding nothing, I went back to check Wills. I got a scare there. I had to search for my second study (Remember my first option is back to using real rats and is no longer recruiting). It turned out ‘my’ study was listed 293 out of 363 studies. Thank goodness it was listed as recruiting with a current date. There seems to still be hope!

It appears whatever Fates are moving me, they are still pushing me towards Wills. So far that is my clinical study destination, if anywhere at all (and we all know how stubborn I am so it will be somewhere). Hopefully I mention a great hospital that may be an option for you. Good hunting! Continue reading “Best of the Best”

Out To Lunch

So here I am in a holding pattern. Some of these things are like the Army. My father used to say his experience in the Army during WWII was a series of hurry-up-and-wait experiences. I find that true of all bureaucracies.

So, I am waiting to see Regillo again, Rock Star of Retinas and Wizard of Wills. I am waiting for my referrals for services to come through so I can get started on returning to a life that looks like the one I just lost and is “a life worth living” (a DBT Goal Definition depending upon whose life it is). Did I mention I have no, zero, nada, none patience?

I’m in a holding pattern. Did I mention I have no, zero, nada, none patience?

Here I want to send out kudos to people. Just people in general, although there are also some special people in the mix, too. I is a psychologist: I is. I get a kick out of people.  I love their strengths and their foibles (especially their foibles) and their warmth. I know a lot of people and, hard to believe, some of them actually like me. In the last month I would not have gotten along without my ‘peeps’ (or is that only the spelling for chickens?). Not only did Lin and Dave embrace this work of therapy and do most of the work to make it a reality, other people in my life have come through for me big time. My husband has been ‘driving Miss Susie’ all over God’s green acre, class members have been giving me rides to my exercise programs and people have been inviting me to activities. You know who you are and I thank you.

Thank you to all who have been driving me, inviting me, helping me. You know who you are.

I have become the ‘out to lunch lady’. OK, those of you who know me know I have always been a bit ‘out to lunch’, but these times I am actually eating. People are taking me to lunch and getting me OUT.  One of the DBT Distress Tolerance Skills is ACCEPTS (another acronym I’ll explain). The A is for activities.  A lot of time to sit around and think about everything that is going wrong is not good for anyone. Getting out and about and – for even just an hour – forgetting that all hell is breaking loose in your life is great therapy.

ACCEPTS is a DBT Distress Tolerance Skill.  A is for Activities.  I go out to lunch, a lot! And other activities, too.

I have been working hard to maintain my exercise class schedule. I have begged and cajoled and pleaded for rides – often without the necessity for all of those dramatics – and I have volunteers who will take me. I have been to a concert and gone to play in the park. And, yes, I have been out to lunch, a lot!

Acute crisis (is that redundant?) or long-term adjustment to a truly crappy turn of events, the purpose of the Distress Tolerance Skills are just to get you through. They may not be pretty. They may not be elegant and they sure will not solve the problem but they get you through without doing any more harm.

More harm. A lot of what we do in lousy situations does more harm. The obvious ones are things such as abusing substances and beating up on the people we should be reaching out to. The less obvious ones include NOT accepting that things have really gone wrong and somehow you have to deal.

A lot of what we do in lousy situations does more harm. The less obvious ones include NOT accepting that things have really gone wrong and somehow you have to deal.

There are some cute little sayings in DBT that are easy to remember. One of them is “what we resist, persists.”  Another one is “acceptance does not mean approval”.  You don’t have to approve of a turn of events in order to accept that it happened. Trust me. I am very disapproving of what has happened to my vision.  However, if I don’t accept the reality of the situation, how am I going to make things any better? I could have denied that I cannot see well. Kept on driving and killed someone. I could have kept on working and making mistakes. That would have hurt clients and destroyed my professional reputation. If I resisted the reality of having a vision loss, the problems would have persisted and gotten worse. At least this way I am taking steps, working with a professional to hopefully allow me to see better.

If I resisted the realty of a vision loss, the problems would have persisted and gotten worse.

I will revisit the concepts of Distress Tolerance as we go along. Right now let me get back to the original concept of this posting: I love people.

One of the BIG problems with AMD for me is not being able to see faces from a certain distance. I had an acquaintance tell me I had walked right past her and had not acknowledged her. It had me in tears because I truly do not want to offend people nor for people to think I am a snob.

I am discovering that having AMD visual impairment is a dilemma. My vision is good enough that I can navigate pretty well. I appear to be fully sighted….and blowing them off. I considered finding some way of identifying myself as partially sighted but I have not come up with any good ideas. Wearing a sign appears to be in bad taste and buying a white cane would be disrespectful of those who truly have serious vision loss. I thought about those black, black glasses but my sense of pride and my sense of style joined forces and rejected that idea in short order.

A BIG problem is not being able to see faces from a certain distance.

The idea I have chosen is simply to TELL people. I am a talker and this is a small town. Word travels at the speed of light. I have also swallowed my pride and have gotten into the habit of  – when necessary – identifying myself as visually impaired. Bitter pill to swallow because it means changing my entire self-identification and admitting the tough girl needs some help. However, it has gotten easier and it does work.  People are generally pretty kind.

I appear to be fully sighted. I have chosen to simply TELL people.

One of the Cs in ACCEPTS is comparison. The bitter pill of admitting to a visual handicap is a lot easier for me when I do a comparison. Do I want to withhold the information and look ditsy and stupid? After all, the information is probably posted right in front of my nose. Or is a visual handicap a better reason? Ditsy and stupid or visually impaired? You compare. You chose.

Taking from another DBT module, Interpersonal Effectiveness, I want to say something about how to ask for what you want and/or need. Social scientists have discovered that simply giving a reason, no matter how inane, will make people more likely to do something you would like. It could be as stupid as asking to move to the front of the line at the snack bar because you want a hot dog. Works better than you would ever believe.

The DBT skill Interpersonal Effectiveness says that you need to ask for what you want and/or need.

Written in February 2016. Reviewed September 2018.

Continue reading “Out To Lunch”

Super Lab Rat

So now I am reasonably sure I have a shot at becoming a test subject. Never really believed one of my greatest ambitions in life was going to be to become a lab rat. However, I can assure you I had ambitions to be the best damn lab rat Wills Eye has ever seen. My visual gains will be extraordinary! I will become spokes-rat for the program and travel around the area doing the ‘rubber chicken’ circuit. I will be brilliant. (Did I happen to mention I have no problems generally with my self-esteem? Perhaps…can you spell megalomania?) I even designed my t-shirt. It includes a drawing of a cute little mascot that will, of course, represent the hospital for decades to come.

I will be the best damn lab rat Wills eye has ever seen! I’ll become spokes-rat for the program and travel around the area doing the ‘rubber chicken’ circuit.

I did continue my research. I wanted to know what exactly I was getting into. I’m not one for invasive procedures or even for a lot of ‘doctoring.’ However, assuring vision for myself in the future tended to trump all other considerations.

Although Regillo tended to gloss over some of the more gory and unpleasant details, I wanted to know. My source was the 2015 Lancet article on the Phase 1 experiment.

Let me go off on a tangent here for a moment. Until I got into this, I had no clue what happens in clinical trials. Short tutorial if I may: clinical trials are made up of four phases. The first phase is a safety and tolerability phase. Essentially, the researchers are looking to make sure that nothing serious goes wrong. They want to make sure that no one has an allergic reaction or grows stray body parts where they should not be growing.

In Phase 1 they want to make sure no one has an allergic reaction or grows stray body arts where they should not be growing.

After Phase 1, the efficacy experiment starts. They want to see how their treatment actually works. Does it do what they claim it will do? They also start messing around with different independent variables to see what works best. In the study I am trying to get into, for example, they are comparing different immunosuppressant drugs to see which one works best. In other Phase 2 experiments they compare slightly different operation procedures or any more of the dozen of different treatment variables. All Phase 1 studies use only a very small number of people, Phase 2 studies use many more.

In Phase 2 they want to see how their treatment actually works.

As I understand it, Phase 3 studies are essentially larger variations on Phase 2 studies. Techniques and procedures are refined and the subject pool is made up of hundreds or even thousands of people.

In Phase 3 they perfect the techniques and procedures on more people.

Phase 4 is sort of like an off-Broadway show or traveling company. Instead of just being administered by people at the experimental sites, the procedures are now made available to other professionals to try. Reports are made back to the original team. By this time, the subjects can number in the thousands. Once a procedure gets through Phase 4, it is ready for prime time. If good enough, it can become standard procedure around the globe.

In Phase 4 they make their procedures available to other professionals to try at other locations.

Written February 2016. Updated 2018.

Continue reading “Super Lab Rat”

Where All Roads Lead

So, did I mention that I was told there is no cure? Those of you with wet macular degeneration can be given shots. They actually sound rather disgusting but seem to work. The purpose of the shots is to slow the growth of new veins. This will help reduce the bleeding in the eye.

Dry macular degeneration has no cure. That is, it has no cure yet. Having the personality I have, taking “no” for an answer or taking “I don’t know” for an answer is simply unacceptable. That was why I put so much effort over last summer into finding another way out of this mess.

I don’t take “no” or “I don’t know” for an answer.

Fourth of July, 2015 was a rainy, dismal affair. For some unknown reason I picked that miserable day to throw myself a pity party. I sat imagining what it would be like to be blind. I sat imagining what it would be like to be handicapped and pretty much alone. After about four hours of this, I got bored. Blind was not for me if it was going to be so damn boring. Consequently, I made a decision. I was not going to go blind and if I were to go blind, I would crash and burn in the most spectacular fashion you have ever seen.

If I were to go blind, I would crash and burn in the most spectacular fashion you have ever seen.

It was after this bit of epiphany I started to seek treatment in earnest. My ophthalmologist told me probably the best chance of a cure was in stem cell therapy. However, stem cell therapy on eyes was in its infancy. They had run so few people through the procedure there was no way of knowing for sure what was going to happen.

I was sure of one thing: Age-Related Macular Degeneration results in central blindness. There are no maybes. It will eventually happen. Enrolling in a study would give me a chance. The chance maybe only 1% but it was 1% more chance than I had doing nothing.

AMD results in blindness of the central vision. I was sure of this one thing.

Also, when you hit a certain age, some people like to leave a legacy. One of the developmental psychologists had a name for this stage in life but I don’t remember what it was [Editor’s note: Erik Eriksen] Essentially, this time in my life is one during which I should give back. I should lead those who are younger. I should contribute. This was going to be my chance. Great secondary gain. I wanted to save my damn sight.

I wanted to save my sight but I also wanted to lead those who were younger.

There are sometimes I believe the Universe—capital U–is showing me the way. I would look at eye drops and come back to stem cell research. I would look at oral medication and come back to stem cell research. I would look at laser treatments and, yep, come back to stem cell research. The writing in the stars was pretty obvious. I was going to get into that study one way or another.

The study I chose was a stem cell study replacing dead and worn out RPEs. This particular study is being done on both coasts. At UCLA medical center the lead researcher is Stephen Schwartz. The lead researcher on the East Coast is Carl Regillo.

The lead researcher for the stem cell therapy is in Philadelphia which is a day trip for me.

Never heard of him until I started doing my research. Then I realized the man is a rock star of retinas. Regillo has over 700 publications to his credit. He has been named to the best physicians in America list at least eight years running. But just about the best thing about Regillo? He is practically right in my own backyard! Regillo is a mover and shaker at Wills Eye Hospital in Philadelphia.  Philadelphia for me is a day trip. Even better, the good doctor has an office in Bethlehem, perhaps about 2 hours away. Yet better, I got an appointment within three weeks of asking and they took my insurance! So far, it does not get any better than this.

Carl Regillo is at Wills Eye Hospital in Philadelphia & has an office in Bethlehem, perhaps 2 hours away. And I got an appointment within 3 weeks of asking & they took my insurance. So far, it does not get any better than this.

Written in February 2016. Reviewed September 2018.

Continue reading “Where All Roads Lead”