Resistance Is Futile

Sometimes I think it is a sin ‘mature’ folks – those of us of a certain age, as it were – have to jump through all the government, medical and otherwise hoops we have to jump through and other times I believe it is only the older people who have developed enough social skills and understanding to actually navigate this mess!

Case in point, the transit company had me going to school instead of the office today. The scheduler argued I had told her wrong. There was no way to prove who said what, so I just capitulated. I am not fighting a “he said – she said” battle at 6 am. Never had these problems when I drove myself! May have tried fighting with her when I was younger.

Now I take a page from the Borg – you Star Trek fans remember “Resistance is futile”. Better to hunker down and prepare for the next time.

I also continue to navigate the straits and narrows of the research organization. Having no pilot to tell me where the sand bars are, I have been pretty uneasy about getting hung up by some wrong move or wrong word.

After my friend accused me of lack of motivation, she made me promise to try calling the pharmaceutical company and see if they could shed some light on this. Fat chance. I get so tired of being given the bum’s rush by receptionist types! I am not a bum!

Since the receptionist chickie (sounded about 22) kept saying I should talk to the research facility people, I decided to set up another appointment with Regillo. This will be #3, guys.

Stubbornness can be a virtue. When it is, it uses the pseudonym persistence. I guess Someone decided to reward me because after chatting amiably with the (older than a chickie) receptionist there, I got transferred to a researcher at a different facility.

According to this lovely lady, the second study has run the first batch of subjects and is now monitoring them. The second batch goes in the early Spring. Asked who decides who gets into that second batch, she threw Regillo under the bus – metaphorically speaking, of course. My target will have to be Regillo. He is my gatekeeper.

Target identified. Phasers locked on. I now need to convince the man to move me up the list. Sigh. Never knew this lab rat business could be such hard work. And I am not even in the study yet!

A couple of secondary gains were these: I asked the researcher at the other facility to remember me if she does any dry AMD work (doing wet now) and she put the conversation in my record. A couple of hours later I got an email with an ‘official’ update. Maybe showing interest in another researcher was a good plan? Make whom you are really interested in a little less complacent?

So that is the update. Regillo in two weeks. I am thinking this may be my second level job interview. Wish me luck!

Continue reading “Resistance Is Futile”

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 0/5
Applies to topic
Avg: 0/5
Helpful to me
Avg: 0/5
Resistance Is Futile
Total Avg Rating: 0.00 out of 5 with based on 0 rating(s)
Overall quality
Applies to topic
Helpful to me

Opening a Window

I am hoping that when God closes a door he opens a window.

After finding out the researcher I had been dealing with had left, I called the institution and sort of felt I got the bum’s rush: don’t call us; we will call you. Research to start in a few months. Oh, yeah?

Thank goodness I am the persistent sort. (Who? Me?) I was not feeling quite right about the situation and called again today. I talked to a lovely young lady who informed me everything with the stem cell research has sort of fallen apart! ‘Reworking’ the stem cell line apparently did not mean just changing a few small things. It meant changing the entire protocol!

Changing the entire protocol is essentially going back to step 1. The staff needs to be trained in the new standard procedure. Then the research goes back to pre-clinical trials. That means they are back to real rats for lab rats! Clinical trials, those that use rats who stand on two legs, won’t start for over a year, maybe two. Yippee skippee.

Since I know we are all highly responsive and adaptable people, I am sure you would have done what I did. Precisely? Bitch about being given the wrong info and start looking for plan B. Going blind here. We need to move a lot faster than this. What else is available?

Turns out they have a study in progress. It does pay to inquire; doesn’t it? The study is also phase 2. Remember phase 2 is one step above safety and tolerability. That is the stage in which they see if you will survive and, if you do, will anything really weird or harmful happen to you. Stage 2 measures if anything actually happens with the treatment. Is there a discernible effect?

This study uses adult stem cells. There is a nice blurb on the phase 1 trials that Lin found for me. It is through the Macular Degeneration Partnership and is titled Adult Stem Cell Therapy for Dry AMD. The 33 people they used in phase 1 had some very nice results.

I asked the research staff to see if Regillo would refer me for this study. I got my answer less than five minutes later. Either he does not remember me at all and is just collecting warm bodies or I made an impression 😇.

Be that as it may be, I got the ‘informed consent’ packet so I can read exactly what the protocol for this study is. Find out what I need to know.

I am hoping things move quickly. I have been waiting for some movement for over a year now and the longer I wait, the worse my vision becomes. You folks know how that goes.

So, hoping for a window to open soon. Even if it’s an attic window. I will find a ladder! Time to get moving on this treatment thing. Continue reading “Opening a Window”

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 0/5
Applies to topic
Avg: 0/5
Helpful to me
Avg: 0/5
Opening a Window
Total Avg Rating: 0.00 out of 5 with based on 0 rating(s)
Overall quality
Applies to topic
Helpful to me

The $64,000 Question

I ran into one of my DBT students today while I was at work. He asked me what in  ‘olden times’ would have been the $64,000 question: “When are you getting into that study?” Excellent question! I would like to know the answer to that one, too. After all, I have been referred twice – count them, twice! – and I have been waiting seven months.

Did I tell you Regillo had said the hold-up was at the corporate level? He said that the stem cell company, Ocata, had been bought out. Sorry if I forgot to say that.

Anyway, since I had a little time I decided to do a little investigation. I love my iPad. In some ways it is the world at your fingertips. After I typed in ‘Ocata acquired’ I got a number of hits. The earliest one was early November, 2015. It appeared that somebody named Yoshihiko Hatanaka of the Astellas Pharma corporation was talking to Ocata President and CEO, Paul Wotton, about a buyout. Ocata was described as a biotechnology corporation developing new regenerative medicine treatments to address unmet medical needs. Unmet medical need? I think they are talking about me!

Another article from the next day reported Astellas had purchased Ocata for $379,000,000 CASH on the barrelhead. (I told some people to invest in Ocata. It looks as if I was right!)

Astellas’ American subsidiary, Laurel Acquisitions was supposed to go out and buy back shares of Ocata from private shareholders in the company. This was the only way the deal could go through. A little research let me know that buying up the stock from private stockholders is called ‘tender’. Learn something new everyday.

Apparently the buy back required a time extension and was not completed until the beginning of February, 2016. At that time the merger was accomplished.

I have not found any mention of what is happening with Ocata/Astellas since the end of February. My search did not turn up anything for March at all. Maybe they are just lying low and changing the name on the stationery or something.

Do I understand the corporate world? Absolutely not. Some of what I read said this was great for Ocata because the merger gave them a good financial base. Pfizer is supposed to be coming on strong and the capital Ocata now has access to will help them stay competitive. Good for them.

Good  for me? I have no clue. Maybe Wills will call next week. “Study is ready to go!” Maybe it will be years. Who has years when you have a degenerative condition? In a bit of a hurry here!

Although I am not terminally naive – I pretty much know that money makes the world go ‘round – I find this all discouraging. Good people doing good work are being held up while someone else plays Monopoly.  Maybe not totally fair but that is how it looks from my perspective.

Probably should call ‘my’ researcher in Philly and find out what the word they are hearing is. See what else is happening at Wills. Who knows? Maybe Pfizer needs a good lab rat! Continue reading “The $64,000 Question”

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 0/5
Applies to topic
Avg: 0/5
Helpful to me
Avg: 0/5
The $64,000 Question
Total Avg Rating: 0.00 out of 5 with based on 0 rating(s)
Overall quality
Applies to topic
Helpful to me

Crazy Like a Fox

The day comes for me to go to my second appointment with Regillo. I ‘dress for success’ for these appointments. Some people may think putting on a professional-looking skirt and pantyhose and doing my makeup for a doctor’s appointment is a little crazy, but I think of myself as being crazy like a fox.

I ‘dress for success’ for the appointment with Regillo. Some say I’m crazy but I think of myself as crazy like a fox.

I can be a manipulative little thing when I want to be. People think of manipulation as a bad thing. It has gotten a bad name because people think that manipulation is always for the agent’s own gain and always hurts the person who he (or she) is trying to manipulate. That is far from the truth. There is something called  ‘positive manipulation’. Your mother used it on your when she told you “here comes the train! Open the tunnel!” so that you would eat your smashed peas. You have used it yourself. We just don’t like to admit it because manipulative has been paired with words like evil and conniving in our culture. Everyone of us is manipulative. Some of us do it with finesse and some are heavy-handed. It is simply a matter of style…and training.

DBT Interpersonal Effectiveness Skills teach us that as long as you are not hurting others, not being dishonest, etc, using finesse and certain strategies is perfectly acceptable to try to get what you want. The goal of interpersonal effective is getting someone to do something for you and that person feeling good about having done it.  Win-win. And yes, it is positive – gasp – manipulation.

As long as you are not being dishonest or hurting the other person, manipulation is a perfectly acceptable skill according to DBT.

Another reason I dress up is related – sort of – to the IMPROVE (another acronym) the Moment Skills of DBT Distress Tolerance. I am trying to improve the way I think of myself and the situation. Putting on ‘good’ clothes reminds me I am a professional and have a few strong points. The saying is “clothes make the man”. They also make the woman.

“Clothes make the man” and the women. I’m reminding myself that I am a professional and a few strong points.

So, I dress for success because whether anyone else realizes it or not, this appointment is a job interview. I am interviewing, once again, for the job of lab rat.

I have been anxious about this appointment for days. I am not sure what the decline in my vision will mean –am I no longer qualified for the study?

After the usual round of screenings by technicians, I finally rotate around to the man himself. Regillo confirms there has been significant cell atrophy – read ‘wasting and death’ – since I last saw him in August. He calms my fears that I may have done this to myself. No, this was a natural progression of the disease. No external factors such as sunlight reflected off of the snow or my high blood pressure would have caused this to happen. This is good. I can now at least get rid of one concern. I have been declared not guilty.

Regillo calms my fears that I may have done this to myself. I have been declared not guilty.

Just the same, I still have the worry about the study. Will I still qualify? The study is for those with dry macular degeneration only and this rapid loss of vision suggests I may be developing wet AMD.

Regillo runs an IV and puts beta carotene in my veins. I daresay this is the first time I have ever mainlined ‘carrot juice’! Beta carotene is mostly Vitamin A and your eyes lap it up. By watching where the ‘carrot juice’ goes in your eyes and comparing old imagines with new ones, the technicians and doctor can see if my eyes have been creating new veins.

I daresay this is the first time I have ever mainlined ‘carrot juice’! It’s beta carotene & helps the doctor compare old images with new ones.

Thank God. There are no new veins in either of my eyes. I still fit diagnostic criteria for dry AMD and therefore the criteria for the study.

Regillo suggests I refer myself for low vision therapy – already done – and AGAIN referred me to the study. He suggested that he might be seeing me ‘downtown’. I replied he would definitely be seeing me downtown. Regillo just smiled. Or at least I think he did. Do you think I was too confident?

Regillo just smiled. Or at least I think he did. I still qualified for the study and I am confident I will be in it.

Continue reading “Crazy Like a Fox”

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 0/5
Applies to topic
Avg: 0/5
Helpful to me
Avg: 0/5
Crazy Like a Fox
Total Avg Rating: 0.00 out of 5 with based on 0 rating(s)
Overall quality
Applies to topic
Helpful to me

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 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.

Continue reading “Out To Lunch”

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 0/5
Applies to topic
Avg: 0/5
Helpful to me
Avg: 0/5
Out To Lunch
Total Avg Rating: 0.00 out of 5 with based on 0 rating(s)
Overall quality
Applies to topic
Helpful to me

It Just Happens

Technicians are not supposed to tell you what they are seeing on your testing. But if you  are paying attention, you know. The banter gets less, the smiles are forced. You get told “good luck” as you leave the room. They don’t tell you but you know.

My ophthalmologist was somber. My retina photos from four months ago were up on the screen, my new ones were below them. What would have been a divot four months ago was now a crater on my retina. My macula looked as if it had been bombed. In my mind it was catastrophic, sudden self-annihilation. My vision had gone from 20/50 to 20/125 in what I believed was two weeks time. This was my left eye. My right had lost ground but not as drastically. Just the same, for all intents and purposes I had become legally blind.

My macula looked as if it had been bombed. It appeared to be catastrophic, sudden self-annihilation. I was legally blind.

The obvious question was how the devil this could have happened. My ophthalmologist had seen it before, but only in the very old. He conceded I was too young for this to have happened but yet it did. He had no theories. Perhaps I should go back to Regillo. Maybe call the local agency for the blind.

He conceded I was too young for this to have happened but yet it did.

Not knowing why something has happened has never sat well with me. Here I was with questions and no answers and pretty much no way to get the answers. To use the Internet you pretty much have to be able to see.

I contacted a dear friend (who just happens to now be the editor of this website) and put her on the case. Findings were sparse at best. Some sources suggested maybe/perhaps high blood pressure had something to do with it. Most of the sources, however, had no theory at all. The general comment was it happens.

It just happens.

Continue reading “It Just Happens”

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 0/5
Applies to topic
Avg: 0/5
Helpful to me
Avg: 0/5
It Just Happens
Total Avg Rating: 0.00 out of 5 with based on 0 rating(s)
Overall quality
Applies to topic
Helpful to me

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.

Continue reading “Super Lab Rat”

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 0/5
Applies to topic
Avg: 0/5
Helpful to me
Avg: 0/5
Super Lab Rat
Total Avg Rating: 0.00 out of 5 with based on 0 rating(s)
Overall quality
Applies to topic
Helpful to me