My Macular Degeneration Journey/Journal
From Diagnosis to Decision – June 2023 Since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you'll get some pages 'not found' or 'private' until that decision has been made. The emphasis for several years has been on the Facebook group.
It’s no secret that the biggest problem that Sue has is transportation. She uses a shared ride van service where the scheduling often means that she is picked up ridiculously early or is dropped off late to work. It makes her angry, frustrated & resentful. How should she deal with this?
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
Once again, I sent Sue an article with research that makes her think about something in her lifestyle. This time, it’s an article about how fats may contribute to AMD. Sue’s honest about her diet, she’s shared that her 2 favorite ingredients are fat and salt. Summer for her means fresh tomatoes which leads to bacon, lettuce and tomato sandwiches (BLTs for short) with…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
There are several medications being researched to treat geographic atrophy. We are keeping track of their progress. In the meantime, beware of emails asking for money like the one Sue got from…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
At present I am waiting for the van….again. These pages seem to turn into one big tirade about the truly crap public transportation we have in this rural region.
I got up to get a 6:54 am van to work (having told them I need to be there at 8:30) and I just got the call it would be another 45 minutes until they arrive. Really?!?!? This is on top of being told they could not bring me home Saturday because my seminar is in another zip code, 5 miles away.
I am angry. I am frustrated and I am resentful. Resentment is defined as bitter indignation. It implies unfair treatment.
From the complaints I have heard from the other people who ride the vans, I suspect I am not being discriminated against. Everyone is getting the same lousy treatment. Just the same, it is not fair!!!!!
Yes, I know fairness is an illusion. I know resentment is, as published in Psychology Today way back in 1995, futile and destructive. I am aware my resentment is most likely disproportionate to the damage that has been done. I am still pissed!
Psychology Today goes on to talk about how resentment is based on internal need rather than external circumstances. If I did not believe I DESERVED better treatment, would I be as resentful? I would say not. I am arrogant enough to believe good things should come to me almost all of the time. Having those ‘shoulds’ in my head sets me up to see things as unfair.
Resentment gives us a target for our frustrations. “This damn transportation company is to blame for my life not being easy! I could do so much more if I only had decent support!” Resentment allows us to forget that while things are caused, sometimes we are not staring at the cause face to face. Things could have been set in motion a long time ago. Your ‘injustice’ may be just another domino ,’victim’ not the agent that set things in motion. Easier to assign blame to what you can see.
So, recognizing that venting my spleen (who said THAT, anyway? Shakespeare?) at the van people may not be productive, I went online and found a couple of articles. PsychCentral.com pushed the empathy angle. Remember “walk a mile in his shoes”? It helps to look at the other party’s viewpoint, their situation. Are they doing the best they can under the circumstances? Psychology Today suggested something’s that sound, well, rather DBT-ish. They suggest you observe your resentment and sit with it for a while. They also suggest relaxation and self-care.
DBT as one-step shopping?
If I actually try to practice what I teach, I would have to admit rehashing all of the nonsense with my transportation situation is not being mindful in the present. The only thing I can deal with is the now. I should also practice some gratitude. Do I have a lot of freedom because the system exists? Yep. May not be exactly the way I want it to work, but it works…sort of.
So, in consideration, perhaps I should be a bit more tolerant. Deep breath…I feel better now. Thanks for listening!
written 9/22/2017
This page falls into the category of pet peeves! Do YOU have any?
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
Sue thrives on being busy & solving problems. She asks “How can we maintain challenge and accomplishment in our lives now that we are older and have a vision loss?” Her answer is no surprise to those who know her…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
After Sue’s last appointment with Dr. Carl Regillo at Wills Eye Hospital in Philadelphia, we reported that she would be getting an injection of lampalizumab (“lamp stuff”) in December 2017 that would be part of phase 4. Since then we’ve found articles that are saying that phase 3 won’t end until 2019! We are…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
Sue writes “Looking into the basics of getting around and doing what you can to get – and keep – your finances in order is crucial.” When to do this?
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
Do you know that there are medications that can cause vision problems? There are!
If it becomes time that you need help with your daily life, assisted living facilities are an option.
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
Sue writes “Go for your shots. Investigate changes in your vision immediately. Hard to get more basic than this.” She says this (among other things) is a…
If you’ve been following Sue’s journey, you know she tries to do what she can for herself and asks for help when she needs it. When a co-worker got upset with because she didn’t think to offer to help Sue, Sue didn’t know what to say or do to help that person feel better about herself. There really out to be a…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
Are you still caring for children AND your aging parents? That puts you in the ‘sandwich generation’. Or are you taking care of a spouse or sibling? And what about the people who take care of us when we need it? For all these reasons, we need to watch for…
Current research is showing that there are several genetic reasons for the development & progression of AMD. Sue says “I admit defeat! Maybe I can study genetics for a decade and come back for a rematch.” She declares…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
When someone is diagnosed with macular degeneration, many people fear that they eventually won’t be able to do the things they enjoy. We’ll be talking about some of these things. First, it is…
Sue asks the question: Can people still be happy after vision loss? She says “…happiness is limited because we allow vision loss to rid us of dreams and things to look forward to.”
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
There are many things that are annoying when one’s vision is impaired. Here’s one…
We know that many of you are trying to conceal your vision impairment from co-workers, friends, family. Are there ways of…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
What does the term ‘bucket list’ mean to you? Things to do before you die? Sue talks about having at least two of them: one for the things you need to do to get through the day and the second for the dreams that you have.
Age-Related Macular Degeneration (AMD) is not the only disease of the macula, we know that some of you have a disease commonly called…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
It used to be that the Amsler Grid was the only way to monitor your vision. Sue talks about the other ways to…
It’s hard enough for people with ‘normal’ vision to read the small print on a medication bottle, what do you do if your vision is impaired? There are ways to help in…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
Lin/Linda here: I am having difficulties with the software I use to maintain the website. I will be sending a few posts from days past that I do not think went out. Sorry for filling up your inbox!
Sue’s transportation system continues to schedule her with lots of time to spare some days. This day it started a mini pity party for her along with the not-so-good news that one of the 2 parallel clinical trials of lampalizumab didn’t meet its primary endpoint for the 1st of the 2 trials. Unfortunately, both Sue & the research hit some…
On the plus side, Sue found a review article that highlights the…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
Sue admits that her life is cluttered. Things like doing laundry and ironing bring challenges for those with visual impairment. Sue offers suggestions for…
There’s conflicting information about whether there’s a relationship between cataracts and AMD. They are both diseases where the risk increases with age. Read more about…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
One more very rainy day. Could be worse. We could be in Texas or Louisiana or Florida or on one of a dozen plus islands in the Caribbean. Definitely could be worse. [Lin/Linda: or Georgia.]
No hip hop class Monday evening because of the holiday. No class last evening because it was thundering and ‘lightning -ing -ing’. Can’t have yoga outside in those conditions.
Consequently, I have already started with a raging case of cabin fever….and I even worked seven hour days yesterday and today! What the hey?!?! Activity junkie here. Jonesing for my activity fix. Pitiful.
Good, bad or indifferent, when I am bored and frustrated I research. Then I write. I am always amazed at all of the research happening on macular degeneration.
Found an article that summarized a fair amount of the work that is going on. This time the Italians made the contribution. Doctors from Milan and Verona wrote Recent advances in the management of dry age-related macular degeneration: a review.
The authors broke down the research into methods of attack. The first area mentioned was nutritional supplements and the AREDS research. Since we have gone over that ad nauseuam, I am going to just mention it and move on. AREDS. ARED2 . Mentioned. Moving on.
Anti-inflammatory agents were next. The first one mentioned was Iluvien. Iluvien is a treatment for diabetic macular edema. It might also be helpful for AMD but the part I want to point out is the delivery system. Iluvien is injected once every three years!
Available in the UK and Germany as of 2014 and FDA approved that same year, Iluvien is delivered in a teeny, tiny little tube that is inserted into the back of the eye through injection with a very thin needle. As I said, the medication is delivered over the next three years. No additional shots.
Now I have not seen any references to this delivery system being considered for Anti-VEGF shots, but personally I would say it holds some intriguing possibilities. Cut the number of shots from 36 in three years to 1? That would have real appeal to me!
I believe I mentioned POT. That is POT4. It is a C4 inhibitor. Zumira and Eculizumab are C5 inhibitors. Once again they are picking a variety of complement factors to target. I believe this is just more evidence we are going to need genetic testing before treatment in the near future.
I also see it as evidence we may require combo drug treatments. If my genotype in regards to complement factors is as bad as I think it is, we may just get one, rogue factor under control before I am bit in the butt by another!
We have talked extensively about lamp stuff. Remember the real pronunciation of the word is more like “Lamp! Uh,Liz,you mab?”. Of course, you don’t need the question mark. I will, however, probably say it with that inflection forever. Thinking about breaking Elizabeth’s light is the only way I seem to be able to remember lampalizumab!
Plenty of other things mentioned but this is getting long. To be continued.
written September 8th, 2o17
When Sue was at the Summer Academy, several people talked to her about a way to navigate that’s better than Google Maps. It’s called…
As we get older, some of our senses decline including that of taste. Sue has some hints to…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
Lin/Linda here: I am having difficulties with the software I use to maintain the website. I will be sending a few posts from days past that I do not think went out. Sorry for filling up your inbox!
ATM stands for Automated Teller Machine. They’re not easy to use if you can’t read the small screen which is usually subject to glare. Luckily, many of the new ones have a jack for headphones so it’s almost like…
We know that what you want to hear about is what research is going to give you in your lifetime. But every once in a while something cool comes along like taking zebrafish genes and inserting them into mice for…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
Lin/Linda here: I am having difficulties with the software I use to maintain the website. I will be sending a few posts from days past that I do not think went out. Sorry for filling up your inbox!
Sue continued her adventure by taking a bus back home after her participation in the Summer Academy at Penn State. Did she enjoy it? No, but she would do it again if she had to.
While at the Summer Academy, Sue talked to someone who gave her information about…
Centers for Independent Living
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
Sue was invited to participate in The Summer Academy at Penn State University which was sponsored by the Pennsylvania Office of Vocational Rehabilitation. This was for visually impaired kids. This was her first ‘adventure’ away by herself to do her…
After the closing ceremony, Sue decided to set off by herself to explore.
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
Sue shares some statistics such as “The World Health Organization (WHO) says there are 285 million visually impaired in the world” and adds that most of the vision problems of the world could be solved with glasses! The WHO & the Lions Club are working to solve this problem and are…
As Sue continues her journey, she’s been finding more and more evidence that a person’s genetics matters when it comes to the causes of & treatments for AMD. Turns out we all are made of…
Snips & Snails & Puppy Dog Tails
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
Is it possible to overdo antioxidants? Maybe we really should follow the advice…
Once again, genetics plays a big part in an upcoming treatment for geographic atrophy: lampalizumab. Sue is…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
Sue has always been an active reader & that has not changed even though her vision has. The difference is that she’s enjoying audiobooks now. There are lots of sources of them so we go…
Canada has many services for those with visual impairments. This is our salute to…
Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD? We recommend that you read “In the Beginning”.
