Family Life with RP

I have had the fortunate experience to grow up not only knowing my grandparents, but also knowing my great-grandparents. While my great-grandparents have all passed away, none of my grandparents have. While I should feel fortunate for growing up knowing all of my grandparents, there have been times when I have found myself finding my grandfather's impairment to be an impairment on my life. Let me explain what exactly I mean by that statement. RP has had an impact far beyond a loss of sight for my grandpa. He has bad knees and legs. In 1997, when I was only six years old, my grandpa had knee replacement surgery. While for sighted individuals, recovery is easy, for my grandpa, it proved to be difficult. He never fully recovered from the surgery and as a result, has had increasingly weak legs since that time. He has also had to have repeat surgeries and as he has gotten older, he has also broken both of his legs at separate times. As a result of all of these things, it has put a strain on our family. We have had to plan holiday gatherings around his ability to get into or out of a house, ultimately leading to them all occurring at my grandparents' house.

The one time where this intruded the most was at my 8th grade graduation. Right after the ceremony, rather than spending time with my fellow graduates and then with my family later on, I had to help my grandpa navigate through the crowd of people and then felt left out. While I was only fourteen at the time, it still was not a good feeling. Also, at every holiday gathering when my grandparents would come over, I would have to help my grandpa get into and out of the house. Now that he is limited to basically being at his house, I miss seeing him spend holidays and birthdays at my house. I know that he also doesn't like being limited in his own home. My grandpa has always been an individual that puts his family first. He told me all the time when I was growing up that no matter what, he would be at my high school graduation, and he was there. We have also repaid the favor. After breaking his leg prior to Thanksgiving last year, he spent time in a nursing home. We spent time on Thanksgiving there with him.

Just because you lose your sight, doesn't mean you lose your life. While there have been adjustments made in my grandpa's life, he has still been able to life it to the fullest extent all things considered. While he has not been able to see my brother or myself, he has been a major influence on my life. My grandpa has always told me to believe in myself, has wanted to watch me succeed throughout my life, and above all, has loved me from the bottom of his hear. While at times, life growing up with a blind grandfather can be hard, in the end, it has been a great, eye-opening experience that I wouldn't change for the world.

Early Adjustments with RP

My Grandpa, Bill Cordes, has been living with RP his entire life. He was officially diagnosed in 1961 and had to retire from work in 1974. He had not worked at his job long enough to pull out a full pension, and his disability check had to be split between himself and his two daughters, my mom and my aunt. They were able to use this money after they turned 18 to get an education and buy a used car to get around. Throughout my life I have spoken to my grandfather a lot about how he has coped with the disease. Before he knew he had the disease and began losing his vision, he loved to drive, watch baseball games (especially the St. Louis Cardinals,) and walk or bike around Lacon, IL where he lives. The biggest adjustment was when he could no longer work. My grandma had to become the breadwinner at that point in time, as they could not afford to live off of his meager retirement and raise a family of four. My grandma began working second and third shift at Caterpillar, so my grandpa would make lunch for my mom and aunt before school as well as clean and maintain the house. Until he had knee replacements in 1997, he would vacuum and dust the entire house once a week.

My grandpa also LOVED to drive. He would go out on drives, make impromptu trips to St. Louis and other locations just for the scenery. Upon losing the ability to drive, he was crushed. I cannot imagine losing a part of my life that I absolutely love. He had to begin listening to the radio broadcast of baseball games as well as the news. The one good thing that came out of my grandpa's loss of vision was the increased capacity of his mind. He has always been an intelligent individual, but as he lost his sight, he was able to take in more information as well as retain it.

The technologies that currently exist to aid the blind are still very expensive. Amazon.com sells screen reading software for around $270. My grandparents were not wealthy people. They could not afford the even more expensive screen readers back in the 1970's and 1980's when my grandfather really started to lose his vision. He was able to get some assistance though. My grandfather loved to read books, and now without having a job, he had plenty of free time. As a result, he was able to get books on tape and listen to them. While today, the technology exists in items such as the kindle, he did not have access to read aloud books in the past in any other form.

All in all, my grandpa has had a huge adjustment by living with RP. This adjustment has been both slow as well as rapid. As he grows older, it is becoming harder and harder to live with rather than easier. I know that by having him in my life, it has made me appreciate the gift of sight every day of my life.

Tools to Help the Vision Impaired

We typically do not think about what life would be like without sight. We rely on the sense of sight to live our every day lives. We have to read books, news articles, magazines, instructions, and directions. We then have to type assignments, papers, letters, and other materials. We find our way around the world with our eyes primarily.  Once we lose that sight, we are at a loss as to how to get around. While driving is something that becomes impossible, there are still other deficiencies that can be made up.

As time has gone on, there have been a variety of technologies that have been developed for the blind. The Adaptive Technology Center for New Jersey Colleges (http://adaptivetech.tcnj.edu/resheet/blind.htm) explains some of the technologies that can aid the blind. For those people that suffer from partial blindness, computers can be modified with a screen magnifier. This allows an individual to be able to see a computer screen. Other computer technologies include JAWS and Windows-EYES which are screen readers. This allows anything that is on a screen to be read aloud. Other computer based technologies allow papers to be scanned and then read aloud. Visual technologies include visual cameras that can magnify tangible reading material. This occurs through close circuit video technology. Readers for these also exist.

Newer technologies developed by members of the University of California at Santa Cruz (http://sciencenotes.ucsc.edu/2011/pages/blind/blind.html). These include a new application that would aid people to get around unfamiliar areas by using their smartphone. While these technologies will aid the blind, they also provide advances for the sighted. Voice dial and text technology were originally developed for blind individuals, but now they can be used by sighted individuals to make phones easier to use. By helping those with impairments, we are also helping society as a whole

What is Retinitis Pigmentosa?

Retinitis Pigmentosa (RP) is a genetic disorder that affects the Retina. The Iowa City Hospital RP center (http://www.medicinenet.com/retinitis_pigmentosa/article.htm) explains that the retina are damaged either partially or fully. Typically, the disorder runs in families. It begins with symptoms such as night blindness and the development of tunnel vision. Other symptoms include seeing spots constantly.  Complete blindness can occur, but is highly unlikely. Individuals that suffer from RP can live relatively lives, with assistance that is. When an individual is diagnosed at a young age, they can learn Braille and buy other devices to try to aid in their adjustment to living with the disease. There are some tests that can be performed to see if you have RP. These include a simple look at the retina while your eyes are dilated as well as genetic tests. By using a genetic test, it can be foretold if an individual has RP at a young age. Additionally, http://www.retinitis-pigmentosa.com.au/treatmentforretinitispigmentosa/ explains that RP may now be curable. By introducing Beta Carotene, a vitamin that is similar to Vitamin A, an individual can essentially be cured of RP. The disease also surfaces more in men than in women because it appears on the X chromosome. Women are typically carriers for the disease.


My grandfather, William "Bill" Cordes and his brother Walter "Wally" Cordes both have RP.The fact that two brothers have it is extremely uncommon for the disease. My grandpa was diagnosed with the disease while in his 40's. Prior to this diagnosis, he could always see spots and night blindness had set in. He thought that is was something that everyone experienced. By the time I was born, he only could see shadows. In the time of my life, his vision has been reduced to almost nothing. The initial adjustment was easy for my grandpa. When I was little, he would do a lot of household chores while my grandma would be at work. It has been difficult for him to not know what his two grandchildren look like. As my grandpa has gotten older, his legs have been slowly giving out. After countless surgeries, the recovery has been difficult. Overall my grandpa could be living an easier life if he didn't have RP.