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• Random thoughts?
• Posted: 2008-04-13 22:10:11 By Bradley C
• I've sort of been stuggling with myself again lately and I wanted to find out how you guys dealt with some of the issues I've had. If you have them of course lol. I'm still young, 25 years old if anyone really wants to know. Being what my eye sight is, a career in anything that my heart truly desires to do is not possible. My heart is so geared toward doing public works such as a Police officer that it just rips me apart inside knowing I can't do it. I just sit and think sometimes, "They've got to find a cure, and fast." It's almost like you can see it slipping away from you and there's nothing you nor anyone else can do about it. So how do you guys deal with have such a passion for something and can't do it?

• Re: Random thoughts?
• Posted: 2008-04-13 22:59:17 By Mark L
• I have the same thoughts when I first found out BUT I've decided that I'm not letting this problem stand in my way. Sure, I'm not going to be getting my pilot license anytime soon ( I wanted to do this prior ) BUT I am going to focus on my career and my family. I'm not going to let anything stand in my way. I recently talked to a guy who had Macular Degeneration and didn't let his small eye problem stand in his way. He built a multi-million dollar company and recently sold it.
  
  I do hope they quickly find a cure for this problem ( and I believe they will ) but one item that I always think about is that it could be a lot worse !
  
  Sorry a lot of random thoughts. Don't let your career goals stop just because you have this issue.

• Re: Random thoughts?
• Posted: 2008-04-14 05:30:31 By Robert H
• I’ve just had the worst patch of depression recently, only about a fortnight ago, I went to the doctors to explain how bad I felt, and he just wanted me on anti-depressants, but I refused. Unfortunately with this condition, as it progresses and you notice it getting worse you start thinking to much and the emotions start taking over. If you can overcome your emotions or use them to your advantage then as many will tell you, you can have a fulfilling life and at least achieve some of your goals, or at least just hold out until a treatment becomes available. Keep reading these forums for advice and encouragement from people who are in same predicament.
  
  For myself, I’m boneless coward with hardly any fire left in me and can only see the negative side of life these days and would take the easy option if offered on a plate. Before I was diagnosed with this condition in my early 20s I was a very out going individual, competitive with a loads of dreams, but every year that passes my life feels more empty and pointless. Just watching normal life just rips me up inside, the mental emotional pains from trying to cope just kills me. From my point of view I have two options, suicide or hold out for a treatment to halt or reverse the effect of RP, but my will to be here is diminishing just like my sight.
  
  Reading up on trials like this http://www.ucl.ac.uk/ioo/research/researchers/clinical_trials.html is the only hope I feel keeps me going, I don’t really have a life, just an existence in hope something like this can give me chance to finish the life I was forced to abandon over a decade ago.
  
  I don’t think I will ever come to terms with this condition as it progresses, just typing this brings tears to my eyes. The only way I can deal with this currently is to keep away from others and keep to myself, and try to occupy my mind with anything so I don’t have time to think about things in general to much. I find playing World of Warcraft (computer game) and weight training currently help for me.
  

• Re: Re: Random thoughts?
• Posted: 2008-04-14 11:34:51 By carolina s
• Robert
  There is nothig wrong with taking anti-depresants. Why did you reject the Dr's recommendations to start taking them ? It seems that your quality of life could be improved by them . A lot of people have a bad "stigma" about antidepresants but I'll tell you I know people taking them that have made a dramatic improvement in their lives.
  Like you say there is a great deal of reasearch
  going on out there that may bring us a treatment soon so do not give up, however it seems that rp has control over you and should be the other way around. Anyhow if I was you I would reconsider taking the anti- depresants.
  Take care
  carolina
  

• Re: Re: Re: Random thoughts?
• Posted: 2008-04-14 15:36:42 By Darran Z
• Carolina,
  
  I know you directed this to Robert, but I've stated it in the past, the issue really isn't a chemical imbalance which is what most anti-depressants address and attempt to correct. The issue is COPING and learning new skills to remain independent. Drugs are not the answer for everyone.
  
  You likely were doing well before you were diagnosed with RP--the only difference is you have a name attached to your eye problem. Subconsciously, you were adapting, now the gloomy news of RP hits you and your cognitive processes change. Changing one's cognitive processes and learning to cope and new skill will do more good than being medicated for something that likely won't do any good. If anything, I'm willing to bet it's more of a psychological impact than anything else. Might as well take a sugar pill. :)
  
  Finding where to get these resources to learn to adapt and regain life can be hard. You know from other lists that we are both on know that people can be stubborn and refuse to learn to cope. They feel that is "giving in" but in reality, it's making you progress by learning HOW to cope.
  
  Darran

• Re: Re: Re: Re: Random thoughts?
• Posted: 2008-04-14 17:49:46 By Natalie C
• Darran,
  
  Very well said! When I first gave up driving I spent two years grieving. Even though I'd been diagnosed 25 years earlier, it hit home for the first time when I turned in my license. I knew I didn't want drugs bacause I knew my problem was psychological, not chemical. I started to help myself by starting a local FFB chapter in my town as a way to help with the research process and as therapy because I needed to feel I was doing SOMETHING. I am now done with my two years as leader and I'm also ready to move on with my life--thanks to great family support, and very loving, supportive friends who let me grieve out loud. The last year I threw myself into helping others, now I'm slowing down a bit and refocusing on a new career and a new outlook on life. I'm not fond of saying that at least RP won't kill me, but after experiencing several tragic deaths in our community lately and watching a friend survive her battle with breast cancer (she was declared cancer-free yesterday!) it has been reinforced in my mind that going blind is by far not the worst thing life can throw at you. Maybe I won't "see" my grandkids, but I'll be here for their births and I'll be able to hug them and read them stories (in Braille) and tell them about all the good things life has to offer, just as I'm doing with my kids now. I want to be an example of strength and character for my children and I DON'T want them to have pity for disabled people. Disabled people can do whatever they want in life, they just have to put a little more effort into figuring out the "how to" part sometimes. But give yourself the time to properly grieve. Losing your eyesight is a loss and to think that you can just take it all in stride or that you shouldn't throw a small pity party now and then is not logical. Do your grieving, get the anger out, and then put it all behind you and make a realistic plan for the future.
  
  P.S. To the gentleman who wanted to go into law enforcement...I saw a news item a few months back about a blind man in England (I believe) who worked for the police department listening to secret recordings the police had made of suspects. His hearing was sharp because of his blindness, so he was able to detect parts of conversation and noises that disclosed secret locations, etc. that his sighted counterparts and computers were not able to decipher. Where there's a will, there's a way.

• Re: Re: Re: Re: Random thoughts?
• Posted: 2008-04-15 19:49:47 By Carol C
• Darren, you're right that coping is a big issue with the depression that can come with facing losses.And many people can do this without medication, But, if a person is really stressed by it, and not coping well, the stress chemicals produced chronically in cases like that WILL mess up serotonin, dopamine, and noradrenaline levels, making antidepressants very helpful. But then, the stress and coping still must be dealt with. Chronic stress is the trigger for human depression, and what we think about daily is the biggest cause of chronic stress.If someone sits around all day, believing their life is over, and there is nothing to look forward to,after enough time, clinical depression will result.Antidepressants are especially needed if suicidal toughts are an issue. We inherit our tendency for depression, with some people being able to tolerate much more stress than others. And some people cope much better than others, and have better support systems in place. Carol

• Re: Re: Re: Re: Re: Random thoughts?
• Posted: 2008-04-21 01:36:00 By Darran Z
• Carol,
  
  While I agree in general with what you said there is a distinct problem. The fact that anti-depressants only treat the symptom and not address the cause. In otherwords, often anti-depresants act as a "band-aid" to hide what the "wound" is. Until you address the cause, anti-depressants are just really band-aids.
  
  Often, I beleive Americans are overmedicated with anti-depressants (it's a huge billions of dollars intake to the pharmacuedicals) but often fail to address the cause.
  
  In the case of what you are talking about, that is often classified as someone having atleast 5 of 9 symptoms. Many people with RP do not even come close to this when feeling "depressed." There would have to be something else in life that caused this. The term depression is overly used on a broad range of mood swings.
  
  I'm not saying that this doens't happen, but it would be affecting a very very few people. Someone can be feeling the blues daily but not classified as depression. It might be classified as Dysthymic Disorder, a sub-type of depression. However, one of the criteria for any depression is that it is not a result of medical issues. RP is a medical condition.
  
  There is more to the criteria of depression than just feeling down and frustrated in life. The key here is (in my opinion) learning to adjust and cope. Many people do not do this due to being in denial of having RP. Until that is resolved, then they can move forward with life. In other words, they stay in the denial part of grieving too long. This is one of the reasons I can appear to be arrogant but just being blunt.
  
  There is a quote by Helen Keller at the bottom of my e-mail that states:
  
  "So much has been given to me;
  I have no time to ponder that which as been denied."
  
  There is another quote I like by Scott Halmiton:
  
  "The only disability in life is a bad attitude."
  
  There is great truth to both when dealing with RP or Usher.
  
  Darran
  
  

• Re: Re: Re: Re: Re: Re: Random thoughts?
• Posted: 2008-04-21 09:04:07 By Reyne K
• Darran,
  I totally agree with every word that you wrote. Not only does your story apply to RP and despair, but any type of disease at all. You already know how I feel about taking pharmeceutical drugs...I am totally against them for symptoms that a good diet and exercise can achieve. I think I remember that you said you were going into psychology--correct me if I am wrong. You will be great!! Thank you for your inspiring words of wisdom :-)
  
  ~Reyne

• Re: Re: Re: Re: Re: Re: Random thoughts?
• Posted: 2008-04-21 11:16:05 By Carol C
• Darren, you are so right that attitude can be everything! That is very true in depression- chronic stress is the trigger ( you probably need an underlying genetic predisposition as well), and what you think about ( attitude) is the biggest chronic stressor for humans. But, depression is not rare. About 20% of people will have an episode of clinical depression in their lifetime.No, RP certainly doesn't by itself cause depresiion. However, learning you have an irreversible condition that will alter everything about your future is a very understandable stressor.You had your whole life to adjust to your situation, probably with lots of family support, and obviously, lots of willingness to learn everything you could to help yourself. For those who didn't have those definite advantages, cut them some slack! Anti-depressants can be abused, can be used as a crutch to avoid, like anything else, but DO change chemicals and improve mood, giving someone the ability to start changing their attitude, develop coping skills, etc. And very likely avoid killing themselves in the process, if the depression is severe enough. Just because you haven't needed them doesn't mean others don't, and doesn't mean their need is not legitimate. Carol C, RN, BSN, 30 years in psychiatric nursing

• Re: Re: Re: Re: Re: Re: Re: Random thoughts?
• Posted: 2008-04-21 11:40:08 By Darran Z
• Carol, I never stated that medication didn't work. I am arguing that it is often over prescribed and there is growing evidence that it is. Depression is a was a rare disorder not even 20 years ago. Now it's exponentially exploded. That doesn't make sense because the rate of depression is not consistant across other cultures. Therefore, many studies are beginning to question the validity of the so called "20%" of people being depressed. America as a society gets something for everything. That's more common here than in other advanced countries. The recent report last year regarding those seeking anti-depressants resulted in mixed review. Of course, people like you are going to rejoice but that doesn't prove anything but that American society likes a "quick fix." Americans take more medication than any other society, regardless of race or ethnicy. Culture has alot to do with this.
  
  You and I discussing this only shows the continued debate in this area.
  
  I'll use another example of Ritalin. That is often an over-prescribed medication for ADHD. Are parents really not being a parent and want medicine to do their job or are they going to let their kid be a kid? It wasn't too long ago the Pediatric association recently started to curtail this.
  
  The majority of anti-depressants prescribed today are by family doctors who have no background in psychiatry or psychology. That only goes to show the misdiangoses of such a disorder.
  
  Anyway, we are on polar ends at this so there is no use on continuing.
  
  Darran

• Re: Re: Re: Re: Re: Re: Re: Re: Random thoughts?
• Posted: 2008-04-21 12:38:03 By Carol C
• Darren I've never believed that disagreeing with someone means the discussion should be shut down, unless one is concerned that their "expert" status has been threatened? Carol

• Re: Re: Re: Re: Re: Re: Re: Re: Re: Random thoughts?
• Posted: 2008-04-21 12:46:15 By Darran Z
• Nothing is being shut down. This discussion will just go into cycles (as usually do) and just looking for an exit out is all. It's clear we hold different pardigms on this issue. What else do I say?
  
  Neither one of us can "convince" anyone one way or another but collect chearleaders. It's up to each indidivudal to take personal responsibilty to educate themselves about this issue.
  
  Darran

• Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Random thoughts?
• Posted: 2008-04-23 09:05:55 By Carol C
• Darren, we are all entitled to our own OPINIONS, but not to our own FACTS about depression, or anything else.
  
  Carol

• Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Random thoughts?
• Posted: 2008-04-23 09:51:54 By Darran Z
• Carol,
  
  Your "facts" are because you are coming from a medical perspective. Of course, drugs are the answer there. I, on the other hand, am coming from a psychological perspective, therefore, drugs are not always the answer. CBT (Cognitive-Behavior Therapy) works effectively in situations when a person is dealing with RP. I don't see people taking an "Adjustment to Blindncesss" class and see the LCSW administer them drugs or recommend that they go see a psychiatrist to get drugs. Part of the problem is people can only think one dementional and not "outside the box." There's nothing I can do about this but attempt to convince them there is more to live and living and more than one way to skin a cat.
  
  Darran

• Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Random thoughts?
• Posted: 2008-04-24 18:16:03 By Carol C
• Darren, you apparently missed everything I said about dealing with the stressors as well as the chemical imbalance. Yep, that's the CBT- learning new coping skills, because without lessening the stress ( what you think about), the relief from medication is likely only temporary. But, when you feel hopeless, worthless, can't sleep, no appetite, hve no energy or motivation,etc., there is NO AMOUNT OF CBT that is going to work at that point, for that person. The imbalance would probably right itself in about 1-2 years, doing nothing, but the risk of suicide during this time is too great. Psychiatry utilizes both medical intervention and psychological intervention ( so often not covered by insurance, though), because BOTH are very important. Either intervention alone would eventually "cure" 70% of persons with depression, but combine them, and it's over 90%. Yes, the newer medications are a lot easier to take outside of the hospital, so family doctors do prescribe them a lot, and don't provide therapy, but a big part of that is many people just don't have insurance to cover therapy. And there as many therapists doing as poor a job as there are family doctors giving incomplete treatment. It's a continuum- some people are at the "need more meds than therapy" end ( psychotic depressions) and many others are at the "need more therapy than meds" end ( adjustment disorders). This forum can be a wonderful start for someone struggling with a new diagnosis, talking with others experiencing the same and sharing from their knowledge, but medications can very legitimately get someone to the point where they can make use of it so much more quickly. And that is NOT using them as a crutch, nor is it lessening the value of CBT. To completely eliminate medication as legitimate treatment for depression is ignoring facts, just as completely eliminating CBT as treatment would be ignoring facts.
  
  Carol

• Re: Re: Re: Re: Re: Re: Re: Random thoughts?
• Posted: 2008-04-25 08:15:10 By Patti H
• Darren;
  Sometimes, it takes a lot of courage to admitt your depressed. I feel medication can really help take the edge off as your trying to get back on track. After the birth of our twins and a second child with ushers, I was very depressed. I am proud I went to my doctor and got the help I needed. If I didn't, I might not be here today!

• Re: Re: Random thoughts?
• Posted: 2008-04-20 09:37:06 By Kim V
• Robert,
  
  I am a bit late in my reply to you, I just wasn't quite sure what I wanted to say to you. Your post touched me more than I will ever be able to express in written words. I have been struggling with this change to my life and am never sure that I am going to be ok. I guess that what I hold on to is the faith I have in the fact that God does not give us more than we can bear. I believe in everything that happens to us is a lesson and a way to something better. We can choose to be victims or victors, I want to be a victor. I know that everything I have been doing is no more, but it starts me on a new adventure to figure out what I can do. We are not disabled, we are differently abled.
  
  Robert there has to be some sort of support for you where you live, through job coaching, etc. I know that I live in a very rural area so I will be limited in my resources but there are still many people and agencies that can help me here. I do hope that you will look into them. Being by yourself only makes this disease own you. Most people want to help you, and I find are more understanding than I ever thought they would be. I found that I could help people who helped me, they take me to the store, I make a phone call for them, or watch their children for them, etc. It makes me feel good and I am helping them just as they help me.
  
  Robert, you are a person with a vision problem, not a person without value. It is so important to find what you are good at and share it with others. RP is not a fair disease it just is what it is, coping is not easy but I truly hope that you find your way through this, and I am praying for you...sincerely kim

• Re: Re: Random thoughts?
• Posted: 2008-05-05 09:49:44 By Mini S
• Hi,
  
  I understand how it feels. My fiance has RP since his 16th year and he went through a particularly depressing phase 6 years back. Thoughts of suicide and lost hope and add to it he had taken some medicine for the RP which gave a violent reaction in his lungs and he was coughing non-stop for a whole year. I myself had gone through depression, though not because of RP, and so was able to understand his plight. It needs a lot of courage to face this illness. The best way is not to let the RP take control of you, instead take control of the RP and your life and learn to cope. Be a fighter. Life is far too precious to let RP spoil it. Also be encouraged by the fact that very soon a cure may be found for RP also. Also remember that with every passing day, you are one day closer to the cure for RP. Please keep your hopes alive.
  
  Regards,
  Mini

• Re: Random thoughts?
• Posted: 2008-04-15 22:16:43 By Beth M
• Hi Bradley,
  I'm just curious what state you are located in?
  My husband is a 23 year police officer in Oklahoma. At the department he works for, there is a program for volunteer officers called sentinals. There is also a program called citizens on patrol. I volunteer helping out in records sometimes. You can also do ride along with officers during their shift sometimes. Just check with your local police department. You may be surprised at how much you could do in your community and help out in the process.
  I don't know much about you and at what stage your RP is at. I have 20/30 central vision and only 2 degrees of peripheral field left. I am 39 years old and was diagnosed at age 15 right before my folks were giving me a camaro to drive.LOL NEVER got to drive it. Had me pulled from drivers ed and the whole nine yards. My dreams were to become a DR. At the time I was diagnosed, I was told by VR counselors that it would never happen. So I gave up on my dreams. Dropped out of school. Got married and had a baby. Looking back as I got older I realized that only I could determine what I could or couldn't do with my life. Desire and ambition don't go away just because you are dealt a lousy hand in life. I made it my goal in life to see my son become a man. He is now grown and has a baby of his own, so now my goal is to see my grandson grow up. For me, I had to set my goals at my own pace. When my son was older, I entered beauty school against the advice of VR and paid for it myself. I graduated and got my state license. I then went to school and learned business and computer technology. I love that one. I then went back to school and learned medical teminology and medical transcription. I did all of this with less than 3 degrees of peripheral field. I now work for a company working from home for the IRS. Not my dream job, but it keeps my mind busy and keeps me from becoming depressed and lonely. I find that staying busy helps me more than anything else. I think we all go through our depression, sometimes severe. Medication is a personal choice. I have been on medication before, but more for other things in life than just the RP. For me it saved my life, honestly. Not all people with RP are depressed just because of RP. Depression runs in my family, so for me it was a wise choice. I was on it only for a while and got off of it as soon as I felt I could cope again. Never been back on it.
  Sorry for the life story here. If you would like to talk to anyone, email me. My email is bethm350@sbcglobal.net
  

• Re: Re: Random thoughts?
• Posted: 2008-04-16 07:49:44 By Bradley C
• Beth,
  Thanks for the encouragement. I live in Alabama and I am currently 25 years old. I also have 20/30 central vision and I have about 8 degrees of visual field left. I live in a small with less than 17,000 people. I'm pretty sure our police department doesn't have any of those programs. I know they have a annual class where your "Cop for the day" type thing. I'm currently on disability and it is really driving me crazy. I've seriously been thinking about finishing school and trying to find a job that I can succeed at. Anyone know of any schools that is actually looked at as the same as a actual degree? Online college's, I've always heard, never get the same credit as a regular college. The closest college to me is a good drive away, so the only way I could go would be online. I just feel like there's more to life than what I'm doing right now.

• Re: Re: Re: Random thoughts?
• Posted: 2008-04-16 11:20:55 By Beth M
• you are very welcome. If you are interested in maybe working from home using your computer I have a list of places you might could check out. You can always work part time and keep the SS. Believe it or not, there are a lot of legitimate companies who hire people to work from home. I've researched quite a few.
  If you are interested just email me and I'll send you a list of places you can check out.
  Beth:)

• Re: Re: Re: Re: Random thoughts?
• Posted: 2008-04-16 13:41:53 By Vicki T
• Hi Beth,
  I'm currently still waiting to hear back from SS to see if I qualify for disability. My BCVA is 20/50 with a VF of about 5 degrees. I'm 49 and not working.(stoped working in Jan.) I live in Iowa, in a very small town where job opportunities are very slim if anything at all. I'm trying my hardest to keep myself from going stir crazy! I would be very interested in possibly getting that list of places that hire people to work from home from you. My email address is ttvt@netins.net Thankyou, have a great day.
  Vicki T

• Re: Re: Re: Re: Re: Random thoughts?
• Posted: 2008-04-16 17:43:34 By Vicki T
• Beth,
  Thanks for the email and info. I really appreciate it! :)
  Vicki T

• Re: Re: Re: Re: Re: Re: Random thoughts?
• Posted: 2008-04-17 15:57:58 By Marisa P
• Bradley,
  
  We often have to make some alterations to our dream career choice. It may be because of RP, physical fitness, other health issues, etc. So, those of us with RP/Usher are not the only ones faced with that dilemma. I know that our life can be more stressful, but we are not dealing with a terminal illness by any means.
  
  You may want to look at the college closest to you to see if they have degree programs online. They are offering more and more courses online these days. If not, Beth's suggestion is a great one. Working from home would give you some cash and you'll feel like you have a purpose.
  
  There is no reason why you have to isolate yourself from others. In fact it would help you to be around others so that you can "forget" about yourself for awhile.
  
  I have learned to be thankful for what I have. Even having Usher (RP and hearing loss) I feel fortunate of having been able to do what I have done. Don't waste the time you have. You have good visual acuity and hearing and there is so much you can do. We don't know what the future holds for us, but neither does anyone else, with or without RP.
  
  Always strive to do the best with what you have and take care of your eyes and your health.
  Marisa

• Re: Re: Re: Re: Re: Re: Re: Random thoughts?
• Posted: 2008-04-24 21:21:19 By Tracey W
• Hey Bradley.
  
  I live in Birmingham. You probably already know this but the State will pay for your tuition and books to a state school. You would be responsible for room and board. I don't know if it would be an option for you or not. In Birmingham, there is a bus system for disabled people that you could use to get you around. You make a reservation and they pick you up and take you where you need to go. I have not used them. Just an idea.
  
  Tracey