Cerebral Palsy and depression

Cerebral Palsy and depression

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PolishGuy

UK

#1 Sep 18, 2007
I am 24 year old and I was born with Cerebral palsy. When I was growing up I cannot say that I accepted myself due to my disability. When I was age of seventeen I have tried to commit suicide. The reasons were few: I couldnít handle other people jokes about me at school etc.... I have had a very good relationship with my girlfriend but because her parentís didnít accept me we split up. I am currently studying in London and everything seems to be all right but is not. I am religious myself have wonderful friends and family but the loneliness is killing me inside. Everyone is saying: Everythingís goanna be all right. You will find your love one day......When???? When I am going to be 50? It is very hard to live in this emptiness. I don't want to talk to my parents about this, because they will never understand. I have tried .......and nothing. Sometimes I wish I could be as a normal healthy guy, because even if I am good looking people always look first at my disability and personality is far behind.
I am scared of these feelings from the past regarding suicide thoughts, smoking cannabis to make me feel more happy but I feel like they keep coming back to me

My dream is to have wonderful wife with kids to whom I will give all my love but it is very hard to fight with these thoughts.

Guys how you deal with problems regarding to be disabled person????

..........
kief_guy

Wautoma, WI

#2 Oct 8, 2007
Everyone on this world has things about them that they don't like. Not everyone is dealt the same hand of cards in life, and it's not our fault.

First of all, stop comparing yourself to others. If people don't like you for who you are, why care about them? I am a caring person do not get me wrong, but if people treat you wrong don't talk to them.

Second, about the cannabis. I am a user of cannabis, but I think you may need to evaluate your own use. Are you using it responsibly? Look up responsible drug use on the internet, and if you are not following those rules you may want to reconsider.

Third, don't ever think you are alone. My brother has cerebral palsy and thats okay. It is not his fault, but he has it. He does not have good speech or thinking processes, but that is okay too. It may seem like I am playing this down, but everyone has problems. I may not have CP, but I have my own problems. Don't let other people tell you or convince you what you are worth.

And they are right. One day you will find someone for you. Just make sure you have hobbies and a will to continue doing them. You are 24 you have plenty of time and many new experiences just around the corner.

I have met many new people just by being a cannabis user. Whether it be online cultivation forums (GREAT source for meeting cool people), or smoking with people. Meet people online! Post on craigslist or singles sites and start meeting some people. Go in with the attitude that you have nothing to lose and you won't lose anything; for there is really nothing to lose at all.

I've never been on this website before and probably never will be again. I'm not even sure how I got here really, but I hope what I have said can help you. You are never alone man theres always people there for you no matter what your situation. I have learned this myself from being depressed and wanting to die. You can over come it... just remember you are worth somethin bro... never let that go.
aburger

Chicago, IL

#3 Oct 9, 2007
Hi:

I too struggle you both CP and depression. I am 23 years old and 3 years ago I attempted suicide. My faith in Jesus has really helped me see that there's a bigger picture and while I don't always know what that is, I trust my cp and all the pain it causes has a purpose. I have friends thru my local church and though I realize, not being disabled themselves, they tried their best to understand my situation. I find myself feeling lonely and thinking no one understand. However, when I finally open up to people, I discover they understand a lot more than I give them credit for. I know those negative thoughts are hard to ignore, but they're are not true. Just try reaching out to people despite what your head is telling you. People will surprise you!
Cannabis Helps

Canada

#4 Nov 13, 2007
i have had this all my nineteen years of life, i was born hemopligia one half was effected and the other some what. I have muscle spasms quite freqwently and time's where my hands and arms clinch up so i smoke Pot to relieve the pain in my hands and too relaxe them. it works when used right and properly.
My posture isn't what it should be all the timei i have a hard time keeping my back straight because my muscle's tighten up back thier.
Cannabis should be Legal but it should be used right and never abused!
if anyone would like too E mail me
my e mail is
[email protected]
Philby

Zhuhai, China

#5 Nov 16, 2007
I have to agree 100% with Kief_guy whilst he doesnít have CP I do and I understand all your feelings of isolation, rejection and the fear of failing in the eyes of others. But who is the judge of what we are and who we ultimately become, we are.

Please donít make the mistake of assuming that the so called normal people of this world do not suffer from the fears many of you are describing here because they do. Just look at the rates of suicide, depression, substance abuse and domestic violence that we see and hear about everyday. Most of these people do not suffer with any form of CP.

You are right people do stare at Cp suffers like our selves and getting laid can be difficult, marriage and family a dream. But they can and do happen if you let it. We are our own worst enemies, stop beating your selves up because there are plenty of other people out there who will do that for you.

I am a smoker and have been for most of my life, now I smoke for the pain of dragging these tired old legs about but in the beginning I smoked because I thought it helped me fit in. Maybe it did and maybe it didnít?? Substance abuse is both a virtue and an evil if you think of addiction; junkies have far greater disabilities than any of us writing here. Just wander in to any rehabilitation centre and see.

I am not trying to moralize here. I am just saying choose carefully the devil you dance with, the hurdles of life just keep appearing until the day we die and you do not need to add to lifeís frustrations.

Whilst I share your frustration and have the scares to prove it I know that I cant change the perceptions others have of me. I simply deal with it as best I can on any given day.

I have those things we wish for, a wife and a son and life is good, but be careful what you wish for you see my next hurdle is the image of how my son will view his dad who has Cp and how he will relate to watching fathers of others leaping up the 42 steps of life whilst his dad sits at the bottom encouraging him to take those steps alone simple because Dad cant do it anymore. If I see my self as poor and weak he will see both his father and him self as poor and weak and I just wonít allow that to happen.

Simply be proud of who you are even though the mountain seems bigger for you than others. It is not
maria in florida

Brandon, FL

#6 Jan 18, 2008
I have a son with cerebral palsy who is almost 16. He is a Christian, but what he said to me tonight broke my heart!!!! this is what he said to me:
"I wish God would bless me with friends. I have no friends at all that want to hang out with me or that even talk to me in school. I know that some people dont understand my disability and I cant be mad at them for it. But I wish they would take the time to get to know me. No one tries to talk to me and I feel so lonely sometimes. I wish you could spy on me at lunch. I eat lunch and then I walk around the cafeteria looking stupid by myself trying to find someone to talk to me, but no one pays attention to me. they dont understand me, so they just ignore me. On the weekends I hear all these people making plans and no one invites me and I have no one who will hang out with me at the mall or the movies like other teenagers do. I pray and ask God every night to bless me with friends and with people that will take the time to hang out with me. No one at all talks to me in school. All they say is "hey whats up". Maybe one day I will find someone that will hang out with me at the mall or something on friday nights. I cant even call anyone because they dont understand me on the phone."
I cant stop crying!!!! Can someone that has cerebral palsy email him & encourage him and share your experiences with him? He is smart & good looking ! He thinks he will never have a girlfriend. His email is [email protected] . you may email me as well. my name is Maria My email address is: [email protected] Thanks so so much!
MAT

Laguna Beach, CA

#7 Feb 6, 2008
Wow, I have to say, reading that post, it sounded like I might have written it. I am 23, I also suffer from cerebral palsy, and I have also attempted suicide in the past, largely as a result of the fact that I felt that people would never accept me. I wouldn't inherently care, except that it is increasingly becoming a reality, to me, that people's narrowmindedness will most likely keep me from advancing in my profession at the pace that I otherwise might.
I know that many people use their religious faith to get through times like this, but I am an atheist. I don't even really regard that as a choice, personally; I would rather believe in some form of God, truthfully, but I just can't.
That said, I have had an overall good life, so far, and I am not ashamed of who I am. I am only ashamed of the fact that people in this world are ignorant and cruel enough that people like us are always going to have problems with them.
I have taken down your son's email address, Maria. I will be sending him a message sometime today, for encouragement. 16 is a pretty awful age to have CP, from my experience, but it does get better. In my case, it got worse again shortly after it got better, but I'll leave that part out and hope that he doesn't experience it as well.
Mary Ish

Detroit, MI

#8 May 9, 2008
I am 21 and was born with cp , spastic diplegia. At 13 I attempted suicide for the first time (many time after) soon after I began cutting (they evolved to needing near 200 stiched at a time and then lighting my arm on fire to char). At 16 I was sent to a mental ward and continued to be passed from one hospital to the next for years. A few monthes after my 18th birthday I was restrained and given nearly 20 Shock treatments (ECT.) I never fit in anywhere, my twin brother was born,in most repects, fine he isnt the brightest person in the world but played basketball, baseball and football and still does. I on the other hand could never run jump or ride a bike, I would try to keep up with my brothers and sister but eventual was referred to as the "cripple". My entire family was athelic and was the basis of their interest. It was the same at school where there were less than an 100 people in entire high school. I was picked on, pushed down had knifes held to my throat and was threated to die before 5th grade. I was a very angry teenager and was expelled from school and then found another and ended up graduating and thats basicly my only achievment in life soon after my 20th bithday I began having small (tia) strokes and even though already on disablity and to quit my part time job due to my health was unsafe to my performance. I still continue to see a psychologist and for the most part have been doing well.rencently i saw a surgeon who said that I am to messed up to fix and there are things that could be done but not for me , but if i were an athlete if I was rich they wouldnt bat an eye. It seems as though life is there to mock me I try to do well and yet something is allways there to push me back down . I also you cannibis to help the pain and depression since meds caused damage to my brain, and caused stroke I can not take them and since most muscle relaxers have a side effect or could cause stroke i must stay clear of them. I would love nothing more than to just go to sleep and never wake up. Although not inspiring I hope someone reads this and realizes how people should be treated and not as if they were some animal ready to be tested, pumped full of drug , electrocuted or ridiculed.
Erica Dawn

United States

#9 May 30, 2008
I just turned 27 and i am really struggling with my CP. I can't run anymore because my muscles get really tight and I can't control it.I can't really go where I want in my town anymore. I feel like I've lost some of my independence. Because of this I am severly depressed.I've even thought of taking my life. I'm just trying to reach out to others like me. Maybe they would understand. I will bookmark this site. Maybe someone will understand my frustration and depression.
I just hope someone will reply. I have few friends. Even if it was just on here I would be happy.
nick

UK

#10 Jun 11, 2008
Erica, I totally feel your pain. I'm 27 myself, and in the past 6 months I've developed severe tendonitis in my knees which has only complicated my knee flexion, contractures, spasticity in my lower back, pelvis, and hips. I can't really exercise/stretch on my own very effectively because of these contractures and the spasticity; I was banking on rhizotomy for a while, but now I'm thinking orthopedic surgery might be best to bring me into alignment; I can't really do orthotic leg braces very well either (AFOs) because of my adduction, which is why I bend so much as I do. I've always found it hard to keep up or walk without risking toppling over, even thoguh I've insisted being ambulatory all this time. Now, however, I can't even stand up to begin with without being in pain, which never used to be the case even a while back.

A further part of my problem is that I refuse to really get my life in order and start doing what I want on a consistent, committed basis because I fucking hate the prospect of having to do it in a body that is in pain and/or will not support me. Worse is that I realize what I'm doing as I'm doing it -- and it makes me angry at myself that I won't give myself the chance to do more, that I do more halfassed and then stop, but that the 'truth' is that if I were to really go ahead and try to build myself up the way I know I can, my body won't follow suit, and will dsetroy my aspirations cuz of its nature as this freakish, decaying frame holding all the energy of this young man prisoner, stifling his curiosity with jerky movements and the inability to support my own weight, needing care and attention from a team I don't know how to find and that keeps telling me (from who I can find) that this stuff needs to be done 'piecemeal'. Fuck piecemeal- it feels like an emergency to me, it's worse than it's ever been, and I don't wanna totally miss out on my young life because my body's insisting on giving out from under me.

Just a taste of what others like us go through... doesn't even have to be totally coherent for people to get the general idea.
CPDub

Ireland

#11 Jun 18, 2008
Ok I am 30 have mild CP from Dublin Ireland. I find that I am getting heavy legs more often. Either after exercise or periods of resting (which is why i am on the net turns out if i elevate my legs it will alleviate it).
OK with regard to the above post I myself felt like that sometimes (I would be lying if I said I didnít). However in recent years I have come to realise that CP in itself (if used correctly) can be an ice breaker. Have a bit of self depreciating humour and it goes a long way. I feel that Americans can be overly dramatic donít take life so serious smile be happy no one likes a whiner! True some other people see a person with a disability first and foremost but there is a sense of curiosity there if approached. I call it the E.T. syndrome! I have recently come to the conclusion that nightclubs donít suit me anymore (my balance is now further affected by high insoles not good on the dance floor). I have cut down on the dancing! Yes itís difficult to make friends when disabled (especially when younger) but people love seen people who TRY not people who give up! The amount of friendly respect I get at the gym is evidence of this! All people are helpful and there is an certain underlying admiration there.
Think of it could be worse I could be in a wheelchair I should be appreciative that I am able to walk. You play lifes cards as they are dealt or play the ball where it lies simple.
As for Americans taking life seriously: there is one exception; an American who everyone with CP should look up comedian Josh Blue on the Net or you tube or whatever he has cerebral palsy and laughs about it.
Cheer up and less of the poor me its a very easy trap to fall into! I have ginger hair too AND cp does that mean is should be more depressed? haha
Personally I think of myself as a disabled sex symbol sure I am even better then superman (christopher reeves) or stephen hawkins!
nick

United States

#12 Jun 22, 2008
yeah but you can support your weight without flailing or toppling. you could, if you wanted, do yoga standing, take a duffel bag with you traveling, take shopping bags up stairs etc. ambulatory doesn't always mean free- it's not always "be thankful you can get from A to B." if instability gets in the way of basic function and even the exercise required to achieve that basic function, it can be even more limiting than being in a chair. and it's hard to take your mind off that long enough to regain a positive life attitude.
CPDub

Ireland

#13 Jun 27, 2008
People here are starting to look like its a glass half empty not half full forum! Me personally I prefer to drink a good half of my drink so I dont spill it! There are ways around every thing if you wait long enough for bad things to happen and do nothing they are more likely to happen then if you TRY and will have more chance of good things happening. Example If you dont buy a lotto ticket you cant win.
nick

Mount Vernon, NY

#14 Jul 6, 2008
Self-acceptance is much easier if you've done all you can to deal with the limitations that physically get in your way, cannot do any more, and then can settle in, per se, to accepting yourself as you are. Without exhausting all avenues, you're always left thinking about what "could be," not about what is.
There is an in-between state of partially accepting yourself currently while always holding the "golden ring" of potential normalcy close to your heart. I've been in that state for most of my life-- but it is a state of flux, and it's hard on the psyche. It makes a person "dependent until..." or "not really building relationships until..." or "not pursuing x activity until..." and the "until" is always "the next surgery, the next procedure, the next THING that will make me 'normal'."
No person with CP will ever be physically normal; none will ever be cured. But certain procedures and medications exist now which can get a person as close to that 'golden ring' as possible, as long as the person is willing to take a few risks. And there are risks, and some of them don't outweigh the benefits for everybody, and there are those for whom they're not appropriate; those people are going to have to decide for themselves the treatments that best suit them.
But for me, the following work, or have a clear chance of working. People with spastic CP should consider using them, especially if they feel 'stuck' or like nothing else can be done and they're doomed to a life of perpetual deterioration. Unless you're also hypotonic and/or in a state of decay from another impairment or a disease, your joints, limbs etc. are NOT doomed to a state of constant deterioration. The options available are not new, but many have been refined since the time we all were kids.
nick

Mount Vernon, NY

#15 Jul 6, 2008
*Selective Dorsal Rhizotomy. While most neurosurgeons will rant and rave that this nerve surgery -- which identifies and then destroys the specific nerve rootlets which cause the spasticity (because they, due to their damage, don't receive gamma-amino-butyric acid the way the undamaged nerves do) while leaving the properly-functioning nerves intact, thus relieving all spasticity permanently -- is only for children, St. Louis Children's Hospital in the USA has performed many SDR procedures on spastic CP adults. If you're a young adult with only mild orthopedic deformities from your spasticity, but you have really high muscle tone, and you can walk, you might still be a candidate for the rhizotomy surgery, despite not being between the ages of 2 and 6 (which, let's face it, a lot of people who deal with the everyday pain we're talking about, aren't!).
*Orthopedic surgery. A lot of us have had it, maybe to correct deformities coming from the spasticity, but maybe we hadn't talked or thought about SDR before, which should always be done *before* the more invasive orthopedic surgeries to correct alignment, since it will allow a situation where the tone doesn't come back and pull the realigned muscles and tendons back into misalignment. Orthopedic surgery treats only the effects, not the cause, of spasticity.
*Baclofen. This is a drug that is the same as the gamma-amino-butyric acid that the nerves to the spastic muscles lack, except it has a little extra chemical marker on the end of it to allow it to be absorbed by those same nerves and have the same effect as GABA. Baclofen's available in pill form, but 80 milligrams a day or more makes you sleepy, and sometimes less than that can't really do much for the spasticity. So, if you decide to go the Baclofen route long-term, and you need a high dose, make sure you do it through an intrathecal pump, a little pump implanted below the skin of the stomach with a tube leading from it to the base of the spinal column, allowing direct infusion of a much lower dose of Baclofen to achieve maximum effect.
*Botox injections. These go directly into the specific spastic muscle group(s) that is/are giving you the most trouble. Effects are temporary- a few months at most.
nick

Mount Vernon, NY

#16 Jul 6, 2008
These are the major chemical treatments- obviously physical therapy and stretching exercises are the best way to manage spasticity hands-on day-to-day. But for those who are at a point where they *can't* really exercise or do the kind of stuff that would help them manage themselves over time, they should consider one or several of the solutions I listed. In particular, Erica Dawn sounds like she might benefit from SDR, since she implied she used to be able to run, but now can't do it anymore. This must mean that her deformities are mild and that the main thing getting in her way and causing her orthopedic breakdown is her extreme tightness. It's the kind of case that perhaps the clinic in St. Louis might be interested in, and if Erica is a good candidate, SDR could save her from further breakdown and turn it around. The surgeon's name is Dr. T.S. Park; he's very well-renowned for his advances in this surgery and for the number of people he's successfully performed it on.
I personally am going to be getting a rhizotomy from a different surgeon, since Dr. Park declined my case (I have too many deformities), and will work with my orthopedic surgeon after that to correct the deformities I suffered from 28 years of spasticity, and hopefully, all those procedures will help me walk and function better for the long term, even considering all the intense rehab and continual exercise it will require for years to come. Once I'm at a functional level after rhizotomy and ortho, and have had a lot of PT after that to ensure I'm up to good strength, I will switch from PT to yoga and alternative movement therapies to continue my development.
nick

Mount Vernon, NY

#17 Jul 6, 2008
Not everyone needs these things. Others desperately need them; they may have been compelled to use wheelchairs and power chairs solely because the orthopedic breakdown became too much and they gave up hope of recuperation, rather than because their spasticity plus other problems did it. They may believe even though they are ambulatory that nothing can be done, or may have been told by an expert who knew nothing of the above or was too scared to tell them or who overlooked it during an appointment about solutions. I've had many years of orthotics, icing, and physical therapy; I've tried to use machines at the gym and mostly can't do it because of my limb deformities and contractures; I'm on Baclofen, which helps the tightness but not the orthopedic deformities or the tendonitis that has now increased my knee flexion and tightens the hamstrings even more. The longer I stay like this, the worse the pain gets, and the worse my function is. I flail around like mad and have started to need to use a cane every day, not just some days, to stay balanced, which I never used to have to do. It feels like an emergency, and I know others on this board have felt the same. But the solution is never to get so depressed that you never do anything. Live as much as you can, celebrate life, and look to what solutions actually exist for you. Search. Leave no stone unturned. Unless you have extra circumstances that make the above impossible, there are answers out there for you. More people need to know about those answers, in fact, and to have them clearly explained, because as it turns out, the medical community isn't going to do that for you. We have to take matters into our own hands and do what's necessary to help each other, until the point where the answers that do exist become general knowledge and are given to all that seek them.
Much as other people want us to believe we're inspirations or heroic for getting around and doing our thing, we all know we're not; we're just regular folks, trying our best to adapt to a world that is made for typical, healthy able-bodied people whose main mode of mobility is smooth, controlled walking and who can take advantage of any kind of exercise and go anywhere in the world they want to. Yes, as disability rights finally gains all kinds of momentum it never had before, inclusive practices are increasing, at least in most 'developed' nations. But self-improvement is also important, if not for external circumstances, at least for personal morale, and for an ability to maintain a positive outlook over time, which, again, is tough if you can't rely on your body to do what you want and/or need it to do.
nick

Mount Vernon, NY

#18 Jul 6, 2008
Self-acceptance is much easier if you've done all you can to deal with the limitations that physically get in your way, cannot do any more, and then can settle in, per se, to accepting yourself as you are. Without exhausting all avenues, you're always left thinking about what "could be," not about what is.

There is an in-between state of partially accepting yourself currently while always holding the "golden ring" of potential normalcy close to your heart. I've been in that state for most of my life-- but it is a state of flux, and it's hard on the psyche. It makes a person "dependent until..." or "not really building relationships until..." or "not pursuing x activity until..." and the "until" is always "the next surgery, the next procedure, the next THING that will make me 'normal'."

No person with CP will ever be physically normal; none will ever be cured. But certain procedures and medications exist now which can get a person as close to that 'golden ring' as possible, as long as the person is willing to take a few risks. And there are risks, and some of them don't outweigh the benefits for everybody, and there are those for whom they're not appropriate; those people are going to have to decide for themselves the treatments that best suit them.

But for me, the following work, or have a clear chance of working. People with spastic CP should consider using them, especially if they feel 'stuck' or like nothing else can be done and they're doomed to a life of perpetual deterioration. Unless you're also hypotonic and/or in a state of decay from another impairment or a disease, your joints, limbs etc. are NOT doomed to a state of constant deterioration. The options available are not new, but many have been refined since the time we all were kids.
nick

Mount Vernon, NY

#19 Jul 6, 2008
sorry, posted the first section twice in that final post. my mistake.
Erica Dawn

Roy, WA

#20 Jul 15, 2008
I'm doing ok. I certainly have my ups and downs. Somedays I want to give up, and other days I need to give myself a good hard slap back to reality.
Maybe I am too hard on myself? I have been that way since I was a little kid. I just wanted to be 'like everyone else.' Is SDR like getting your heelcords lengthened or is it different? At 3 I had those lengthened and something done to my adductors, don't remember what.
Thanks for the info. Take Care Everyone.

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