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Trish-411 says:

TWM, I 100% understand what you are saying, where you are coming from, and how you are feeling. I am a fan of Dan’s advice. In fact...

Topic: Non-complete quad - am I caregiver or a wife - I don't know at this point

on Friday, May 24, 2013 4:33 PM EST

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TWM says:

Thank you. I am trying to take charge of my life. I have too. If I don't , I feel like I will just disappear into a black hole.&...

Topic: Non-complete quad - am I caregiver or a wife - I don't know at this point

on Thursday, May 23, 2013 5:20 PM EST

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Dan Gottlieb says:

dear TWM, I am so sorry for what you are going through. Unfortunately, I am well acquainted with this nightmare. You know, in nature there are no rig...

Topic: Non-complete quad - am I caregiver or a wife - I don't know at this point

on Wednesday, May 22, 2013 10:43 AM EST

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Dan Gottlieb says:

the poet Rilke opens one of his poems with the following line: "I am too small in this world and not small enough to make every moment holy"...

Topic: the view from here

on Wednesday, May 22, 2013 10:21 AM EST

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TWM says:

I know that he is the only one in charge of his recovery (not me). No control. I realize that I cannot make him want it but I ...

Topic: Non-complete quad - am I caregiver or a wife - I don't know at this point

on Tuesday, May 21, 2013 10:56 AM EST

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Healing the Mind and Heart

Daniel Gottlieb, Ph.D., a practicing psychologist and family therapist, will be live in this section every Wednesday from 4-5 p.m. ET. Leave a question or comment anytime for him!

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10 Posts

I really feel as if I'm done with this life

By MikeyBoxide

It's coming to the point in my life where I can't find any joy in anything anymore. My psychiatrists offer absolutely no help just medications that I have bad reactions to. I'm so frustrated with my bladder it's so painful when I have muscle spasms and reflex which is all the time. I get no more then 3 hours of sleep at night. Crazy I live in Atlanta near the Shepherd Center and they pretty much have some of the worst aftercare to offer possible. It's been over 2 years since I've been able to do any physical therapy besides ride my horses which is my actual only joy in life still. I have so few friends and literally hardly any in the disabled community to relate to. I do often consider just overdosing and getting it over with. I've felt this way ever since my accident and I don't see myself being able to handle it for much longer. I just want my old life back too or anything remotely close to it. I had no choice but to force myself to be independent because I live alone, and I lack the resources to be out and about in the community. Let alone find other people who accept me as an equal when it comes to riding horses as I'm better then most able bodied riders are. I'd just like to feel a bit happiness in my life again and don't see that being possible. Anyways, there isn't much anyone can do for me I just felt like putting this out there. Georgia is a terrible place for anyone with a disability don't come here!!

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Marykathryn says:

I live in Vermont. It is brutal cold icy. Snowy. Very difficult to get around in wheelchair. My grandson. Is T 5 complete. There are NO after care rehab. Facilities in Vermont. He has no opportunity for any PT. Medicaid will not pay for anything out of state. We would love an opportunity to b e near a rehab facility like shepherd. I hear your pain and my heart aches. Riding. Can be very therapeutic and having access to a horse and being well enough to ride is a gift for a para. My grandson is only 21. No financial resources and struggles every day. We are hopeful he does not go to. That very dark place. Please find a reason. To have some degree of hope. Someone once said. It never so bad it can't e worse. Best to you.

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prc_donnal says:

MikeyBoxide said:

If you can find some way to further me from just therapeutic riding and into a competitive level of riding or something of that nature. I ride at a place called Little Creek which is actually not far from the Shepherd Center and that's who they work with now more then Chastain because the facilities are nicer. It's city owned and there are over 40 horses and the therapists are all NARHA certified or PATH certified. I am a high functioning l1-l2 incomplete who is capable of mounting myself on any sized horse and dismounting. My riding abilities are far above those of even most able bodied riders. I just don't get to push my limits it feels like they are holding me back and don't want me to get hurt again. The last thing on my mind while running or riding on a horse is getting hurt again and I have absolutely no fear of it. There won't be anything as bad as being run over by the person you loved the most's truck and remembering every moment of it. Neuropathic pain I wish that was all I had to deal with, but no my pain comes in the form of mental anguish and extreme physical pain that I am learning to get used to. I am not however used to having no goals to work towards as other sports don't really interest me the way horses do. So anything you can do for me would be of great value. Horses saved my life literally if it wasn't for Scout I wouldn't be here typing this to you I would have honestly chosen the easy way out, but our paths crossed and my life was again forever changed. I've been riding horses for over 14 years of my life and being as poor as I am doesn't make it very easy for me to live this kind of a lifestyle. It's very taxing on my family and I wish more then anything I could give something back in return. This I know was a gift to me and I'm not even a very religious person spiritual yes, it's obvious that horses are my spirit animal and have guided me through this roller coaster of life. Donna thank you I honestly do need to learn how to integrate back into society and am having a hard time doing so. Again I'm just lucky enough to have this but I want to go further. My 3 years will be coming up soon and they used to say it takes about 2 years to get used to it. I believe I won't ever get used to it and instead I have to try and find things to distract myself from that and riding horses and working with them is exactly what does that for me.

I do have some information and additional resources that may help with furthering your competitive riding.

I'm also thinking that you may want to participate in our peermentor program.

I will email you privately.

Take good care!

Donna

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Dan Gottlieb says:

hi Marykathryn,

Things can get pretty dark,literally and emotionally especially if you are isolated. I honestly don't know anyone who hasn't visited that very dark place at least once. And I also know very few people who have visited that place and stayed there. It does happen, but only for a small percentage.
And your grandson is not the only one who is at risk for going to that dark place. As a loved one, you have to live with ongoing frustration and helplessness. And most loved ones and caretaker's expect themselves to do things they just can't do which makes their lives even more difficult. So you haven't said anything about his parents, that all of you must be able and willing to engage in self care.
You haven't said when your grandsons accident was or how he was doing emotionally. Perhaps he could join us in these discussions?
Please please take care

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Daniel Gottlieb PhD
www.DrDanGottlieb.com

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12 Posts

DonnaLee says:

Hello, MaryKathryn, The pain you are feeling is so devastating especially when you are caring for someone you love so dearly. Then having to see that person living with a disability at such a young age makes it worse. It must be so difficult for you to get through each day. I am caing for my husband who felt he was worthless after his spinal cord injury 10 years ago. I think he actually hated himself many days. That made me feel hurt and as though I couldn't properly give him what he needed. I then decided to take one day at a time and try to better care for myself. It was exhausting phycially and of course emotionally. I was a accident waiting to happen and knew that I needed to keep going on for him. I reached out to the National and Ct. Spinal Cord Chapter and the Reeve Foundation and they all sent me their resourse guide books. It was incredible what I learned from them. I also reached out to a support group that connected me to so many others living in my situation. We shared our information. There might be programs and resourses in your area that you might not be aware of. I found being kind to yourself is so helpful. What you are doing is so loving and kind but also needed. We all want the best life for our children and grandchildren. My heart goes out to you and please let us know how you are doing. Also tell your grandson there will be better days ahead for him. I feel staying in touch with friends and family also helped my husband get past his issues. Life is different but with love you can get through anything together. All my best to you both. I will send some prayers your way. Also your grandson might find some friends here at this web site. Tell him that he is still a special person for me and never give up hope.

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DonnaLee says:

Hello Mikey, I was one of the people who replied to your post weeks ago. You have no idea how happy you just made me as I read this new post. You have come so far and must be one amazing guy. This is just incredible and amazing to actually feel your happiness. It is important to follow your dreams and man you have done just that. Then reading about mounting and dismounting just blows me away. Since you have no fear is so important to continue on at a higher level. I have no doubt you can do a peer mentor program and teach others. I would love to see you do something on that level. You also should try to compete and after reading this I just know you can. There would also be something you might want to give some thought to That's having someone take a video of you mounting and dismounting. Then of course we would have the joy of watching you live your dream on the Reeve site. I as well as others would just love that. Thank you Mikey for reaching out to the wonderful people here. That's what this Foundation is all about-sharing and caring. They do so much to teach us how to adapt and reinvent our lives after an injury occurs. The part you you mentioned about the financial side of this is difficult but you just never know there might be some grants out there. Especially when they see how capable you are. Then I would also like to comment on where you talked about the two year process. I have found this to be quite true in most cases. It is one of the hardest things to adjust to having to reinvent your life but you Mikey are on the right track!! Please keep posting and let us know when you get to that three year mark, All I can say is that I am extremely proud of your strength and your stong will. Dreams really do come true! DonnaLee It's almost Valentine's Day and you made my heart happy!

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Diana says:

You need to find your own happiness. Life is not a bowl of cherries and crap happens. We can either wallow in self pity or find things we CAN do that will give us joy. I am a C7 T2 paralyzed from the chest down and I have no grip in my hands. My life before my accident was very active 4 wheeling, riding horses, swimming, camping, hiking, sports, etc. and then at 28 yrs old I had my accident I had none of it, it was all gone. All my friends even left because they could not handle seeing me in a wheelchair, even my 8 year relationship down the tubes, because he was embarrassed to be seen with me. Then 4 years after my accident my best friend (my mom)passed away a week after she had surgery.........I never get a full nights sleep anymore, and I am either constipated or have diarrhea and let's not forget having to cath every 4 hours or less depending on how my bladder wants to act. What I am trying to say is; yes it can be rough and even rougher if you sit and dwell on everything that is negative. Look around you. You can ride your horses, what I would give to ride again and I am assuming you live out in the country; lucky you. Everything I loved to do was taken away from me but at least your not stuck in a city and unable to ride. Do your own therapy. I am a quad and I do my own range of motions. Listen, look inside yourself and find your inner strength because it is there, you just have not found it. I do not have many friends either and no one who is disabled. A disabled person must lean on them selves and become stronger. I do not nor will I ever take medications to deal with depression because in my opinion crap happens; if we stumble and fall we need to get right back up and keep moving on. You will not find happiness until you find some kind of happiness within you. I am not trying to be rude or disrespectful, but someone needs to be blunt with you. Also, with muscle spasms try warm baths and deep heating rubs also try heating pads on low but be careful because you can burn easy. I found that medication is not the answer to solving sadness because it only masks it. In life we must make our own happiness. You ever feel like talking just get a hold me okay. I am at britzdiana@yahoo.com.......I'm actually a nice person and I'm here for anyone who needs an ear to listen.

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Dan Gottlieb says:

Diana said:

Hi Diana,

Sure sounds like you have been through a lot, especially after your accident. You didn't say how long ago your accident was, but as I listened to you it sounds like the ramifications live with you constantly.

I admire the fact that you seem to be using your anger to push yourself to accomplish more. And by the way, anger is a reaction to injustice. And all of us have experienced some powerful injustice in our lives. So anger is inevitable. And some people use anger to put themselves in victim positions while others use their anger to make their lives better.

But here's the deal, just like anger is almost inevitable, I believe self-pity is part of the process. If memory serves me correctly (although it rarely does these days), Christopher Reeve wrote in one of his books that he dedicates a small block of time every morning for self-pity and then he gets on with his life!

One final thought; when we become socially isolated, people are less likely to reach out to us. Therefore, whether it's fair or not, we have to be the ones to reach out. This is very difficult if we don't feel good about ourselves, if we don't feel worthy of friendships or even love. And the only way out of that loop is through acts of kindness towards ourselves.

Thanks so much for joining this discussion Diana.

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Dan

Daniel Gottlieb PhD
www.DrDanGottlieb.com

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prc_donnal says:

Hi, Marykathryn,

I am an information specialist at the Paralysis Resource Center. I can email you some information and resources on therapeutic riding as well as on fitness and exercise, grants for individuals.

When was your grandson injured? I can also send you our new-injury package of infoirmation if you would like to receive that.

My phone number is (800) 539-7309 x7202; my email is dlowich@christopherreeve.org.

Sincerely,
Donna

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Diana says:

Hi Dan,

Actually, Dan I am not angry about anything and how I feel about my life is things happen in life and although we do not know why it happens God knows and there is a reason for it. What I was trying to say to Mike was that not everything in life is all happiness and we will face challenges, but not to give up and not to dwell on being paralyzed. We cannot keep feeling sorry for ourselves. I wake in the morning my animals there to love me and I focus on how grateful I am to have them then I get up cheerful. There are not many days that I wake unhappy. Those days that I do feel unhappy are the days that I miss my mother terribly. Often times people push others away without realizing it because they are caught up in their self pity and unhappiness is like a disease it can take your life over and people tend to stay away from that. Mike needs to try and what he has and is able to still do rather than focus on what it seems on what he is unable to do. He loves riding and that was not taken away from him; he can still ride and he should be thankful that he still has the ability to ride and find his inner happiness.

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Tency says:

Hi there,
Great developments in medicine are emminent in the next five years with the dawn of autologous stem cell treatments. The race is on and successful improvements are already being seen in Germany, Argentina, China, India, and even in the U.S. Results are already being posted on youtube by patients worldwide. I recently told my tetraplegic complete friend (who I have a huge crush on) that he will be out-running me soon and would be cured by his injury probably sooner than I would from my post-polio syndrome's progressive degeneration of my system.
In the U.S. there is a center in Florida already using it and the FDA approved more trials:

http://www.youtube.com/watch?v=Gu3CXw_1tpY

http://www.miamiherald.com/2012/07/30/2923674/ums-miami-project-gets-fda-approval.html
So I would not throw in the towel just yet.
Here in Spain they are using botox injections to help with bladder problems. It seems that this is already in clinical trials in the U.S. which people can look into to participate at the link below:
http://clinicaltrials.gov/ct2/show/NCT01502956?term=botox+injections+for+bladder+control&rank=1
Additionally, I recently posted this procedure which is bein done in South America and should be brought to the attention of doctors in the U.S. to see if it would be safe:
http://www.hptu.org.co/hptu/es/servicios-medicos-/91-estimulador-de-raices-sacras-anteriores-sars
(you need to click on the British flag for English)

As patients we have to be pro-active with our healthcare. This might mean moving on to another medical center if we are not getting anywhere. I used to tell people if you took your car to a service center and it let you down, would you keep going back? Well, he__ no!
The same goes for medical attention. If you are not satisfied with the results, look into something else. I have always had more luck seeing doctors who were involved in clinical trials like the one above, because those are the ones who keep up with the latest and greatest. So you may want to look into their site (http://clinicaltrials.gov), since you can search by medical diagnosis and click on the map tab to see those studies being done close by. Chances are if you can't get on a study, you will still be able to see one of the doctors listed for a second opinion. Wishing you the best and happiness, 10C

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Dan Gottlieb says:

Hi Tensey,

What an amazing piece of research you have done here! I also love your enthusiasm and hopefulness, your tenacity and generosity.
All of this information is very important for all of us to know and keep an eye on.

Personally, I am inclined to agree that there is always new and exciting research right around the corner that can and will help the quality of our lives.

Coincidentally, my web chat this month is entitled: "How Do We Live the Lives We Have?"

The reason I wanted to talk about that is because I want to offer a cautionary tale about your wonderful work. There are many people who will look at that research and refuse to live the lives they have because they believe their lives will get better. So they stay waiting for tomorrow to come.

Like I said, this research is very exciting. And I can almost feel your life energy and enthusiasm. While you are looking around the corner for what is new, you are still living life you have with great passion.

Love to hear from you about this. And if the time zones aren't ridiculous, I would love to talk with you next Wednesday at 4 PM Eastern time!

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Dan

Daniel Gottlieb PhD
www.DrDanGottlieb.com

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Tency says:

Hi Dan,
I will definitely try to be on the call. I think you were here in Barcelona once, so as you know we are several hours ahead, but will do my best to be on the call and hope the connectivity cooperates.
I think we all have dark moments when we have to "justify our existence" in our own minds, but I find that keeping creative and busy helps disperse the blues. Personally, I find that healthy living, prayer, and music also helps to keep my mind in balance. I try to get out and about at least twice a week, but am blessed by a good transportation system here. Hope this note finds everyone in good spirits. Warm Regards, 10C

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Tency says:

Hi Dan,
I wanted to join the discussion, but am fending off fever and some sort of flu. Hope to join the next telecon. Thanks for explaining the process of registering for these calls.
Have a lovely meeting,
10C

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Dan Gottlieb says:

hi tency,

Turns out the discussion was canceled last week as I had pneumonia. I hope you are feeling better, I am.

Please try again on April 3!

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Dan

Daniel Gottlieb PhD
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Tency says:

Thanks Dan,
I hope you feel better soon. I am still a bit weak from the flu I had, but will definitely try to join the telecon on the 3rd of April. Saludos, 10C

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