learning to walk again

in august of 2006 i was treated with cyberknife for a nonsymtomatic brainstem tumor. it was predicted to go well because the tumor was considered small enough and there was no cyst. unfortunately things have not gone well the first 5 months out were good but after that i developed what is known as late effect radiation edema because the radiation damaged the normal tissue surrounding the tumor. i was hospitalized off and on for 2 years, have a tracheostomy, a feeding tube, partial paralysis of my hands, and an inability to walk, my surgeons now tell me that my recovery will be between 30-70 percent and it willtake another 2 years,

of course i am very disappointed. things go so slowly. i am finally learning to walk again with an assistant and a walker. i am so slow and cumbersome that i sometimes lose hope i will ever walk again. i am sorry to sound ungrateful because there are many of us who cannot walk at all,

because i have been loosing hope, which is bad, i was wondering if anybody has been through this and knows how to keep their spirits up, any ideas or experiences to share?

By TinaDiane
Posted March 2, 2009 at 12:56 pm
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I am so sorry for all of your pain, and the loss of life as you once knew it. I am always changing my expectations of how I think my life will turn out, due to my VHL problems and also the economy and other things that are beyond our control. Prayer, friends, this web site and family have helped me when times are at the darkest....
Hang in there, we are all here for you..
xoxo
Tina

By raekel
Posted March 2, 2009 at 4:56 pm
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tina, thanks for your encouragement. gee, i never expected VHL to hit me like this. i was lucky after my first surgery because i came back at 90 percent. but this time i was not so lucky. all my best, raekel

By TinaDiane
Posted March 2, 2009 at 7:20 pm
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Problems with VHL can just blossom some times. When things are quiet, I just pray they will stay that way. Then, when I have my scans, I start to worry and worry about what might be there. I hate the waiting part. Then comes the part where you need to find the right doctors to help. The traveling and the more waiting part sometimes is emotionally hard.
You are dealing with a very difficult situation. Recovery after surgery is never easy and you have had many set backs. Sounds like you are being very brave and taking on one problem at a time!! I have only had 2 surgeries for my VHL and recovery was a long process. I hope you keep your chin up and keep moving forward in your recovery!!! Let us know how you are doing.
xoxo
Tina

By pupa
Posted March 4, 2009 at 11:05 am
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It seems that just when everything is ok Another problem arises. I am 20 yrs old and have had thank god successfulspinesurgeries, but my eyesight is what is making me fall apart, I tell my mother that if I lose my vision then that is the most horrific pain. Pl
ease help me

By beccaloo
Posted March 5, 2009 at 8:38 am
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Please don't give up hope! To me it sounds like you did lose something and IMO you need to mourn the loss. However, life goes on and that's a good thing! I'm sure you've heard by now that every day you wake up is a good day and that's true but man, sometimes those days are hard! Hang in there. It sounds like you have people around you who love you. And this online community is ALWAYS here! :o) Just take it day by day and if you can't then go hour by hour but please don't quit! I haven't had as many hard-knocks as you, but I've had to battle some of those physical demons. I never thought I'd "recover" as much as I have. It's taken, oh, about 6 or 7 years and while I can't match my "old self", I'm too busy trying to squeeze every last drop of strength out of "this self" to worry about it. I cried many tears over the loss of my physical abilities and a career and job I loved. I still do from time to time but as time's gone on it's gotten to be fewer tears and fewer times. I understand how frustrating it is when you mind is still chugging along pretty good but your body won't listen. You'll get there. It may take some time, but you WILL get there. Try not to be so hard on yourself and good luck!

Rebecca.

By raekel
Posted March 5, 2009 at 9:24 am
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thank you rebecca. i do have grief work to do over the loss of my physical abilities, independence, career and ability to make money. while i am making progress, i get discouraged because progress is slow. my walking is stiff,robotic and i hope it will eventually become more normal. i am lso having trouble with my hands. some days are good, yet i find myself crying off and on. thanks for reminding me to take it one day at a time, and even one hour at a time. i do not know what i would do without my friendsand family and team inspire. yester day i walked 344 feet, and this is improvement. thanks for reminding me this takes years. best wishes, raeanne

By TinaDiane
Posted March 5, 2009 at 9:43 am
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I wanted to say something to Pupa, too.
Pupa, I hear your pain about worrying about your vision. I know that must be very scary. I can't imagine.
There are lots of folks in this support group that are going through exactly what you are going through.
Do any of you have some encouragement for how Pupa can face his fear of losing his sight?
I think that Rebecca's statement earlier in this post is an excellent one to read over and over and over. She is a warrior. I also sometimes have to take it 1 hour at a time, and have been known to take it 1 minute at a time. Thinking of all of our VHL warriors today!!!!!!!!!!!!!
xoxo
Tina

By joyceg98
Posted March 5, 2009 at 6:57 pm
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Losing your sight is a very heavy loss. Obviously you need first to explore every option, to make sure that you have done everything you can to conserve what vision you still have.

Just like walking, if you lose vision for any time at all -- short-term or long-term -- it doesn't help to deny what is going on. It is best to find out what services are available to you in your state, to help you cope with the reality of reduced vision, beginning now.

Every state has services for the Blind and Physically Handicapped. You do not have to be completely or permanently blind to qualify for these services -- just having trouble holding a book will qualify you for some of these services.

Some people say they don't want to "admit that they are blind." You don't have to put that label on yourself, you simply need to say that you are having trouble reading normal print, or that you have some vision loss that is making it difficult for you to get around. The training and devices they can offer will make a world of difference for you.

This is an area where a little coaching will go a long way. There are tricks to managing print with low vision, there are text-to-speech readers today that will allow you to use a computer and the internet with low vision or even no vision, with one hand or even with no hands.

The first step is to ask. Unless you phone them and inquire, they will not reach out to you.

You might want to listen to listen to or read the interview with Dr. Gary Wood from a couple of years ago. He is my age (nearing retirement), and has been blind from VHL since he was 17 -- he earned a Psy.D. and has his own company providing Employee Assistance services to major corporations. He's a terrific guy. If you want to talk with him on the phone, I can put you in touch with him.

You've given me a great idea -- I think this would be a very good topic for a Powerful Patient show with him. I'll ask him if he would do it.

Coping with VHL (he talks about vision loss)
http://www.vhl.org/newsletter/vhl2004/04aacope.php

The Emotional Roller-Coaster, with Dr. Gary Wood, a clinical psychologist who has VHL
http://www.vhl.org/support/chat1999/emotrc.php

Dealing with Denial, with Dr. Gary Wood, a clinical psychologist who has VHL
http://www.vhl.org/support/chat2000/denial.php

Managing our Fear
http://powerfulpatient.org/program_guides/12_wk5_managing_fear.pdf

Best wishes,
Joyce

By pupa
Posted March 9, 2009 at 1:43 am
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Dear Joyce
Thanks for always having something to say, but I have to get the strength to carry me through this denial period. Imagine you're walking on the shore line of the ocean so calm and serine, so easy to dip your little toes to the feel of the cool water, for me I feel like I have to climb boulders and boulders of tough terrian to tackle to that peaceful ocean, afteralll I am 20 how optimistic can I be . An ocean of love to you all.

By TinaDiane
Posted March 9, 2009 at 11:01 am
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Pupa,
I really don't want to preach but please please please listen to me. I am 50 years old. My Mom died when she was 36 years old. So I never dreamed I would live past 35. After 35 came, and I did not die, I decided maybe I would live until 40 or so. With each year that passes, and I am still here, now realize that there is life past 50!! Imagine that....
I would NEVER go back to my 20s... they were an emotional roller coaster. Especially with undiagnosed pheos on my adrenal glands!! I had some VERY interesting times and some VERY awful ones (but that is another story for the book I am going to write and make BILLIONS of dollars). I think that at 50, I feel (emotionally) the best I have ever felt. So,
please reach out to the wonderful "rocks" that our sweet Joyce has given you and let it all soak in, so you can go to the ocean any time you want.
Love to you,
Tina

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