Anyone interested in sharing their experience of PCS?
 

Hi

I am a clinical psychologist working with someone who has post concussion syndrome. He is keen to learn about other peoples experience of this but is unable to access the internet and there are no local support groups available to him. I just wondered if there would be anyone out there prepared to share their experiences of PCS with my client?

This forum appears to be a really helpful and supportive place and if possible I will direct him towards it but in the meantime it might be really helpful for him to hear of other peoples experiences first hand. Really just looking for ideas from people or a willingness to respond and then we could discuss the best way to do this. A little vague at the moment but it is a shot in the dark right now - seeing him next week so will discuss it further with him then.

Thanks a lot!

Kate

Hi Kate, just going back and reading all the posts is an eye opener. It has been my salvation from my PCS distress. This forum keeps my sanity..just knowing and seeing posts of others, that do the same as myself, is so helpful.
I am in my 10th month and at age 65 see no end to it. Can see the personality changes and of course the cognitive changes. UGH! No fun and so alone in this. Family and friends do not understand. Even a best friend will say..oh I know just how you feel I forget too! NO WAY, PCS is not just a forgetful problem, it is life changing.
I blacked out, totaled the car (did not hurt anyone) did not get hurt myself, well not anything you could see. Just black and blue from the seat bealt a little. In the hospital I was listed as having brain damage by one doc and other said I was normal. LOL My daughter says she kept telling them something was wrong with me. Kept saying this NOT my Mom. I can not remember much about the day except in little spurts. The only thing that happened was basically, I was so shaken up from head going back and forth it is kinda like shaken baby syndrome, only this baby is 65! I blacked out came to and was so mixed up and confused...live with confussion daily now.
Some days I want to scream, others I want to go live in Heaven with my Dad & Mom. I wouldn't do anything to get there, just a sweet thought of being out of this, and all the pain I suffer from other problems. Would love to be able to, one time go find something, or finish a task I started, without forgetting just exactly what I was doing in the first place. Ha, no fun! Handle our finances and that is a trip. Good thing most of it is automatic...cause I don't function too well anymore.
At my age I have "old age" against me. You don't heal from PCS as well as a much younger person would. That is OK, I've had a good life...now if I can just keep reminding myself of that..when I get to crying or anxious(sorry not sure of word spell?) maybe I would feel better about it. Ya know, it could have been a lot worse. I could have killed someone or even myself when I wrecked. Also could have Althzimmers(sorry that word gone too?).
I do know that when I get tired or am having a pain flare, it is even harder to concentrate. I have lots of emotional outburts and was not like this before the wreck. Do not laugh easily anymore and life is not as much fun, nor pleasant. I am trying to change this and change my thinking, to having a half full cup, instead of a half empty one. Got to do something quick..poor husband suffers from all my issues.
Hope you can find the right pathway to help your client.

Welcome
 

Hi Kate,
If you send me your email address, I'll send you my blog URL. I have a category specifically for everything having to do with my experiences with PCS (so you don't have to read the other drivel!). You might find it helpful.

I'm currently really struggling with and writing about the psychological aspects of the PCS, and it might help you understand it a little better.

Lori
risiblegirl AT gmail.com
(posting my email that way so spambots won't get to it.)

Kate- this site might help you too:
 

I found a lot of great information on this site:
http://www.tbiguide.com/index.html

Again, good luck

Lori, thanks so much for the tbiguide website. I wish I had read this last summer/fall, it would have helped me a lot to understand what was going on with my head and all the headaches. It is still very helpful now, so again, thanks a lot for sharing the information.

Sissy
 

I know what you mean. I was amazed at the amount of information in that guide. I think every TBI/PCS person should hand over a copy to their family and friends. :)

Hugs,
Lori

Good Morning RISIBLE GIRL
 

To Lori Thanks for the link. I use many of the management stragtegies this person outlines to manage the TBI/PCS sysptoms and they work.

The problem is learning to communicate with people who have not suffered a TBI, their thinking and emotional process are different, so there is a huge informational gap between people who have a functional brain [ one that has not been traumtized or injuried ] and a brain that is not functioning correctly.

TBI/PCS are invisible disorders and it seems to me that the people with these types of disorders are the ones reaching out trying to find a solution to these problems and that is why forum like this one are so important . People with TBI/PCS understand what your going through because many of them have experienced the same type of symptoms.

Keep On Truckin Lori, communicaton is one of the keys to the healing process.

Take Care Jeffn:)

Kate Hardy You may want to share this forum with your client. You can go online at any Library and it's free or you can use a family or friends internet service to go on line. There a great deal of information here and links that maybe helpful. Jeffn

Thanks so much Risiblegirl, this info has helped me so very much. I nearly cried when I read it. Now I have something my husband can read(if he will and that is a big IF) to help him understand and maybe he will quit telling me I'm "crazy!"
My emotions are terrible right now. I just finished having a meltdown a couple hours ago and cried buckets. Of course hubby was totally blown away by my behavior...yet he did get up and start straightening the house, which is his way of helping me. I like a very clean ordered house..no clutter. So helping me straighten up is a good way to get my emotions back in control. Now he straightened the kitchen, did not choose a chore I find hard to do. I am an old fashioned homemaker and Mom, so have always kept everything running and hubby is my little boy too! LOL Our biggest challenge is my inability to carry on and my great need of help with everyday living.

I like the time out idea. Maybe it would stop the many flare-ups and my shreiking like a banshee at hubby, if I could call time out. That is IF he would even try to participate?

So thanks again for this site. :hug:

Froglady
 

Froglady, bless your heart. I've had a few of those meltdowns lately too. In fact, I had one about 6 hours before I cracked my head open. I'm glad you find that information helpful- and I hope your husband DOES read it.

It's so hard for people to understand what it is that we're experiencing, isn't it? I don't think we could ever explain it in a way that anyone could relate to except someone that is or has experienced it.

I hope you feel better.

HUgs,
Lori

Kate Hardy
 

Hi, I have been away for a week and would have posted sooner.

I think the best thing that you could do for your client is to make certain that she/he has information as soon as possible. Lack of information just about drove me crazy - well crazier than I thought I already was. Also to let your client know that what she is feeling is normal for the condition and another thing that I would have really appreciated early on was meeting with somebody else who has had the same complaint or is still coping with it. Just knowing that you are not the only one seems to give comfort.

The site that Lori referred to is the one that I found on the internet and diagnosed myself after repeately going to the ER doctor (I was new to town and didn't yet have a GP) and complaining about my headaches etc etc and he simply looked at me and said "I know about people like you, I used to work for an insurance company" That was 6 and half years ago.

I tried to keep working, with all the problems - memory was shocking tiredness terrible all the usual ..... in the end my employer spoke to a dr friend of his and she luckily had been a head injury unit doctor and referred me to Dorothy Gronwell neuro - you may well have heard of her- she has written several books one of them is very very basic and an excellent starter for a new pcs person - if you google her name you will come across her - the book covers several real incidences and age groups. Unforntunately Dorothy died of a heart attack after my 2nd visit. I think she used to work with somebody from the US even though she lived here in New Zealand.

My psychologist last year was trying to convince me that I should accept as I am and not waste energy on wanting and trying to recover. I couldn't do this as I have to have hope and my dreams - to not have this doesn't bare thinking about - and that is another story on my bad days which seem to be here at the moment.

Good luck with your client and I am really pleased that you have done this for your client. The world needs more like you!

Lynlee

Melt downs
 

Hi Lori and Gaye

Maybe it is the season for melt downs -- I have had at least 3 this year - worse than I have ever been previously. (I am wondering if I need anti depressants again.) It feels like the tears are just waiting all the time and I know that if I keep going as I am I will embarass myself in public.

Lynlee

Sissy - did you see that ages ago I wondered if you would be ok on a tandem bike - or did you think I had gone loopy??

Lynlee

Lori, I do feel better today, thanks.
I couldn't get back here until now, due to my melt down turning into a big phsycotic blow-up! Started screaming in hysterics...can't remember what words I was screaming, ran into another room and sobed and sobed! I lost it competely and packed my bags left the house at night. I normally, even before the pcs, have night blindness and certainly can't drive a carwith my pcs, so this was a dumb but desperate thing to do! . This was a big deal...went down the road a couple miles realized I could not put anyone elses life in danger, so went and visited my Son at work until late night, he is only about 3 miles away from where I live. Later called hubby and told him I would be back home.

What a night. I just wanted peace. Had cried all day long over everything, thought washing machine was broken..full of water so would not add more. I did not see the water...big time confused! Got upset over some shelves we bought and hubby was complaining about them. I asked him not to put them up right then...told him I was upset and losing it...he insisted...wrong thing to do...it was the last straw....that was what caused all the screaming and big big overload.

Today we are OK, each walking on eggs. He took me to the Mall along with my handicap scooter. We ate at a resturante there together, he left me and went off down the street to some other stores. I was alone...totally on my own with no keeper and no one rushing me or telling me what to do. :) Oh what a glorious day. I actually got out of the house and saw people and things and felt so much more normal. Bought new glasses, a pair pj's & a sweater and they were on sale! Glasses were the type frames I wanted and old lenes were scratched badly.

The greatest thing of all, was My hubby was sitting beside a man on a bench in the mall. The man had brain damage when he was in his twenties and is now in fifties. Still suffers with pcs type issues...he understood my situation. I actually got to talk in person with someone that said "I know and I understand what you are going through"! WOW, what a moment what a wonderful thing to get to talk to this man. I left the Mall thinking that there is a chance that I will make it...missing some of my abilities, but still I will make it. I am not going to lose my mind...just lost some of my brain!

Also last night my Son said hubby cares but son doesn't think hubby can understand what is wrong. Says his daddy is worried about me. Sure could have fooled me...he comes across like he is always mad at me. so I have to start finding a way for us communicate?

Lucy, I am sorry you and Lori are having melt downs too! I am very sure I need some kind of pill to chill me out. Due to my pain levels and pain flares, inability to walk very far or get about very well, I have been on antidepressants off and on for years. Guess it is time to get back on again. Sometimes I wish I could lay down like "Rip Van Winkle" and fall asleep and wake up when it is all over. Ha, at my age I don't have that much time! LOL Goodness. I just laughed...hmmmmm that felt good!

hi to everyone

Sorry it has taken me a little while to check out this site. I am so grateful to everyone for their responses. I will make a copy of what has been said and share this information with my client. I am to encourage him to access this forum via the internet at the library but even if that isn't possible I feel that it will be invaluable for him to learn there are others out there experiencing similar things.

On a personal note it is so inspiring to read about how each of your are dealing with difficulties and the support that is available via this site. Thanks so much for extending that support to me as a visitor. I hope to let you know how we get on

Once again many thanks

Kate

Hi Kate, thanks for taking such an interest and for going out of the way to help your client. I think it is great that you are trying to get him connected with other people with similar experiences. I can't even describe how much this forum has helped me and hope that we can be of help to him.

Hi Lynlee, I wrote a reply earlier, but I lost it so I will try again. Thank you so much for thinking about me and I hope you enjoyed your vacation time despite the melt-downs. I get those too sometimes - the "poor little me" moments and I try to think of other people who have worse problems and that helps some of the time. I appreciate your suggestion about the tandem bike and a friend offered to take me on a ride last fall, but tandems are much harder to control than regular bikes and the person in the back is at the mercy of the front rider. I guess I don't trust others enough to keep the balance and don't want to fall over and bump my head. I read in the tbi guide that swimming in a warm water pool can help with head and neck pain and was wondering if you have ever tried that? I thought I might try, but would like to hear from others if it really helps or makes things worse.

Hi Kate Hardy,
Your client is lucky to have found a therapist who is willing to go the extra mile and research PCS! My son and I went to a neuro psychologist in Brookline MA when he was healing for months with PCS and those appts. gave us so much information and peace of mind. Keeping the stress level low and having some peace of mind helps so much in the healing stages of PCS. this site is extremely unique and packed with alot of intelligent knowledgable PCS veterans. Good Luck with your case!
Nancy

Sissy Bike
 

Hi Sissy, Have you thought about getting a bike stand for your bike and setting it up in the garage or some safe controlled environment where you can practice riding.

I would use Kaizen in this application of re training [ baby steps will get you to the bus]

Take Care Jeffn:)

Thanks Jeff, yes I have been doing indoor cycling on and off since Nov. I started with 15 min. and slowly worked my way up to 30 min., but pushed a bit hard last week and had to back off. I use a heartrate monitor and need to keep my heartrate pretty low or I will get dizzy. I was inspired by Barry Willer, but am not sure that this is doing much. At least I am doing some exercising. Take care.