Comments on: Don’t guess what I need – Words of a brain injury survivor

By: michelle.munt@yahoo.co.uk

michelle.munt@yahoo.co.uk — Thu, 29 Nov 2018 22:16:21 +0000

In reply to Claire. Claire I completely understand what you mean about being heartbroken. When I was caring for my Dad as Alzheimer's begane to swallow him up, I felt exactly the same. In fact I'm not ashamed to say I now try not to think of that period of time because I don't want to remember him like that. I want to remember him at his best. Your hurting for her because of how ashamed she is feeling about her limitations, and because you miss her.

By: Claire

Claire — Thu, 29 Nov 2018 21:38:26 +0000

Hi there, thanks for your blog, I’m finding it really helpful in trying to understand my sister. She looks fine, and sounds fine, but because of her acute embarrassment at needing a lot of physical help, she doesn’t communicate her needs, fears, or struggles. So she is sometimes described as aggressive, when that is in fact a symptom of fear and humiliation. I thought I knew what broken-hearted meant until this happened.

By: michelle.munt@yahoo.co.uk

michelle.munt@yahoo.co.uk — Mon, 21 Aug 2017 00:04:30 +0000

In reply to Jo. I guess at least you have been able to put your experience to good use with your daughter. It's difficult for anyone to watch their loved one go through it, particularly as it can be so difficult to understand. But you must have great empathy for her experiences as many are probably similar to your own. Every cloud has a silver lining.

By: Jo

Jo — Sun, 20 Aug 2017 21:09:12 +0000

18 years after my RTA I can only reflect on the early years and wish that people didn’t have the “you’re only 25 pull your socks up! You don’t know the meaning of tired attitude” learning more about me and educating those around me has been the best thing. I’m now doing that with my children – one of whom I has a brain injury too from an accident when she was 6 years old. We now learn together.

By: michelle.munt@yahoo.co.uk

michelle.munt@yahoo.co.uk — Tue, 17 Jan 2017 17:24:06 +0000

In reply to Rose. By all means support her, but she needs to relearn again. It will be small steps but that will help build her confidence too.

By: Rose

Rose — Tue, 17 Jan 2017 16:49:42 +0000

My daughter has a brain injury and as I read this I am thinking that she too has said many of this. As a mom my biggest downfall is wanting to do things for her. I had to step back and let her do something for herself.

By: Jeffrey Williams

Jeffrey Williams — Sat, 12 Nov 2016 02:38:20 +0000

I have found that people in stores or on the telephone are very understanding. I used to talk very quickly but now I can’t do that and I am always searching for words. But, I can still talk and one of the best things that I have found is to have coffee, one on one, with friends. One a day seems to work best. And I started with 21 persons for three weeks so I didn’t tire them out. And they had to listen to me only once every third week.

It is always better if I have had a walk of at least twenty minutes before meeting. I have done a lot of study of what does work and the difference between 15 minutes and 20 minutes is remarkable and it doesn’t matter how slowly (or quickly) you may walk. And I look forward to going to a coffee shop to this meetings. But just as other people who commented as avoiding a noisy place, this is so true. When the number of people in the room gets too big, you don’t have any selective and then these conversations are just noise.

I have done this for over three years and I recommended it.

By: michelle.munt@yahoo.co.uk

michelle.munt@yahoo.co.uk — Tue, 18 Oct 2016 06:57:36 +0000

In reply to A.K. Schleusner. Your absolutely right, and it's good that you have such an understanding network of friends. It's amazing how those everyday jobs we normally just get on with, suddenly feel like being asked to scale Mount Everest.

By: A.K. Schleusner

A.K. Schleusner — Tue, 18 Oct 2016 06:51:53 +0000

I wish people would listen more & try to understand, but it’s impossible unless you’ve been through PCS and/or know someone that has. If they see it (I.e. You are in tears because your head is killing you & you can’t get the drugs out of the blister pack) they get it, but if they catch you on a 1/2 decent day they don’t. I’ve been fortunate to have a lot of friends check in on me & help a lot. Just bringing over dinner one night helps or showing up & insisting on going to the grocery for me or the most helpful which was a friend helping me with laundry & changing the sheets. Everything was so exhausting for the longest time. It’s been really tough to have no social life for 8 months. I went from being out 3-4 or 5 X a week to zero. I’m just starting to have people over to visit, but I can’t go out – lights, noise & movement are still bothering me & triggering symptoms. Most people just don’t know what to do & when asked I have a hard time asking for help or knowing what help I need. Everything is overwhelming when you can’t think straight and/or talking is a challenge. I just wanted to be left alone because I felt so vulnerable & emotional for the longest time. Then people would just talk too loud or fast & I couldn’t keep up so it looked like I was not interested. Or they would ask so many questions I’d just get confused & frustrated trying to answer.

By: michelle.munt@yahoo.co.uk

michelle.munt@yahoo.co.uk — Wed, 12 Oct 2016 04:58:25 +0000

In reply to Fred Mulacek. Love the meter idea. Maybe we could find someone to make it.