what works today
We’ve come a long way baby – I could barely think of Christmas this time last year. I’m going to share some information with you but first I want to tell you about another angel that touched our lives. I’m not so good at making stories short stories but I’ll try…
One of the goals that Mike and I set recently was to work toward setting up an eBay store. A win/win for us – setting up the excel spreadsheets, gathering information, setting prices – all Mike’s job, Mike’s win…this is great executive function rehab. My win is to help supplement the household income since I’ve basically had to give up my career in Real Estate to commit to Michael’s recovery. So, our second sale was my Treo. As many of you know, I just switched carriers, only had the phone one year – you got it…sell it on eBay! We list it, it sells, Bobby does a hard reset, we package it and off it goes. Success! Not so fast.
The buyer gets the phone and the phone starts resetting itself every 8 minutes. It no longer works like it should, we have no problems taking it back. What’s right is right. We’re waiting to get the phone back and I get an eBay communication from the buyer. In the exchange of emails he sees the link to weluvmike.com and….(how am I doing with making the story short?).
His name is Kody. Kody has a wife and two teenage children and together his family watched Mike’s One Love video. The final email communication from Kody relayed this message ” i just sat my 2 teenage kids and wife down to watch your video dedication of your son on weluvmike.com… keep the money for his cause and know that you have a new family of four praying for your family and your sons recovery. may the lord JESUS be with you and your son..” Thank you Kody.
The Lord works in mysterious ways – we thank him for all our blessings.
Michael, Emily, Nathan and Sylvette are preparing to leave for a week long trip to Florida with David and the rest of his family. With David and Mary living in Richmond now, they don’t get a chance to visit with the kids very often. I try to keep them up to date with the important stuff but the “how to’s” of daily living with Michael is really one of those things you share on a need to know basis. I sent an email to them today to go over the idiosyncrasies of “a day in the life” and after reading it again, I thought some of it might be helpful to share with those following Michael’s progress and going through similar circumstances. I know it helps me to read or hear how other TBI survivors progress as time goes by. We all look for hope in others.
An excerpt: ” … what I’ve learned and… helpful hints. Everyone has their moments…
Fatigue – fatigue is a huge issue with brain injury. Now add back, hip, neck and foot pain – Mike not only needs rest – he will need rest on his back (off his feet and off his seat).
No rest = irritable, restless and rude.
Behavioral/Emotional Difficulties:
Restlessness – Mike still has difficulty (at times) paying attention and is easily distracted so he is usually pretty restless. He feels like he needs to be doing something all the time. If he’s not physically doing something – he’ll look for the DS or iPhone.
Agitation – the same thing applies when he has trouble reasoning. When he cannot reason effectively to understand or accomplish whatever the goal is he tends to become more restless and that quickly turns to agitation.
Emotional irritability – executive (reasoning) skills will pose challenges keeping irritable behavior in control. Doing things that he should not do (like staying on the iPhone all the time) continuing to focus on one thing even though it may be to his detriment – i.e. looking at the phone while walking, not being able to put it down even though everyone else is looking at menus and so on. If you interrupt, he may not be able to reason effectively or figure out right away what to do in that situation. He may get irritated that you want him to stop – it may take him a few minutes to understand and be able to solve the problem. The gates that would have kept this behavior in control have been knocked askew and things may come out (rude remarks) that used to be kept in.
Diminished insight – self-awareness of his performance and abilities. Although there has been improvement, Mike still does not have a good understanding how the injuries impact his daily life but at this point in his recovery, that’s probably ok.
Impulsivity socially inappropriate behavior – again, we’ve seen improvement but both diminished reasoning and lack of inhibition contribute to Mike saying hurtful things and he can be insensitive and blunt at times. He sometimes says things that come to mind without considering that it might be rude or hurtful. Sometimes it’s subtle, other times severe. He’s not able to reason that if he says it, then something undesirable is going to happen. The appropriate inhibition is not there.
Poor initiative – Mike’s frontal lobe injury has affected his ability to plan and to organize. This results in Mike usually not initiating activity. He may sit quietly and contentedly (but you can bet he’ll have the iPhone out). If you ask him to do something, he will do it but probably not go any further than that AND he will do at his own pace. The if/then reasoning skills and the attention problems prevent him from focusing on something long enough to be able to carry through with a plan.
Blaming others for negative reactions – i.e. angry outburst/rude comments. Let’s say Mike gets frustrated or upset -because he still struggles with reasoning he may not know the logical explanation for what is happening. He may automatically assume that someone else is doing or did something to cause his reaction. There are times that he’s just not able to remember something that he did, and may blame someone else.
Anxiety: I’ve found that when Mike has trouble being able to comprehend a situation (not being able to remember is usually the culprit) or anticipate what is going to happen causes him to get anxious. That anxiety will play out as anger.
There are situations that seem to trigger his anxiety:
* Being in crowds (his personal space has a large parameter and noise is still a factor)
* Being around small children (the noise and constant movement)
* Being teased (I should have listed this as #1 – it will set the mood for hours and sometimes days) he does not like it. He usually DOES NOT understand that it is meant as humor – he takes it very personal – he holds a grudge and will remember what you said that bothered him for hours/ days/weeks/ even months! It just depends on who said it, and how he interpreted what he thinks you really meant.
HELPFUL HINTS!
* Remember that we can change our behavior or the physical environment.
Changing our own behavior will usually result in a change in Mike’s attitude.
* If possible change the environment.
Turn down the music; if everyone is together and you see Mike withdrawing – stop and listen – is there too much going on? TV on and everyone is talking at the same time? Is it too loud? Could he be tired – needs a break?
If you’re out just talk him through it…ask him what’s going on – he can get through anything with help.
* Behavior has a purpose – sometimes Mike can’t tell us what he wants or needs unless you ask him or figure it out – you may not know where to start but we can figure it out better than he can.
* Put yourself in his shoes – you’ll usually find what is causing or caused the problem.
* Behavior is triggered – it usually doesn’t occur out of the blue. It might be something a person did or said that triggered a behavior or it could be a change in the environment.
* Try a different approach, or change the environment.
* What works today, may not tomorrow.
* Don’t tease or make fun of him – he doesn’t think his brain injury or the changes as a result of it are funny.
We take nothing for granted. Many, many thanks to all of you that have contributed to Michael’s recovery whether it is through prayer, through friendship and support or contribution to his medical fund. I have said many times, it takes a village. Thank you.
LIVESTRONG Michael.
xxoo