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traumatic brain injury from MI

Patsmom
0 Recommendations

My son was hit by lightning in 2003, sustained a heart attack, and today lives with a tramatic brain injury. He is 22. Does anyone else have a story about surviving an MI, but lives with TBI?
Pats mom

Explore topics in this discussion:

Surgery Dysphagia Anoxic brain injury Sudden cardiac arrest Falls Physical therapy Heart attack Memory Dystonia Speech therapy Neurogenic bladder Cerebral palsy

24 replies

NWWriter

Hi Pat's Mom,
I'm the survivor of an ABI/anoxic brain injury but have received good information about support and advocacy from my state affiliate of the Brain Injury Association of America, www.biausa.org At that link you can check out local and state support systems in your area. Don't be afraid to write them if you have questions. I hope this helps and good luck. You're a good Mom!
Mary

Patsmom

Hi Mary,
Yes, I'm in contact with our states tbi association, here in IL. We live in small community, mid state, and I am trying to start a tbi support group in our county. My son's short term memory and cognition were damaged. He's physically fine- but needs supervision and lots of cueing. Do you have any problems since the MI?
Lori

Ivy

Hi Pat's Mom,
My son, Jim (age 33), had a cardiac arrest due to an accidental prescription drug interaction 4 years ago and suffered an anoxic brain injury as a result. He was in a coma for a couple of weeks and when he came out of it he had to relearn everything all over again. He now has overcome most of his physical disability but will most likely never work again due to memory, cognitive and executive function problems. I would be more than happy to help answer any questions or concerns that you have.
Jim's Mom

Patsmom

Hello Ivy,
Jim's situation sounds very similar to Patrick's. I was wondering if Jim has ever tried a volunteer job, and if it gave him a sence of accomplishment/ inititive?

NWWriter

Hi Lori,

I did some great rehab work at the local University's Brain Injury clinic for my short term memory issues. I worked with a speech therapist and learned to use a small, electronic timer (Radio Shack has one) that I set when I begin a task or if I have an appointment to remember. When it goes off I'm reminded that I have to stop what I'm doing and work on whatever I need to remember.

Note: I had to stop using so many multiple pieces of paper (Post-It Notes!!!) because I couldn't remember to see/look at the notes.

I tried using small, "convenient" pocket calendars but they were too small to be "complete", and I kept losing track of them, too...

Instead, for my "complete" calendar, I use one big calendar (a large, desktop calendar) as the main calendar. I used to put magnetic tape on the back and stick it to my fridge door, but now my side-by-side fridge door is too small and I have the calendar hanging on the kitchen wall with a colorful ribbon.

I put a "done" box in front of every task on the calendar and I don't let myself take the item off the calendar until the box has been checked as "done". I'm pretty good now at remembering to transfer info from that calendar to the one in my purse. But oftentimes when I'm out and make an appointment or commitment, I'll call and leave a reminder message for myself on my home phone which I'll hear when I return.

As for how can this help Pat specifically, see if you can identify what IS working for Pat and build on that. That big desktop calendar of mine was inspired by the smaller 8 1/2 x 11" one I was using when I began rehab. "Successes point to the paths that are still functioning."

When there's a crisis, the long term memory neurons of the brain, "Who am I? Where did I grow up? Who are my family members?" survive longer than the short term memory neurons; "What day is today? What did I have for breakfast? Who's the President? (NO COMMENT)".

See if Pat's long term neurons can "adopt" or grab on to the short term memory items and he can start cueing himself more effectively. Example: If Pat remembers to brush his teeth every day, see if he can remember to brush his teeth AND then check his calendar or... make his bed or ?

"Routinization" has to be practiced with someone else until it sinks in, but oftentimes it does work and the brain can get as compulsive about remembering as it is stubborn in forgetting.

And I haven't had any more problems with my heart since that initial Sudden Cardiac Arrest in '87. yay!

Good luck!
Mary

"In the face of uncertainty, there's absolutely nothing wrong with hope. "

TV Guide Astrologer ;)

Patsmom

Hello Mary,
Lots of great ideas! Thanks.
That seems to be the toughest part- trying to figure out the stuff Pat routinely holds on to. It's not much, and not much interests him.

I have done everything (it seems) to cue him to do four tasks during his morning routine. Start/Finish buckets, felcro tasks cards onto mirror, to writting with permanent black marker on the shower walls- I cant seem to establish a pattern with him.

Things are getting better, and his old habits are slowly appearing. For example, I have seen him hop infront of a mirror to check his hair before we go somewhere. Pat came home 5 years ago with no emotion, no initiation- I mean ZERO. So, when I see a little inititive- it makes my day.

He has a calendar posted on the wall at the end of his bed ( were he likes to spend a lot of his time). He was initiating to see what was happening. I tried to start small. Trying to get him to remember to work through several tasks on a daily schedule was too difficult.

As the years have gone by, he has continued to ride horses on Wed's and See his Chevy on Fridays. If you ask him about these days, he can tell you what will happen.

I like the idea of calling your phone at home- if your out, to remind yourself to check off tasks. Pat has a memory book, and recorders. He knows why he has them, and how to use them, but he has never ititatiated to use them - unless his small STEP PAD recorder is hanging from his neck- but then his speech is not clear- or to look at pictures in his memory book- if it is on the kitchen table and in sight.

I'm not giving up. But I must say, I dont want to push him into something he just isnt any more. I don't want to frustrate him- because it just gets us both upset. I just want him to be happy and a little more confident without all my cueing.

He relys on me- and I'm his mom- so it's my job.
Lori

Ivy

Hi there,

Boy does your son sound like mine. Jimmy came home without any of the emotions, initiative, etc. also. It has taken 4 years but I can see some improvements. As far as volunteer work goes, unfortunately Jim has had 2 neuro-psych evaluations which are not very optimistic. Jim needs a lot of supervision when he is doing any kind of chore. For instance yesterday he moved a big pile of mulch in our yard but was not supervised while doing so. He lit a cigarette and threw the butt in some of the newly spread wood chips. It smouldered until my husband found it when he returned from work. It could have been disastrous if we had not gone out back to check on the status. Jim needs 24 hour supervision because of his memory loss and motivation. His short-term memory is virtually nil and he has a daytime caregiver that stays with him while I'm at work. He also gets distracted very easily. We have learned though that he will check a certain place in our kitchen every morning and if there are chores to do, I will write him a note. He will usually complete the tasks without very much prompting and they are usually easy tasks (i.e. put your clean clothes away, empty the dishwasher, etc.). We would very much like to see him try a volunteer job to see how he works under someone other than family. The other problem is that Jimmy does not consider himself disabled and to put him in a situation with mentally challenged people may not be the best place for him. It's unfortunate but we are between a rock and a hard place too.

Your last paragraph "I'm not giving up. But I must say, I dont want to push him into something he just isnt any more. I don't want to frustrate him- because it just gets us both upset. I just want him to be happy and a little more confident without all my cueing." sounds just like something I would say, and I have to admit Jimmy relies on me too and it's my job to get him to reach his full potential, whatever that might be. It just very hard to find people who are sympathetic enough to help find that potential.

Ivy

ClarksMom

Hi everyone! I have just found this site today and I've read all of your posts with great interest.

My son, Clark, had a sudden cardiac arrest when he as 9 months old. He had a tumor in the left ventrical of his heart. No one knew it was there. He was without oxygen(except for CPR performed by me and the paramedics) for over a half hour. That was in 1988. He is now 20 and it has been a very long road for him and our family. He is still in high school with plans to graduate with his class this year and return for 2 more years to "age out" at 22.

Clark suffered extensive brain damage and has undergone 22 surgeries. The first surgery was open heart to remove the tumor. It was a great success; but, too much damage had been done neurologically. He's had years of physical therapy, speech therapy, ECI, he gets weekly therapy thru our MHMR here. He is visually impaired, drives a power wheelchair, and acts like a 5 year old most of the time. He lives with his Dad and I and has pretty much been raised as an only child......tho he has 2 older brothers and 1 older sister(all in their 30's). We also have 5 grandchildren who are so good with their Uncle Clark.

We are working with Clark(and have been for years) to get him more self reliant. With his physical limitations tho, it is difficult for him to do most things. He is working on learning to fold his own wash cloths and socks. Putting them away is next on the list. He works from a big desk calendar on the wall in his bedroom. When his trainer comes twice a week to work with him, they use the calendar.

I know there is more I would like to say. I am just so excited to find others who will understand our daily lives and how heartbreaking it can be and yet also can be one of the most rewarding situations there is. We all want the very best for all of our children.

I would love to get to know each of you. I hope you will come back and post again, since this post is a month or more old.

Ivy

Hi,
Yes, I can certainly understand your situation. It sounds like you've had your hands full for quite some time.

It's wonderful that Clark has been able to attend school with his class. Does he have many close friends? I think the hardest part of this journey for me is the fact that none of my son's friends have remained in his life after his brain injury and he doesn't understand why they don't contact him any longer. He does have a hard time communicating and I think they don't know how to deal with that.

Where do you live? Does your state provide any type of help for the disabled who live at home? I live in MA and we have an agency called Stavros that provides personal care attendants daily for those who require it. Since I am still working, Jim's PCA stays with him throughout the day and it has helped tremendously. I was apprehensive at first since she is much younger than Jim but when they are together it is more like a friendship than a care-giver.

Please feel free to email me directly at ivy.oneill@power.alstom.com since I don't always check this website every day. I look forward to hearing more about Clark.

Patsmom

Hi Ivy and Clark's mom,

I find it odd that our son's have all experienced different sources of brain injury and at different ages, but are so alike. I'd like to keep hearing about your son's progress, and stragities too.

Pat has had neuropsycological testing in Chicago 3 times with nearly the same results. In Illinois, your IQ must be below a 70 or there must be other major physical impairments to get benifits from the sheltered work programs. So, the state has decided to test Pat on their own, and I should be getting the results next week. Trouble is- Pat doesn't "fit" in a sheltered program. He knows how he was, and he requires more cueing than most of those folks get.

For now I try to do little volunteer jobs with him. He works 30 minutes/wk at our YMCA. He does well where it is quiet- like cleaning the gym floor. He also delivers mail at a nursing home. Both are volunteer jobs- and that discourages him. But he doesn't complain while we are there- so I just keep going hoping he gains some satisfaction- or until something else comes along.

Do your son's shave themself. I am still working on Pat taking care of his morning routine tasks on his own. He knows how, but can't attend long enough to finish. Any suggestions?

Last month I decided to start a tbi/stroke support group in our town of 15,000. I can't drive like I use to- I'm getting worn out- and need to do more in our community. 5 families came for our first meeting, three called two days later.

Next, I want to open a day habilitation program. You can look up International Clubhouses for TBI on the net to get an idea of what they consist of. Since there is not a lot in the community for him, and he definately needs 24 hour supervision, I think a place like the club house might help.
Best wishes to both of you and your families.
Lori

Patsmom

Ivy,
I wanted to tell you that I did post a large desk-type calander to the inside of Pat bedroom door. I use a little sticky arrow to mark the day. He changes it before he goes to bed. So far he has used it- but only one thing is posted/day. Thanks for the idea.

ClarksMom

Hi Ivy and Lori! I would have been back sooner; but, I could not find where I had posted. :/ Hopefully, I will get here sooner next time. Thank you both for replying to me.

Clark drives a power wheelchair since his brain injury left him a quadra-paregic. He drives his chair really well; but, still needs supervision to make sure he doesn't run off the sidewalks or into things he isn't familiar with.

Ivy, Clark doesn't have any "normal" friends. Only those that are in his life skills class. There isn't much socialization outside of school. Clark was mainstreamed until the 6th grade and then, the rest of the kids went on without Clark. He was then placed in a life skills class and that's where he's remained. The kids in the rest of the school are kind to Clark; but, he is so far behind the rest of the kids. He gets along better with our grandchildren who range in age from 16-8.

Clark is with our MHMR HCS(home & community services) program. We live in the country so services are really limited and we are in the process of switching over to Consumer Directed Services. We are hoping to be able to find services we need for Clark and ourselves. We lived in the DFW area until 14 years ago and made this move as my husband and I prepared to retire. My husband is now retired and we both are caregivers to Clark. I am so blessed to have a husband who is as loving and gladly works with me to care for our son. I have found out that that is not the norm when dealing with a special needs child. I have tried to work several times since Clark was injured. But, I can't and care for him. Not in a small town. There isn't much work here to do.

Lori, we are trying to find ways for Clark to do some volunteer work. If not this summer, then next summer and certainly by the time he ages out of school in 2 years. I can see myself working with him, since he needs 1 on 1 care. But, I think our sons need work, even volunteer work, to feel like they can do what the rest of us do to some degree. Tho, sometimes I find myself putting my feelings on Clark when he is just fat, dumb and happy to play Nintendo and watch tv. lol! I know it isn't funny; but, it's the truth.

It is so good that you started the tbi/stork support group! Good for you! We don't even have 1000 people in our little town. Clark goes to the next town over for school. Keep us posted on how your group goes.

As for opening a club house for kids like ours? We can't even get the community to open one for the regular kids........let alone for my son!

Clark is fed through a feeding tube in his belly. Are either of your sons tube fed? Clark's brain injury caused him to develop dysphagia of the throat and mouth. Meaning that those muscles don't work well enough to keep him from choking or he doesn't swallow at all. I also catherize him since he now has a neurogenic bladder. He takes about a dozen different medications daily. I've had doctors tell me I should be a nurse. I've said"no thanks.....taking care of Clark is all I can manage!" :)

I will check back here tomorrow if I can find it again.

I am so happy to be chatting with other Mom's who have adult son's with similar issues to mine. If I could, I would wish that all of our son's had not been injured and could live normal lives. Instead, I pray for us to have the strength to do what we need to take care of our loved ones.

Patsmom

Hi Clarks Mom,
You really have your work cut out for you. What a support team for Clark!!
Pat doesn't have friends that visit either. That is another reason why I have decided to get him into our community. There are several people who befriend him who are not his age- that's ok. That is why the support group helps too. Everyone has their own trials- but there is common ground to share as well.
Take care.
Lori

Ivy

Hi Clark's Mom and Pat's Mom,
Yes, it is good to have others to talk to who are going through similar situations. Hopefully we can feed off each other's ideas and recommendations.

I am happy to hear that you are starting your own support organization. It really helps the caregivers just as much as the survivors, sometimes more. We have a wonderful support group that we attend once a month (too bad it's not more often). We sometimes have 50 or more people there. Although Jim listens to all the survivors speak of their problems I don't think he really relates it to the problems that he has since he doesn't think there is anything wrong with him.

Do Clark's siblings help out at all? Does Pat have siblings? Jim has one sister who is 4 years younger than him and will come up to stay with him if we want to go away. She will also come up and take him out for the evening to some of his old haunts occasionally and they will hopefully run into people that he used to know. I just think it's good to get him out of the house with someone other than his caregiver or us.

Jim only had a feeding tube while he was initially in the hospital. He spent 3 months in a rehab. hospital and came home physically able to do most of the things he did before. He was a little unsteady on his feet and had trouble with stairs and fine motor skills but relatively minor problems. His incapacity is his memory, cognitive skills and executive functions.

Jim is able to shave himself but has to be watched while doing so. He is actually doing better at remembering what he is supposed to do to get ready in the morning but has to be reminded of those things. I just read a book called "Brain Injury Survivor's Guide" that has some great ideas to prompt the survivor's on daily living issues. I have read just about every book that was written about brain injury, and ones by a survivor or a caregiver.

We also have a TBI center right in the town where we live. In MA though the brain injury association stipulates that only people with traumatic brain injuries can have a case worker to help them. Jim's injury is considered an anoxic brain injury since it happened due to a lack of oxygen to his brain. He is not eligible to have a case worker but they do let him attend their recreation programs which take place every Wed. and Sat. It's good for him to be out with other people to practice his social skills.

I agree that the boys need to find something to make them feel good about themselves. Jim is perfectly happy watching TV all day and has mentioned several times that he's bored. He used to do concrete work, brick laying, etc. and just recently put some stone work on our foundation. I was amazed that he could still remember how to do it. People in the support group told us that it was easier for them to remember things that they used to do rather than learn anything new, which they felt is virtually impossible. I did take Jim to the MA Rehab. Association who read his neuro-psych. reports and decided without further testing that he is not ready to go back to work of any kind. I didn't think it was fair to assume anything but you can't fight city hall so to speak.

I hope to hear from both of you again and I'll follow your sons' progress with interest.

Ivy

ClarksMom

Hi Ivy and Lori!
It is so good to see that you both have come by to read again.

Ivy, Clark's siblings don't live close by to help us with his care. My daughter helped a couple of years when she lived here; but, she is now in a different state and is dealing with her own health issues. My middle son lives across the state and my oldest son has 5 children and lives a 2 hour drive from us. Clark loves his brothers and sister so much. His sister called to talk to him this past Saturday and he was almost too excited to talk to her. lol!

Clark will be graduating this coming Saturday night and the oldest son, his wife and 5 grands are coming in Friday. Also, my DH's father and stepmom are coming the same day. We don't have room for all of them, so some will be staying in local motels. My mother, sister and brother in law are coming in Saturday. We are having a cook out after graduation for everyone. Goodness........it's such a happy time for us. Clark has come about 200% farther than the doctors predicted! :) BUT......I will be glad when this week is over. I'm pooped already!

Ivy, you asked what state I live in. I am in Texas. A big state with lots of programs; but, lots of red tape too. we have been blessed to have people who have pointed us in the right directions to get most of the help we need. We are parents who get calls from the school and doctors offices to please talk to other parents who are new to brain injuries and see if we can help them get started, especially since we've moved to this smaller town.

Lori, you asked if Clark shaves himself? Well, he has cerebral palsy and dystonia, so shaving is not something to trust him with! I have a hard enough time shaving him. We do however, have a small battery operated shaver that we let him practice with. He wants to do all he can to help us. And I believe if he could do it all himself, he would. I brush his teeth and wipe his mouth out with a washcloth since he can't spit. He has a terrific gag reflex!

Ivy, it is so great that Jim did the stone work around the foundation!! I know you must be thrilled to see that is still something he remembers. And Clark also has an anoxic brain injury and that does make a difference in the services he can receive.

Do either of you have close friends you can talk to? I don't; but, I do have 2 sisters that I can bend their ear from time to time..........

See ya later.

Have a great day!

Shari

Ivy

Hi Shari,

HOORAY!!! Congratulations to Clark on his upcoming graduation. What a great achievement after the doctor's prognosis. You will certainly have your hands full with all your company too. It should be a joyous occasion for all though.

It's too bad Clark's siblings aren't closer but they do have their own issues and lives now too. I know my daughter would take Jim if and when something happens to us but I'm not sure that's the way it should be. I suppose we should look into the alternatives as we are getting up there in age too.

Most of my co-workers are good listeners and very understanding for all the time I need to have off. My best friends have retired and moved away. We do still talk but it's not like being together in person. My only brother passed away last year. I know they all mean well but unless you are living with this type of issue every day I don't believe anyone could understand the heartaches and problems that surface.

It's funny too that the support group facilitator always gives my name to parents who are new to this journey. I know I would have appreciated someone who had been through all the red tape when we first started getting involved in this process. The last couple I talked with had a son Jim's age who was involved in a motorcycle accident in October of last year. He came to the first support group and sat there very disinterested. She told me later that he didn't know why she brought him there and that he wasn't like "those people". Maybe it takes a longer period of time to come to terms with what the deficiencies will be, I don't know. I felt sorry for her though because like you, it was only the parents to give him the 24 hour supervision that he needed. We all need support and a good ear lots of times. Please feel free to get in touch with me whenever you need to or want to bounce something off someone.

Ivy

Patsmom

Hello Shari and Ivy,

Patrick has only been disabled for 5 years this July. I too have struggled with the fact that disability is disability. What I mean is that Pat may have some advantages with his physical health, but is very severely injured cognitively and basically no short term memory, unlike the developmental disabled community. I am fortunate that we at least have the programs in place with the department like the sheltered work program.

Pat didn't want to go to the workshop at first- he thought he didn't belong there. I actually had doctors tell me that he didn't either- but It's all we have in our town, and tbi doesn't get much press or funding here in IIllinios. Our Govenor made a $10,000 cut back in disablity funding last year. It will be a while before I can get funding for low cognition/higher IQ tbi-type folks in IL.

Pat falls outside the IQ requirement to receive benifits from the DDT programs. People with an IQ greater than 70 can not benifit from the sheltered work programs in IL. I guess what I'm trying to say is although Pat is not developmentaly disabled, and although because of state policies, he can not benifit from state DDT programs, I believe everyone can learn a thing or two from another- reguardless of the disability. It's been a hard lesson to get- and some of my familiy still doesn't understand.

I was wondering if either of you have ever heard of the Joni and Friends Retreats. They are for anyone, any age, disabled. You can read about Joni Erikson Tada and the retreats at JoniandFriends.com. We are planning to go the second week of June. It's a wonderful week- you should check it out.

Glad I caught your posts!
God Bless,
Lori

Ivy

Hi Lori,

My son sounds very much like yours. He has only been disabled a little over 4 years and physically he is very much the same as he was before his arrest. His cognitive skills and memory problems prevent him from being left alone. He was to be married in May of 2004 and his arrest happened in March of 2004. His fiance stayed with him and took care of him for a year and a half and then decided it wasn't how she wanted to spend her life and left. He still doesn't understand why she left and is very depressed about it at times. He does take an anti-depressant but he still talks about and misses her.

We may want to pursue a workshop type of environment for him after what you've told about Pat's experience. It's too bad the state pigeonholes people by IQ and not by what their actual disability is.

I will definitely look at the website for joniand friends.com. I was not able to get into it at work for some reason so I'll try at home. Thanks for the suggestion.

I'm off for the week-end but I'll touch base here on Monday. Have a great week-end.

Ivy

NWWriter

Hello everyone,
You are all GREAT. I haven't read the postings in a long time and it's really wonderful how well you're all networking and supporting each other. I'm an abi survivor (sudden cardiac arrest while playing softball in 1987) and a couple of things you all wrote about hit a chord with me. First, I use a desktop calendar in my kitchen for my daily calendar. I used to get double-sided magnetic tape to stick on the back and then mount it on my fridge but when I got a side-by-side fridge I lost that pattern and had to invent a new one.
I learned about that calendar in therapy where I also learned to target what systems were working and see if I couldn't attach new behaviors to those. That way the "new" behavior is remembered by the part of the brain that tracks "old" behaviors. The phrase "I always..." is a good indicator of successful neuro paths. That phrase reflects a routine that's been learned. So when I see one of those successful pathways I try to connect another behavior to it which I may be having problems learning/remembering. So now, instead of "every time I go to bed I set the alarm" I might start saying "every time I go to bed I set the alarm AND take my bedtime meds."

Secondly, the reason long term memory skills survive longer in trauma is that the brain knows they're more important to our identity (who am I? where do I live? what was my childhood like?) On the other hand, short term memories like "what did I have for breakfast?" aren't really important unless we make them important.

Patsmom

Hello Everyone!

Something about spring that keeps me smiling- the flowers are beautiful here in Streator,Il. I had a peony that I almost gave up on. It never bloomed for several years. I didn't replace it- and I kept a hopeful eye that one spring it would eventually bloom. This year it did! It's beautiful. It's blooms may not last that long, but I know that it will show it's beauty again next spring.

Kind of reminds me of Pat. Time goes by and I can't recognize improvement- and then in a moment he reveals an awareness that is beautiful- I'll usually try to reinitiate the behavior, usually with failure- but I am more hopeful then ever that he will initiate the new memory/task/good behavior on his own again.

Noone said life would be easy- but even with all the trials we "think" we have- isn't it marvelous when something goes right?

Thanks for the insite Mary. Keep them coming- They really give me more ideas to how I may be able to help Pat.
Thank you.
Lori

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