Communication help

I don't have the aphasia you mentioned, but I do have a harder time putting thoughts together and articulating them. This is very frustrating since I'm a writer. It now takes me 3 times longer to write a book, and a good writing day involves at least 3 naps.

I'm also on medication that is a mood stabilizer for brain patients, which has helped a LOT!

After my AVM rupture I was on a ventilator for nearly 3 weeks which is much longer than I was supposed to be, but it took 7 surgeries to remove the AVM and try to mitigate the damage from the bleed. Anyway, when I woke up from the surgeries and after all that time on the ventilator I couldn't speak, and it HURT. My vocal chords were bruised and extremely swollen.

I was VERY frustrated that I couldn't communicate. I couldn't even write at that point since my hands shook so much. However, I took one semester of sign language in college and remembered enough of it to communicate basics even though not very many people understood. But it helped me get at least some points across. It might help both you and your partner to get an ASL (American Sign Language) book and learn some together so she feels like she can communicate better. They also have some great You Tube videos that teach sign. It was a vast relief to me to be able to even to that. Just a suggestion.

I wish you both the best. Just be patient with her. Recovery takes a long time, and everyone heals differently. My 4 years post surgery date is coming up in November and there are still recovery steps I go through. I still have a left visual deficit that I went through a year and a half of vision therapy for.

Hang in there and try to help her come to terms with her new normal and don't make her feel like she has to rush to recover. I know it's frustrating, but having been on her side of this equation - everyone kept expecting me to just get better suddenly and it took lots of time. I do still have deficits, but I've made peace with them and finally, so has my family.

Blessings to you both

Tina

I am using Gemiini.org with my husband - great program made for children with autism and having extraordinary success - but I came across it at a brain injury conference as they are beginning to use it for such. I can’t tell you results as I haven’t used it long…but was recommended pictures and flash cards, etc. This program is ready made and shows the articulation, pictures, says the words, etc.

Hi again, Tina, and thank you for posting more of your own challenges. You reminded me that I learned and have told others that with this type of injury, think of recovery in terms of years and not days, weeks or even months. Your suggestion for You Tube videos is great for I have discovered you can find everything on that website.

Blessings to your family and you.

Blessings ~

Hi Tina! I was wondering about the vision therapy you had. I have a left homonymous hemianopsia and my vision is all cut up, as well as my peripheral field being gone. I cannot drive and navigationg in my environment is so hard. The neuro opthamologists aren't too encouraging regarding the use of prism glasses. I am three years post op and am no where near adjusted to this new normal and not driving. I had over a dozen hemorrhages that all led to deficits that I managed to overcome. Nothing though is quite like brain surgery. The recovery is brutal, as you well know. The fatigue is so great. Also, do you have the name of the mood stabilizer you mentioned that has helped? Good luck in your continued recovery....somehow, we'll manage! Also, my hands shake from ataxia and writing is so, so, difficult. All my fine motor skills are worse than ever. Any tips? I was told about a weighted pen for writinng and I've tried a weight on my writst, but not alot of success. Susan

Susan, I feel for you!

I also had the homonymous hemianopsia which is why they took my license away. But Vision Therapy slowly helped. I healed sort of backwards...lol... If I hold my hand up right next to my left eye I can't see it. But a few feet out I can see flickers of movement. And with my prism glasses on I can see/detect more movement than that on the left. And in vision therapy they train you to turn your head that way any time you detect any movement. So once my visual field test started showing that I could see some of that movement (flickers) on the left side, I met the state requirements and she signed off on my going to driving rehab. That was like the old driving test I had when I was 16 but more intense and I passed that easily, thankfully! I'm still VERY careful and very aware of my left side while driving. I turn off the radio, don't talk to anyone and keep my mind totally on the road. But I've been back to driving for a year and a half and I'm back to feeling more comfortable and confident about it. The eye docs, rehab docs and even neurologists were pretty doubtful about the prism lenses, but those in combination with the vision therapy really helped me!! As my eye doc said, my eyes are fine - they can still pick up everything happening on the left, we just had to retrain my brain to recognize it. I still run into things on the left when I'm walking and not paying attention but it's NOTHING like it was before therapy. Heck, I ran into stuff now and then before my rupture! :) My hands still shake a bit with fine motor skills - I rarely wear makeup now because eyeliner and mascara are a taxing effort for me. I try to avoid writing except for signing my name - I type instead. Luckily I was a touch typist - 120 w/m since high school and I didn't lose that, it's just a bit slower now. And if I let myself get too tired or go too long without eating my hands shake and I make tons of typos. I hope this helps!

Tina

Susan,

I just realized I forgot to give you the name of the mood stabilizer med. It's actually an anti seizure med that also acts as a mood stabilizer. I've never had seizures but since I have so much dead brain tissue still hanging out up there I'm at a higher risk for them. So I'll probably be on it for the rest of my life. But it helped my mood swings and mania lots! The mania felt like my thoughts were spinning - I would talk really fast and I couldn't get my thoughts out fast enough to keep up with my brain. It's called hypomania and I've heard from a lot of TBI patients - as well as AVM sufferers that they have had this. Anyway - the med is called Lamictal. You have to start at a smaller dose to make sure you don't have a reaction - some people have a severe rash that can be life threatening if not treated. Luckily I didn't have it and my meds lady stepped it up until I'm now on 200mg a day. It's a high dose but helps both and the brain surgeon and neurologist as well as the meds lady were all happy with the choice and I feel much better on it. There aren't any long term side effects - it's been out for quite a while. The only side effect I noticed was fatigue so I take it about 7pm every night and by bed time it helps me sleep. The first few months it made me really sleepy within 20 minutes but now I've been on it for nearly 2 years and like I said I just do it at 7pm every night, and if I'm not home - I have an alarm set on my phone and I just take it when I get home.

I also have some Klonopin that helped immensely with the post op panic attacks. I only take it when I'm stressed out and I know I need that extra help. I take it at night when I know I'm not driving because it's a controlled substance. If you take it in the morning and drive and get into an accident you can actually get a DUI for it. But taking it at night still gives you the helpful effects the next day and it doesn't show up in your system enough to impair you. But I only take it when I'm feeling stressed out or know the next day is going to be stressful.

Hope this helps!

Tina

Tina, I'm sure you know all too well, just how good it is to talk with someone who really understands. My story is one that has gone on now for 41 years, since I was a kid and had a massive brain hemorrhage due to an AVM that we weren't aware of. I was in a coma and took a long time to recover. My AVM has always been inoperable, due to location. Six years after my first bleed, I suffered another. This time the Proton Beam Radiation had been invented. I went to Boston, from S. Calif., where I live, for treatment. I had 11 more hemorrhages within 2 years after it. They wanted me to wait a third year and then receive more of the protons. I darn near died from more brain hemorrhages, but didn't want brain death due to too much radiation, so I waited throughout that third year. I had a hemorrhage soon after the second treatment and so, so many problems throughout the years. 38 years after diagnosis, the AVM reared it's ugly head again, leaking and creating a hematoma on my brain stem. In Los Angeles, at UCLA my neurosurgeon and team had to remove it and were able to resect the AVM that has plagued me most of my life.
You remind me of myself, in that it took much diligence and time, but I graduated from college in spite of ALL the brain hemorrhages and the hardships I was left to endure. Nobody knows just how hard it is to put mascara and eyeliner on every single day. I NEVER take a break, for fear that would be the easy way out. I do however need a nap by the time I've had a bath, shaved my legs and hopefully didn't cut them, and heaven forbid I have to wash and blow dry my hair! I manage my time, but really, I'm tired before I leave the house. It is so hard for me to sign my name. If I use a credit card and have to sign in the box, I am done! Typing is easier for me too. It's hard to use utensils and eat, it's all brain work. Friends don't get that going to lunch is NOT fun. It is so not like me to want to stay home, but going out in life, with these eyes is NOT fun.
They call mine a near total left homonymous heminopsia. If I hold wiggiling fingers up above my eyes& below them, I don't see them and there is a pie shaped blind spot that I see nothing in, in my left eye. Your vision therapy gives me hope. Was it anywhere in S. CA. I was in a brain injury day program for months and they worked on everything from cognition to my eyes. I bump into people, am startled easily by noises and other people. I don't want to open my eyes in the morning as I know what a day holds. I'm so grateful for the day, but so tired from the work and processing my eyes have to do. I wondered if you found a mood stabilizer that has helped. Tried several, and would hate to see my life without it! Tina, just riding in the car with someone else driving is so difficult. Seems like I can't judge distance and my peripheral field. I just lay the seat back and close my eyes. All this, and did I mention that I look as if nothing ever happened, making it so hard for others to understand why I just crashed into them. They all just think I'm a drunk! I guess, it's just hard faking it so nobdy know what I am seeing, not feeling, not putting together.....you get it. Thanks for listening. I really would like to know if you found eye help locally though! Be well, my new friend. Susan

Wow. I'm so sorry you had to deal with all of that Susan!

I experience a lot of that, but I've only had to deal with it for the last four years and only had one bleed, but I remember it vividly. I would've gladly taken child birth back that relive that night again! I'm so sorry you had to deal with that over and over!

I know exactly what you mean on all of that. When I ride in the car and someone else is driving I can't judge distances well and I end up holding onto the "oh shit" handle and gasping a lot expecting a crash at any moment. Luckily the prism glasses help with that while I'm driving but I only wear them to drive, to read the guide on the TV and to read menu boards in fast food restaurants.

Let me give you the info for my eye doc who did the vision therapy. She might know someone who does that close to where you live. She's amazing. Her name is Dr. Amin and her practice is called Advanced Vision and Achievement Center. Her number is (602) ■■■■■■■■ Her staff is amazing and all really helpful. In fact they helped me jump through all the hoops and fill out forms for the DMV so I could get my license back, along with the driving rehab ladies. If you need that info I can add that too.

Tina

I TOO HAVE LEFT HOMONYMUS HEMIANOPSIA....I AM 2 YEARS OUT NOW AND AM DRIVING AGAIN AND GETTING ALONG WELL...I HAD STERIOTACTIC RADIOSURGERY TO STOP THE BLEEDING THREE MONTHS AFTER THE RUPTURE...NO BLEEDING SINCE