Thanks for your support and reminder of using the ankle brace. He is such a determined man and has a great support team. I also think that doctors and therapists are the ones that plateau and not patients. Keep trying is what I say and don’t give up. You sound like you have made a remarkable recovery.good for you to keep going forward.
Deb
Thanks for your reply Ann and your husbands story. Sounds like he is doing well. Will also look into the book. It seems to be recommended by many here.
Deb
Wow Kristy! That’s great! Gives me hope! Just what I needed
Thanks,
Deb
Thanks for the reply Lisa. I am seeing improvement. He couldn’t say words with a P I. Them a couple days ago and yesterday he did. I had him say a sentence. " Debbie is pretty". He said it and then we both laughed!
Deb
It definitely takes a lot longer than a little over a month. I had mine on the other side of the brain, and even with age on my side, it still took me a while to get everything back. I was in inpatient therapy for 6 weeks, and I was still using the wheelchair up until the very end. I never had aphasia because mine was on the right side, but people in my rehab more or less recovered most speech abilities. Just give it time. I had a solid year of rehab in before I recovered most functions.
Thanks for your reply. Glad to hear you are doing better. I am working with him doing flash cards and helping him pronounce words. He is determined to get better. I told him that he used to say I was bossy, well now that’s coming in handy. LOL
Deb
Hello Deb!
I f you read my long story, you will read my experience with the brain bleed, therapy, etc. Pray for patience. However, you will notice that he is more inpatient than you--only because he was so accustomed to doing for himself! Get him into physical therapy ASAP! My paralysis is on my left side-my arm, hands. While you are sitting working on his speech, place a small ball or purchase clay for him to squeeze (daily). Do the arm exercises--bend it back and forth--stetch his hands--fingers to prevent the curling of his fingers. Try to find an agency that specializes with persons who have had brain injuries. I am in California (San Diego) and worked with a non-profit agency called The Challenge Center. Find a local Center that has a heated pool--we have one called The Joan Kroc Center--they work with people who are physically disabled--equipment (chair) that places you in the water, etc. By no means allow him to "tell you no" when it comes to exercising his hands, arms, or legs! I was so angry about my disability, I went on this pity pot until I grew tired of me! Do not allow atrophy to set in his arms, hands, etc. I did not intend to write you a novel, but to share with you what I experienced and the after effects of not exercising. Although I can walk inside my home and outside (carefully) w/o my cane, I am not there! Your patience is great--it is his patience he will need to address because he will try you! Don't forget to get the clay, a small ball that he will learn to squeeze. Gently rotate his affected arm--clockwise and counter clockwise. Keep that arm moving to avoid atrophy! I am here, just send me a message! Blessings!
Thank you for your reply. I am doing exactly what you suggested already. I have been making sure that he and I move his arm constantly. I told him if we don’t do this he will wind up with a curled wing for an arm! He cannot yet squeeze my fingers, but I have the soft ball ready to go for him. He was a very fit man before all this and went to the gym on a daily basis, so he is not opposed to working out. I told him this is his gym now and he wants to do it. He had 3 weeks of intensive therapy at a stroke center and I watched them work with him. I learned a few tricks that they did like using ice on his limbs to wake up the brain and to help make the connection that something is happening so he can better concentrate on the affected limbs. We have talked about the heated pool and there is one here in our area that has the access for handicapped. I will keep updating his progress. Thanks again for your support. I have learned more here on this site than anywhere else because the members are very specific with their AVM recovery.
Deb
Thank you for sharing your story with me. That had to be tough at such a young age. What you have going for you is the mental strength to keep moving forward. That is very powerful. Never let any kind of rejection stay with you long. Let it go and keep a positive attitude. It is those that reject who are the weak ones, not you. All we can do is feel sorry for them. They are the ones with narrow thoughts and small brain capacity.
I admire your perseverance! The world needs more people like you. Keep up the good work.
Deb
His symptoms sound very much like my AVM bleed. Mine was in the left parietal in 2011. I suffered complete right side paralysis and numbness and aphasia. I moved my leg after 1 week, was on a cane after 2. I first lifted my arm (with great difficulty) after 3 weeks. My hand didn't get anything back for 2 months, and my arm was disabled enough I was using a sling during that time. My speech was slow as well. I had to relearn how to make each sound and transition. After that I had to think really hard about making the correct sounds.
I'm now 2.5 years out. My speech is a lot better to the point that people wouldn't usually know. I still hit words I stumble over however. My leg is about 95%. Hand is about 40%, I can type slowly if I look at my hands, I can also kinda use a mouse. I don't try writing much but it's really bad :P
I don't know how much age is a factor but I was 27 when I had my AVM. Everyone is different. Progress is always faster at the start but even years later there can be improvement, it just requires more time/effort.
hope this help :)
Sean, thank you for your reply. Yes your information does help because it gives me hope that he will recover these lost functions. You both sound like you had almost identical issues. So glad to hear you are doing better. He is 52 but was very fit before this and went to the gym everyday. He is working real hard. Today he lifted his arm for the first time. I do see slight speech improvement every day. I had him repeat a sentence today with difficulty but we both had a good laugh after. I made him say " I have the best girlfriend"
Deb
Hi Deb, We have communicated in the past on this site and good for you for reaching out here. You continue to be a remarkable girlfriend and I hope you are encouraged by all positive responses you have received. I will continue to pray for you and please take care of yourself.
Susan
Thanks for your continued support Susan. I don’t know what I would have done without this group. I have received so much information here that is so precise to what we have been going through. He is doing great and walking with the cane better. He was able to lift his right arm a little too! I have been working on his speech. He still has trouble with full sentences and can not say one on his own. He can repeat with difficulty. I had him repeat
" I have the best girlfriend". Then we both laughed!
Deb
YES, but each AVM and recovery from AVM brain surgery is different for each individual.
I am 52 TOO!
In 1990, when I got my AVM fixed quite well, during my medical journey, I suffered 2 strokes during 7 brain surgeries! When I started to recover, I was 1/2 paralyzed, blinded, could not walk, talk etc. After 1 1/4 years in rehab, I got everything back physically. Let me just say, that your boyfriend 'fifth week' is just a very, very beginning of his recovery! I was told that my recovery was going to be @ 12 YEARS, but after 12 years I STILL got gains! I feel I might get even small gains for the rest of my life: Power From Within can change ANYONES recovery outcome and statistics!!
Good luck to both of your futures!!
Lisa
Thank you for your reply Lisa. Sounds like you are one of the success stories here. You have been through way more than my boyfriend and have recovered. This really give me hope. He really does have power from within and is determined to get better. I don’t believe in plateaus and know that if you keep trying to improve you will.
Deb
You are welcome, Deb and thanks for sharing the best girlfriend story ... lol. Now let's hear it for your boyfriend's continued improvement!
Hi, i lost the power of speech totally, almost 20 years ago now (i was 18!). I could just pronounce one words. But, over time, i can handle my speech, to a degree. Im not very good at gving out full stories, not very good at following jokes, or storing a huge amount of info form a boss etc - but i can handle it. My story here - http://www.differentstrokes.co.uk/index.php/survivors-stories/stories-by-age/345-age-17-reg
Also i made a short tips "Aphasia - Trade Secrets" - http://www.avmsurvivors.org/forum/topics/aphasia-trade-secrets?xg_source=activity
Hi Deb, my brother had his second surgery on a cranial AVM in May 2012 (at age 23), and he had the same issues afterwards as your boyfriend. He's overcome a lot of them, and only has slight issues now...I can give you more info if you like, but he did (and is still doing) a lot of speech and physical therapy and is a real fighter. Your boyfriend is still in very, very early days and will, I am sure, recover a lot of what he has lost.
A few things that may help:
-where we live, rehab was covered for several months, so he lived at a rehab facility for a couple of months, then travelled there daily. He received speech therapy, occupational therapy, physiotherapy, counselling etc. and all the therapists remarked at how much he pushed himself (sometimes too much!) and what a fighter he is - refusing to give up made all the difference, I think
-a couple of years ago, when I was stressed about being at home with two young kids, I read a blog that said about child-rearing "the days are long, but the years are short" and that is how my brother's recovery has been. I found keeping a journal of the "little" things he achieved every day helped a lot to spur him on and boost him when he felt down
- he made huge leaps and bounds with a private OT - he went through almost all of his savings to pay for it, so I understand it's financially a stretch, but if you can find a good one, it can pay off...if you let me know where you live, I can see if his can recommend anyone. I know my brother's is very well respected
It's so, so hard to watch someone go through this, and you're doing a wonderful job. Your boyfriend is lucky to have you help him along! Best of luck to you both!
Hello DeSis, I hope Deb is encouraged by what you shared but one great aspect of this forum is the impact on others. Thank you for sharing information about your brother's recovery and you are a marvelous sister especially with 2 young kids! I am thrilled for your brother's success and I'm certain with a fighter attitude, Deb's boyfriend will be successful too!
Thank you so much for sharing your story. I agree that therapy every day is important. Fortunately for my boyfriend he has his family that helps him and I also have a background in teaching and have shown his family simple everyday things that they can do with him to aid in his recovery. I do see improvement all the time. Their have been no setbacks and we are moving it forward. He is also aware of what he needs to do physically to build up his strength. He is working very hard at it. We are his therapy without breaking the bank. Private care is so expensive. He has Kaiser and we are milking what ever we can get through them. Today was our first outing together. We went to breakfast at our favorite place, went a saw a comedy at the movie theater, then went out for dinner. He did great and we are both exhausted. It was great to do normal life things again.
Deb