HostTracy

This is just my opinion Bianca but I would I would press the Drs. for something...anything. It seems to me like she is improving if only a small amount. You are I know her best advocate find someone who believes in you and your mom. Dig....I wish so much energy and love. Hang in there and always come back again wit anything Bianca.

I'm not positive if any of these will help but hopefully you'll see something that will. What has the Doctor said?

Tracy

Found one:

http://strokenetwork.org/newsletter/articles/brainstem.htm

Tracy

Here is one link but I'm finding it difficult to find the information on Strokenet.

http://www.strokeassociation.org/STROKEORG/AboutStroke/EffectsofStroke/Brain-Stem-Stroke_UCM_310771_Article.jsp#.V74c9WBriUk

http://health.cvs.com/GetContent.aspx?token=f75979d3-9c7c-4b16-af56-3e122a3f19e3&chunkiid=645094

http://stroke.ahajournals.org/content/6/3/328.full.pdf

http://www.brainline.org/content/2010/03/facts-about-the-vegetative-and-minimally-conscious-states-after-severe-brain-injury_pageall.html

http://www.rainbowrehab.com/pages/understanding-stages-coma/

Tracy

:hug: Bianca I am so happy you and your family that mom is showing improvement. i didn't have a brain stem stroke but let me what I can find.

Tracy

Bianca I am praying that your mom wil get better and better. Strange thing about all survivors that I know of who had a stroke always have their worst health issues at the beginning. I'm not saying there will not be any residual issues I think that the road is long for stroke victims and their families. There is hope just by reading some of these great members' posts. Be as good to yourself as you can right now...there is hope. Eggo and Kelli I too have persistent Central vertigo while standing and walking but I can drive too. During my therapy we experimented with weighted vests for the same reason you were saying Eggo. My body for the longest time just didn't have the connections it needed to know where I was in space. The weights were a way of grounding me. I still have continual worsened balance issues at night and rarely drive unless I'm feeling exceptionally well that evening. My therapist told it would also help at night...to ground your body. Take or buy a cheap vest like a hunter vest (usually a khaki material not the heavy fat fluffy ones) and sew pockets at different points it depends on which side affects you the most or if you are like me and had a bilateral stroke it can be pretty even. you would want to have pockets on each side front and back, shoulders, and upper and lower and you can use rice bags (a DYI project that fit into these pockets. Experiment...think about which way your body has a tendency to sway and then weight each side to sorta counter balance that. It's worth a shot.

Tracy

Hi FireSpirit! I do understand about having panic attacks. I did have like 2 in many years before my stroke but after I have had massive ones and am on lots of medicine for them it hasn't stopped completely but I have a bit of relief. They can be scary...remembering your stroke, feeling out of control, terrified that something bad is going to happen, it can definitely cause the symptoms you were describing. Heather I had to learn that for myself to about worry...some I would have so much anxiety before I was medicated that it literally felt like my head was going to explode. That feeling....I could just feel moving up from my head to neck to my head. It scared me so much. I am not a devout religious person but I am Christian and I found something that can be read and anyone could use these words from any religion and can put the name of their higher power in place. The Serenity Prayer. FireSpirit I feel for you and send you hugs  :hug: .

Anxiety and Panic Attacks have plagued several of us at least once if not many. Be sure to talk to your Doctor. He/She can really help and point you in the right directions for other types of help like Psychiatry or Psychology. Please let me know if I can help in any way. Stay strong FireSpirit.

Tracy

http://www.payperprayer.com/serenity-prayer/

Hi Rick it's very nice to meet you. Your stroke happened about 3 months prior to my own. All I can say is there are great people here...ready to cheer you on, answer a question, lend an ear, lend their own advice based off of their experiences and understand what you have and are going through. So Welcome and know you are not alone!  :welcome:

Tracy

Reading back up Lin I realize you were the lady who told me about having multiple Neuropsych tests. You are a Pro ignore said entry above^^^^^ I mean unless it helps you in any way. 

I do agree about the Neuropsychologist helping. She gets into the depth of your brain...at least mine did. She really could tell me things that no other Dr. had about detailed deficits including ADD/ADHD. I was diagnosed ADD as an adult many many years ago by my first Psychiatrist who was really great and mostly worked with children. I did not see a Neuropsychologist and I'm not even sure if it was as much of an option back then if at all. She did lots of questionnaires and evaluation procedure to come to the diagnosis then. My Neuropsychologist told me she wasn't so sure if my issues were ADD before. After the assessment she went through every area with me and concluded that many of my deficits now were related to the stroke and many were present before the stroke but the stroke made them much worse. Basically she said my Doctor probably did give the right diagnosis back then but now any issues I continue to have are much worse along with new ones that make those first issues so much harder. I was thankful to know more about my brain and directions to improve on deficits. I know longer take medication for ADD because I too am terrified of any worsening it could do while I'm taking them. Again though they were amphetamine based...today there is more to try than amphetamines. Best Of Wishes Lin.

Tracy

I really love the lyrics. It really fits. It has meaning to me and I feel like putting my stroke boxing gloves on!!  :rock:  :music_dj:

Lin I love your positivity. It is super encouraging to me today cause I think my morning has been a pity storm LOL. I have been playing "This Is My Fight Song" by Rachel Platten all morning...loud very loud (and I don't like loud things). I'll share a link so you can listen and read the lyrics. I believe this is now my song.

Tracy

Very welcome Lin, good luck on good answers. You can also ask about the other non amphetamine medications...there are a few. None of them worked for me when I was being treated for ADD but treatment for after a stroke they may work wonders. I know they have for many at least for ADD/ADHD treatment. Straterra, Kapvay, Intuniv are the ones I know of and have no idea if they can be helpful but no harm in asking about them.

Tracy

I agree with Heather...no harm in seeing where it goes. Having ADD forever before I had my stroke I am familiar with those medications. They do cause problems like interference with sleep, and can severely decrease your appetite (sounds like a great side effect but this can cause a lot of issues in its' self). Depending on what type of medication it can also increase blood pressure or heart rate...but there are lots of different kinds and not all are amphetamines and don't have the same side effects. That is not to discourage you in the least though it's best that you talk with your doctor and it really could help you. 

Tracy

Thank you Heather. I agree a direction is a very good thing.

Tracy

Thank you Scott, Heather, David and Lin for being so supportive!   I got the results today and I am feeling positive. I feel a little less crazy because she said what I'm having trouble with is real and more than likely caused by the stroke. Cerebellar Cognitive Affective Syndrome. She told me what I should do for support and to try and improve. I feel like a have a direction. It's a good feeling!

Tracy

Thanks Lin - It's been a year since my stroke and this is the first neurpsychological testing. Did you say you had numerous times?  It's the first I had ever heard of it. I go tomorrow for my results but I have not allowed myself to think about it. I don't know what it will say but my husband keeps reminding me that it's not about good or bad it's about where you are and what can be helpful. LOL Well that is easier said than done or felt. We will see. I will keep what you said "Be easier on yourself than I was" in mind. I very much understand what you are saying. I will let you know how it goes.

Thanks

Tracy

Earlier this week I went to see a Neuropsychologist that my Neurologist had referred me to for an assessment. I was not expecting so much exhaustion. I could only complete half and then the Dr. said she would rather I come back this next week because she could tell it was affecting me. This was already 3 hours into the assessment. She said "We are almost through just maybe another hour or two". During the visit as we did "tests" I could feel the back of my head...I don't know how to explain it pressure, pain, like a vice was there. My eyes also felt like I had weights on them that were getting heavier and heavier. Along cam stuttering, dizziness, tears... it was hard! I think it reminded me of when I was struggling way more than I am now with the physical symptoms. I kept thinking to myself "These are not hard tests": Word recall, number recall in order which got longer each time we did it, remembering numbers in a sequence, and numbers that I had to say back to her backwards are some examples. Needless to say I was doing much worse in my opinion than I thought I was going to. Next week I am not going to place these expectations on myself. It didn't feel good inside when I did. I went home and slept for 6 hours in the middle of the day! When I woke up I think I may have even been worse! I couldn't type worth a flip, I felt like I had just gotten off a fast fair ride, and I could not get rid of this really icky headache. I called my mom to go over what I did at the appt. (she had been expecting a call from me to let her know) and she was like "Honey, are you ok? What happened?". I stuttered as i told her about the visit and that I was ok and would I'm sure feel better after a good night's rest. 3 days of recuperation! It took me that long to get back to myself. I still have to go back next week to finish and I have been trying not to think about it. I told my husband it was like someone had stuck a finger into the area that really gets me out of wack. That's the only good way I could explain it. Have any of you had Neuropsychology testing? Is it just me or is this somethig that affects others?

Tracy

I bet it was fantastic Deigh!! I love to hear stories like that!! Now that is a way to relate to people...we all have different stories but there's something fascinating about all of them. At least that is what I think. Mike I haven't forgot about you. We were the same age when our strokes happened and the same kind of stroke. How are things coming along? If you have moments of doubt or regression just hold on tight, for me things eventually pass. The pitfalls you want to look out for are different for everyone I have known except that immediate recovery is quick and longterm recovery could be quite lengthy. My only bit of advice which I think everyone here has said before is keep working...even when you don't feel like you are progressing. I also write down what I call "milestones" or "aha moments" so i can look back and gauge progress that I may not even remember as progress if that makes sense. It helps me keep perspective. I hope things are well...let us know. 

Tracy

Deigh - I so understand! I can speak pretty good most of the time but sometimes I can't get out what I really am trying to say. My wonderful family thank goodness are great at speaking "Tracy". For the most part I can say all sorts of round about things and they can usually hear what I'm saying. Others not so much sometimes. I will tell you a secret (well I suppose everyone on here that reads this will also know) I had to get dentures last year (before the stroke) and during my early post stroke days I was on a loopty loop roller coaster every day. I couldn't remember a thing, I couldn't find half my words and of all things I placed my denture in a napkin. I looked everywhere for more than a week and have given in that I threw them in the trash and now they live wherever our trash goes. (OK getting off topic) Without them for about 6 months and no one could understand me. Feeling really strokey and no teeth.  :Tantrum: Was soooo frustrating! I too would and still do have moments where I just lose my speech and end up crying. Then I have heard "Why are you crying again! It's always something!" (along with eye rolling) This person I love dearly and she loves me the same. If I was a mean horrible person I'd take my shoe off and bop her right on the nose. I might not could tell her why but I could do that. LOL Thank goodness after a while she and I began communication again and I feel like the world has rolled back onto it's axis again. I also have had moments where I have been in your exact situation. I've had to just walk away to gather myself or to just get away period. I commend you on your persistence! My daughter asks me all the time why I am so upfront sometimes. I can't change that I had a stroke, I don't know how long it really will take to fully recover or even if I will always have issues. I tell her that I am less worried about someone knowing I have had a stroke than someone not knowing and my entire day or a few are just out of wack. I'm not ashamed to say that people are much kinder and patient if they do know. I have no idea if this is cohesive at all (rambling). I just wanted to share with you that I hate that part. It makes me mad. It makes me feel like someone I am not. I am rooting for you to do public speaking again ! I think it would be fascinating and I have never heard you give a speech. Let me know if and when! I'm going to stop now before I keep talking LOL.

Tracy

Hi Mike!

I also had a cerebellar stroke when I was 43 and almost to my 1 year anniversary. I read that you worry about slower recovery...me too. I have had several incidents or times where I have regressed. During those times its hard to believe that time might be your friend. Congratulations on getting back to work so soon!! Even if it is less than 100% that is fabulous news! Working can keep you motivated I bet...just rest when you need too. I just joined this group a couple of weeks ago...but I have really had lots of great encouragement and I really enjoy reading what everyone is saying. I don't know about you but everyone including my family is somewhat perplexed when I talk with them about the stroke me. For the first time LOL I have spoken and others have related!! Last night I even shared some what I call "stroke humor" that I have read here on this site and both my daughter and husband just looked at me LOL. "I don't get it". So that old saying "It takes one to know one." has rung true a few times for me. Welcome!!! 

Tracy

Newrelease - I love those little guys! If I can't speak how I feel or if someone can't hear, see, get, etc. how I feel then those little guys can be so helpful LOL. I identify with those two all the time and reading that you do too makes me laugh! Yes my daughter is a Godsend and I am so happy that she has been right here with me. I must tell her more often. I was always a sucker for a good mystery...I truly hope that is true-I mean that besides camaraderie (I can feel desperate for this sometimes) I can pass on what I have been through or how I feel or even spotlight a question or concern. I am doing well btw. I just posted this same response in another forum - that I am doing well with ups and downs and good days and not so good days and that I try and make the best of it. It's my pleasure to meet you! 14 years? Oh please share your wisdom!! Thank you again!

Tracy

Thank you Fred LOL. Oh do I know, I feel like I have been surrounded with seriousness of stroke. Thankfully I love to laugh and even looking back at very disoriented times where I may have had severe anxiety can be particularly funny. My daughter and I reminisce about the past year a lot and it is very therapeutic for me and probably her too. Nothing like a good wholesome laughing session!  

Tracy 

Kelli - it is great to know someone who isn't perplexed every time I try to explain it. Thank you! I have seen a neuro-optometrist and he did a battery of different tests for my eyes. He prescribed therapy but unfortunately it is considered "experimental" and many insurances including mine will not pay for it. I know like many others that my my medical bills are CRAZY and I have been unable to pursue this course. I certainly have not given up by any means. I search for answers or possible things I can do to improve this all the time. I'm sending a hug to you because I know first hand how this feels. When the sun starts to float away at the end of the day know that I am right there with you.

Tracy

Oh wow Kelli...I can only imagine how frustrating it would be for me. To have such a crazy thing happen when we are doing things to feel better is so ironic. I'm finishing up Vestibular Therapy in the next two weeks. My Neurologist decided I should try it since I still have a lot of dizziness and balance issues but I have not seen any improvement really. I have strange regression when it is dusk and dark which involves even more dizziness than during the day. I think I have noticed that it may have something to do with my eyes and how they focus. I have done a tremendous amount of PT in the dark of which I am a blubbering mess when I am finished for the hour...still very little improvement. It's sort of a mystery for my Therapists LOL. I guess I'm not sure how all of that works...vestibular,vision, spacial when it comes to stroke. I haven'y given up though...still make myself do the things I don't like i.e. being in the dark. Maybe there will be improvement eventually. 

Thank you for the nice welcome Fred! Twelve Years...now that makes me feel motivated   . 

Tracy