So while I’ve been part of this site and community for years now, and have spoken with so many of you brainers, encouraged, sympathized, celebrated… I didn’t understand until last week how much more I really had to learn about your struggles. And I need help now.
My dad had a bleed (go figure he was trying to upstage me) 3 days after I got home from my AVM surgery in Denver! It’s in his right frontal lobe and so far no voluntary movement in his left arm & leg. He was transfered to rehab on Wed and honestly seems to be getting worse which I didn’t anticipate!
He has been a bit more alert, but really has barely eaten anything for over a week. Today when I came in I brought one of his treats of fries & a whopper from BK and he wouldn’t eat it. He then suddenly lost all ability to form words and was mumbling nonsense and sounds. He has been talking fine since the stroke. And now seems a bit better than a few hours ago. He can start sentences or answer one-two word questions but he isn’t “talking” really. And when he does it’s still kinda nonsense. He keeps saying “I have to wash some clothes.” The A-hole doctor tried to talk down to me and placate my concern by just saying “it’s the stoke” like that was obvious and I was an idiot. I don’t understand all of this to the extent I should. I don’t know how stroke works. I don’t know when I should freak out and when I shouldn’t. I’ve had NO time to do my “Shalon research” and figure it all out. All I know is that I expected him to start getting BETTER in rehab not worse!!! And it’s heartbreaking. And I’m a control freak with no answers and no doctor interested in helping me understand.
So my wonderful AVM family, help a girl out! I’m exhausted from my own surgery and haven’t had a moments rest in over a week. I’m not fully healed and am seriously at the end of my patience resevoir and the last thing I want is to be annoyed with my dad and an apparent lack of interest. I’m sure it’s the stroke and not him. I don’t have the energy to look through the forum and profiles to find info. I just need the shortcut of asking you guys to help me. I don’t know what to expect and this is harder than any of the embos I’ve done or the surgeries… Watching him suffer like this is awful.
So there is my sob story. I promise to update my own surgery and post op pics soon. Gotta take care of my daddy first!
Shalon
Shalon, I’m so very sorry with what has happened to you dad. I haven’t had a stroke so know little about them but I had a look on ‘google’ and found out stuff that you may already know, however, apparently a stroke is a ‘brain attack’ when blood supply to the brain is stopped. Your dad may have cognitive and or perceptinal problems and if so, an occupational therapist or neuropsychologist will usually test to see what changes he is experiencing. A speech therapist may be recommended - he/she will also teach the family & friends ways to communicate with you and your dad. He may have dysphasia and or aphasia which means a reduced ability to communicate using language (this is one of my problems!). I hope I haven’t scared you or told you the wrong things here as you have helped me so very much on this site, I hate to think of you suffering in this way. I can’t know what you are going through, but I hope and pray that you and your dad improve as quickly as possible. All the very best, love and prayers to you all, Lesley. (This info is from an Australian site).
Sorry to hear about your dad’s stroke. It is hard to understand why things happen the way they do. My thoughts and prayers are with you. Stay strong and keep the faith.
Shalon, you need to take a deep breath and focus on healing yourself. It’s just too soon to be stressing yourself out. This is a serious distraction, but don’t forget you just had surgery. Strokes are viscious and you really won’t know the extent of your dad’s impairment for a while. The doctor sounds like a jerk, but your dad will likely get some regular therapy at some point, and those folks tend to be a bit more compassionate. Bear in mind that the therapy will last as long as your dad shows improvement, so you will want to encourage him to get the most out of that. Take care and get some rest.
Shalon,…
I have to agree with John,…
Take a deep breath and work on healing yourself first. Your Dad is in good hands and under constant care. So please work on your healing from your most recent surgery. In the meantime,…read up on strokes and their related effects,…then,…go back to the A-hole Dr. and confront him with your questions and demand that he treat you with respect without his condescending attitude.
(Information is knowledge,…knowledge is power)
Shalon,…I am behind you 100%,…but please,…heal yourself first,…then go RHKA.
Your friend,…
William
Oh Shalon,
I’m so sorry to hear about your dad’s stroke and all the while trying to help him during a time you need to be focusing on your recovery. My heart goes out to you both!
Following my 3rd crani my mom also had a stroke, so I can relate. She had aphasia and couldn’t express herself right and was in the hospital for about 1 week. Since she lives 200 miles from us and I was in no condition to be away from home, the best I could do was advocate on her behalf to her doctors by phone, ask questions and get a little pushy with her need for therapies, etc.
Since she lives in an independant retirement housing affiliated w/assisted living facilities, she was able to stay @ the assisted living unit until she was capable of living independantly again.
Is there a stroke support group where either of you live who you could contact? That may also be helpful.
Best wishes to you and your family,
Patti
OK control freak and type A person,the only thing that you can control right now is taking care of yourself; so focus on that as much as you can. Your Dad will recover, the odds are your strenth comes partly from him! If he’ in rehab, he probably gets tired sometimes and it affected his speech. I was like that when I first started rehab…exhausted. Hang in there, he will benefit of your beautiful smile!
Hey everyone, thanks so much for the messages.
Today IS better. And Gisele I think you are absolutely right. He is talking again today like normal. Yesterday was his second day with such a “busy” schedule and so much stimulation. He probably was just over tired. But it was so odd, unexpected, and frightening. And I just needed a normal and somewhat nice doc to say “That happens often, don’t be alarmed.” I’m sure I still would have freaked out (Type A for sure!) but at least I wouldn’t have been SOOOO worried.
We’ve been here since about 9:00 and went to PT with him. It was good to see him doing well, and working hard. He totally did everything the ladies asked, AND of course he was back to talking and cognitively aware. I was very pleased.
I bought chocolates for the staff. The nurses and all the therapists really are great. It’s just the one doc that pissed me off and really…he’s JUST going to be on my shit list for a while. I’ve already decided to hold a grudge and there is no going back! I don’t do it often, and it’s deserved. So there! 
Still can’t get him to eat much. He says it makes him feel sick. I forced him to eat a little (seriously little) at lunch but settled for him at least drinking an ensure.
And yes, I know I need to take care of me. I do know. But of course I’m a “bounce backer” and always do well after treatments. I really am feeling very good post surgery and am just a bit tired. Got a good sleep last night and am relaxing here with my dad today. This weekend should allow a little time to recharge the batteries. I “promise” not to over do it… Hubby won’t really let me anyways. Or well he tries not to let me. And yes, I realize I don’t take my own advice, that I’m a hypocrit, and that I push myself too hard. What are you gonna do though? Right? I’m my fathers daughter so I’m hoping he has just as much drive to get well as I do
Thanks again for all the notes from all of you. I love knowing that when I need to, I can come here and get a big giant cyber hug from all of my AVM family. This really is the best support group and the best group of caring people in the entire world. What would we do without each other???
xoxo
Hi Shalon, I will pray for you and your Father, I feel bad this happend to your Father, Been there with ignorant Dr’s before, not in my husbands case but my own…sometime I will share, but right now it’s about you and your Dad and you both getting well, God Bless you both!
Hi Shalon, I’m so sorry to hear of your Dad’s stroke. I can’t help very much as I have not had any personal experience with stroke. I did however find this web site for you & it’s a pretty easy read. http://www.amhrt.org/presenter.jhtml?identifier=4761
I hope it is useful. Must say I agree with all the other comments. Please take good care of you! Get plenty of rest & sleep. Your body needs time to recover well, you have been through so much yourself. And as for that Dr. just avoid him, so you don’t feel stressed. You’ll propably find the support staff more helpful & friendly. My thoughts & very best wishes are with you & your Dad. Take Care
Sweet Shalon…Hang in there and please try to rest as much as you can from your own surgery. I will pray for you and your Dad!
Dear Shalon, sorry to hear about your Dad, my girlfriends mom had a stroke in her frontal lobe and her speech was affected, over time it got much better I am also a rehab nurse so from a professional standpoint know that he will continue to make progress over years to come. Your brain is amazing and can reroute as the need be. Hopefully he has made some progress. I am sorry that you are dealing with so much at once. Also if you visited your Dad in the evening he may of been tired and then the speech can get be worse. Know that he will continue to get better, I will keep you and your family in my thoughts and prayers. Any questions don’t hesitate to ask, rehab is my specialty. Diane
Hi Sharon, We can take pain and sickness ourselves, but when it is our loved ones, it is harder to take. My experience with stroke was its as though someone put your brain in a washing machine and spin cycle. It feels bruised and battered, 13 years ago I couldn’t put 2 words together, if you turned me around twice, I didn’t know where I was. I only had partial weakness (still suffer what I call “weak” days) it is a long road, but as you know its the people around you, your family and friends that make the difference. So Sharon my advice to you is to look after number 1, the rest will follow. funny saying but its true.
Take care
AmandaJ
Hi Sharlon, Hope you and your dad are doing better now. Have you read “My Stoke of insight” What your dad just went through reminded me of what the author went through but in a much worse way by the sounds. She recovered marvelously. a couple of us recommended it in AVM Books and Movies
Shalon, you make me laugh in spite of the seriousness of the situation. I can totally see you going ape shi* crazy on the A-hole doctor one day. I do that myself sometimes when I’m frustrated. Know that your dad is exhausted! Rehab was the single hardest thing I’ve ever had to endure in my life. For me it was 5-6 hours of physical, speech, and occupational therapy every day (except Sundays). It really is brutal for someone who has just experienced a trauma to their brain. But…it helps! Your dad will get better but it will take time and patience. Just be there like you have been. But you won’t be any good to him if you don’t take care of yourself and you know that already. So be well! I do have a question though…do you know what caused your dad’s stroke? Since it was a bleed and not a blockage type of stroke I wondered what caused the bleed??
I kinda know what you are going through shalon, my father is in the same boat. He had his avm rupture on march 15th 2010. Ever since then it has been a long and hard struggle to get him to where he is right now, which isn’t that far actually. It’s pretty much exactly what everyone else is saying, he is going to sleep A LOT for the first few months. He is going to have good days followed by sometimes one, two or three bad days. I used to be the most impatient person and I still am but this whole process has made me patient. It is extremely hard and there are going to be tears and moments of despair but when you hear him tell you that he loves you or shakes your hand that all goes away. It really is amazing how the small stuff will do so much. So hang in there and stay positive its going to be a long road but you guys will get down it.
patience, patience, patience!! It won’t get better all at once, but will get better in itty, bitty steps and nothing you can do will make it go faster, just be there and be supportive. Do read “My Stroke of Insight” by Dr Jill Taylor, as recommended by Brett and remember to take care of yourself, too!!! I’m sure your dad is feeling very badly that his brain had to go and have this silly stroke when you were trying to recuperate after your own surgery. He’s still in there he just is going to need some time to swim back to the surface!!!
Oh Shalon, I hate that you and your family are having to go through this now, please know thoughts, prayers and love sent your way! I’m sure it will get better with time!
Blessings!
Marie
Hey guys- thanks again to all the new people who have replied. And I will def ck out that book. Also, does anyone know who posted something once about a “stroke ck list?” I swear it was just within the last month and there was something he was looking at online to tick mark progress maybe…
So Dad is doing better in general. Still obviously not good, but better. Yesterday he even decided he wanted to sit up for a while. He’s been spending most of the time laying down for a couple reasons- he gets dizzy and his head hurts which they have said is probably all from the swelling, and also his good leg has a pulled hamstring that is driving him INSANE! So he is super irritable and can’t get comfy no matter what. Poor guy. But he also was totally up for my suggestion to get in his wheelchair (a huge task on it’s own) and head outside for a little fresh air and sunshine! Love it!
I made him a sign to hang in his room that reads-
“You have a choice! You can throw in the towel, OR you can use it to wipe the sweat off your face!” I think it was the motivation to get up and go outside. As a long time track official, he is so used to being around athletes and that entire mindset. I hope he keeps it. Also, I set up a Caring Brindge site for him so that he can get encouraging messages from his friends. If any of you bleed survivors want to leave him a note letting him know you are doing ok after being where he is, I think it would be awesome! www.caringbridge.org/visit/bobhughey
Still trying to just get my head on straight. I wish I had about 20 more hours in a day. I need to find out more about the possibility of depression and motivation issues due to the right frontal lobe area. Also, I think he is having involuntary muscle spasms and such in his good leg. Anyone else have this? Anything to help?
I know this is going to be a long road. I’m not at all in denial about that having read so many of your stories and struggles to get “well.” But I’m 100% certain my mom is kidding herself in many ways. And it’s hard to take care of my mom on top of my dad without ending up being mean to her. She is a loving, totally 50’s stereotype housewife mom, who was great growing up. But she’s flighty and incapable of understanding and retaining some of the medical mumbo jumbo. For those of you who have watched The Golden Girls…my mom is Rose…literally!
And I’ve made myself a bit of a pest at the hospital. In a nice way of course, but I’m sorry that I’m a hospital expert having been every month for the last three years. I know what I can expect, what I should expect, and what isn’t acceptable. They just don’t get away with anything from me and I don’t intend to let them just to “be nice.” That’s what chocolate is for. That’s what my “Pre-apology” thank you card was for…those times when I WILL be mean in the future
And Trish- it’s something called CAA- Cerebral Amyloid Angiopathy. Sometype of protein we all have but some people just have “more” of it. They don’t know why and there really isn’t anything that can be done. It can cause the walls to crack and then bleed. So it’s a different cause than an AVM, but really SOOOO very much like one in what it does, the damage it can cause, and that there is not much that can be done for it. It just “is.” How crazy is it that I have an AVM and my dad happens to have this? We always say that this crap isn’t really hereditary, and I do beleive that is true for most of us. But still…makes you wonder when there is something so similar or something else “wrong” with a family member. Ya know???
LOVE you all! I’m hoping to catch up and post about me soon. In the meantime, you can at least go look at my super cool surgery pictures slideshow. Grody for sure, but totally fascinating! Warning though- seriously don’t watch if you get grossed out easily!
xoxo
A hemorrhagic stroke (the stroke that occurs when the blood vessel ruptures) REALLY impairs a person. The deficiencies he’ll experience depends on the location of his brain bleed (and any areas that were ‘exposed’ to the blood that ruptured). I had a hemorrhagic stroke when my brain AVM ruptured and I can honestly tell you that I now know what it truly means to be ‘trapped in your own body’… it is the most horrible thing because the person is still ‘there’ inside all of the ‘silence’/unability to communicate. DON’T give up on your dad!!! Fight for him now so that he can fight for himself later on!!! This type of stroke is one hellacious emotional rollercoaster but know that he DOES appreciate ALL the things done to help him get through this. As far as eating/his appetite, again it may have a lot to do with where the bleed occurred in his brain (as different locations effect different functions); however, it is ESSENTIAL that he gets the proper nutrition now and after his hospital release, as it will help his recovery. My suggestion would be: (1) if he doesn’t want to or feel like eating, have the hospital feed him through a tube (so he gets the proper nutrition his body so desperately needs right now) and (2) check with the hospital ‘higher-ups’ or other doctors (whom you feel confident in) and change his doctor IF the current physican isn’t providing the level of care your dad needs. As far as yourself, make sure you are getting rest too because remember: you can’t be of any help to anyone else if you are not taking care of yourself first. Please update us when you can. Take care of yourself for you and your dad!