kkholt

Hi Hpoirier, You've got a "new you" to get to know. Be easy and gentle, look for the things you like in the new you and focus on them. It's hard not to look back at what you lost, but honestly it isn't very productive to stay there long. Appreciate that you are alive - and what you have, it could be worse. It was the toughest time in my life, ever, grieving for a person who hadn't died. The practice of talking about or writting about my feelings that seemed so ugly and uncomfortable, really seemed to make them easier to deal with and eventually go away. Take Care! -Karen

Hi Betty Jean, It's good you found the site. It is also good the Doctors are interested in the cause of your husbands stroke - to me that is a good sign. We had Doctors who initially weren't interested in finding the cause of my husbands stroke - which was frustrating. Like yours my husband was young when he had his stroke (47) last August. It is important you take care of yourself - so you can be a support for your husband. I didn't stay the night at the hospital like some caregivers. To ensure I got a good night sleep I left usually by 10:00 PM and was back by 8:00 - 8:30 for the first ten days or so. My sister started a little notebook for us - phone numbers, names.... Another resource is your nurse. The evening one usually has more time to spend talking to you, and they can often spend the time to explain things. Take care Betty Jean - check back often. Wander through blogs and posts, there is a lot of good information on this site. -Karen

http://www.aachc.org/memberslist.html Ellen - Check this site out to find a clinic close to you. They provide care for un and under-insured people, including medications at a reduced fee. There are LOTS of mental health medications, keep trying till you find one that works and you can afford. -Karen

Greetings for Labor Day weekend. We've had some fun company off and on over the past couple weeks. Couple of friends that have work to do in the area are camped in our yard. It has been a lot of fun having them here. Week or so ago, they took some time off work and went moose hunting. Rob went one day, and declined the second day, said he was too busy. I do know that one long physical day can really knock the wind out of him. So after the guys didn't come back - by noon. I told Rob they were either taking care of a moose, or sitting in a bar drinking somewhere. The good news was they got a moose. The next morning Rob, the friends, our son and a friend of his went out to finish packing the moose out. I love it that these friends are so patient with Rob's rehabilitation, and getting back into the woods.

Kristen, I gave up caring about our house decor, a long, long, time ago. Rob being an artist, has very definite ideas about what he wants to live around. He made fun of me years ago, about me buying a piece of art in a waterbed store before we started dating.... He never lets me forget that. Our house has a very masculine decor with hunting trophies on the walls, lots of animal parts, bones, skulls, bird parts..... He loves these things around him.... I could care less. It's not a battle I'm going to take on. One time in an effort to assert my feminity, for our bed, I purchased sheets with pink flowers and a matching comforter.... needless to say, it just didn't feel right, and has since been replaced. I think the couples that get along best in these situations are the ones, where one just doesn't care..... Good luck Kristen -- -Karen

The local women in the club - are serious, avid readers. They likely see some of us as ones who wouldn't take things as seriously as they do, and thus, no invitation. I'm looking forward to selection day!

I've been thinking about the prospect of - the strokenet book club. It is actually consuming more of my thoughts, than I am going to guess it may consume the thoughts of others. This is why. I live in a very small community - much smaller than Haines (the town that #2 on the book club list is written about). It is a community, of good people. We are known to come to the aid of any local community member in time of need, regardless of ones politics. We are a community known for hundreds of miles around, to be a community with loud and strong opinions. One more thing about our community that most don't know, is we have an exclusive book club. A book club who can only be attended by those who have been worthy of invitation. A club that caused a dear friend and I to have cross words about - she supported the exclusivity and I did not. I've lived in this community for 18 years - and have not been invited to book club. As a matter of fact when I told somebody I was going to attend years ago, I was told that wasn't an option. My best friend and I have bonded in our exclusion of this club. She also has been told she cannot attend. We are a bit mischievous and even put a radio announcement out - one time that stated the book to read this month was "Captain Underpants". The announcement was pulled by a book club member when she realized the announcement was a spoof. That caused a stir which we slying smiled at. I've never belonged to a book club, so I don't know what to expect - but I'm looking forward to the opportunity to find out.

Since Jean posted my blog in the community forum - I'll give better details of what we did with Rob's constraint therapy. It's important to know that Rob is not right handed, so being forced to use an affected hand, that is not dominate was especially difficult for him. He started by having a cast put on his left arm on a Monday - see the pictures in the Gallary that I posted to see how they casted him. He had the cast on for five days. We found the best way to measure improvement was in his ability to feed himself. The first day of having a cast he had to drink through a straw, and he could only eat with his fingers. Getting food onto his fork was almost impossible. By the end of the first five day session, he was drinking without a straw and he was able to get food onto his fork, and into his mouth. He had his cast off for two days, and put back on again the following Monday. This time the cast was on for a week and his improvement was noticeable at a faster rate. By Thursday he was getting his coffee cup to his mouth a lot easier (see the picture in the gallery) and eating a lot faster. I'm not sure how much difference it made, but his attitude and frustration got worse the longer he had the cast on. He is a busy guy, and really needs to get things done. He couldn't stand being slowed down with the cast. I is my opinion, that he did very well. If I had it my way, he would have gone to therapy while having his cast on so that his OT could have worked closely with him, getting him to use some of those muscles that still are having a hard time "waking up". As it was, he did good, using the muscles he could, and the improvements were from sheer determination often to just get the food in his mouth. I asked Rob what he thought about this therapy. "I think it made a difference" he told me. He also noticed that after his cast was off, he found himself reaching for things with his right arm. He said he felt that this kind of therapy helps to reverse the effects of learned non-use. He added that even though the therapy was extremely frustrating, that two weeks was about the minimum and shortest time you would want to do it. I'm hoping the negative aspect of this experience will be like childbirth and he will forget the pain, and would like to see in the middle of winter, if he will be willing to go through this again.

We're done with constraint therapy for a bit. Rob was suppose to have his cast removed Tuesday - and just couldn't wait. He took it off himself on Monday. I can't really get it out of him how he managed to get it off. He said he used a grinder (which I know he has several of different sizes). That may be a story I never know. Every day he had his cast on, he improved with his right arm, and his attitude got worse. By Sunday I had never in 26 years of hanging out with him, ever saw him that grumpy. Owee he was miserable. During his CT I saw improvement in his right arm - I just don't know if the improvement was enough for him to sacrifice his limited mobility. He has moved through his rehab like a D-8 Cat - and learned to do so much with one arm and hand. So much that his left arm looks like popeye's leaving the right arm far behind. Putting a cast on his left arm pushed him right off his D-8, and he didn't take it well. I look forward to hearing what his OT says when she measures his progress tomorrow.

Rob got his cast on yesterday afternoon. His elbow is in about a 45 degree angle and he has full use of his hand. We ended the day sitting on the porch, laughing, having a drink and going to bed early. Day two, and I'm so impressed with how well he does with this cast. He can get dressed, brush his teeth, and tie his shoes. Eating is the hardest activity. We decided on pizza tonight - it took about an hour and a half to eat three pieces. He sent his OT an email and told her he was all better - and asked if he could take the cast off

Hi AJ, It would be great if you shared with us some of the tools you and AC come up with to help you. Rob and I were chuckling the other day, we determined since his stroke it is very hard for him to make appointments at all, much less make them on time. He has to work really hard at that. I'd love to see the tools you use that will help with cognitive issues. -Karen

AJ, Did your son get a Macbook? I just bought one for my son.... they are very nice, and now I wish that is what I had bought for myself unstead of an ibook. -Karen

AJ - your blog was so funny I had to read it out loud to my husband! Thanks for the laughs. -Karen

Rob has some good movement in his arm/hand. He can open and close his fingers, and move his arm up high enough to touch the top of his head. This is done using a lot of his shoulder muscles and also very slow and not very controlled. He has been using his right hand as a tool quite a bit lately, such as holding his bowl of cereal while standing and eating. He just has to really "think" about even considering using it. The plan is to limit the range of motion in his elbow on his unaffected arm, allowing him access to use his hand and fingers. I understand it will be inconvenient for him to use the left arm, and in doing so it will encourage use of his right (hopefully). Being left handed, he is at a disadvantage to even "wanting" to use his right arm/hand. He will probably be spending so much time doing basic things... that he shouldn't get into too much emergency type trouble. We tried the oven mitt, and it didn't work. He just pulled it off. We're both very much interested in this therapy, and it was us who brought it up to our OT as something we want to try. I say "we" as all you caregivers know when he is imobilized, it will be increasing the amount of help he needs...... He isn't getting his cast on for a few days - and I'll let you all know how it goes.

Rob was evaluated Friday to establish a baseline to measure the affects of constraint therapy. Next week (probably Wednesday) he will have his left arm/hand casted. I think we are both a bit anxious.

Rob and I were have a conversation the other morning - and he warned me (teasingly) that if I was mean to him, he would tell my strokenet buddies. And then he said, that well you would all stick up for me. I assured him that if my strokenet buddies ever got wind I was remotely mean to him, that you'all would take me to task for that. He is a protected species.

I just read a post by vanillamoon - and it gave me a reminder of why I'm here and how valuable this site is. She described a stroke (she as survivor) as "an earthquake in her head". I can relate to that analogy, being from Alaska and experiencing more earthquakes than I can count over the past 40+ years (including the 9.2 in 1964). Her description really got my attention, and gave me shivers - it was just a little wake up call and reminder of how it must be for my husband. Being able to consider how things are "on the other side of the fence" really is important for a successful survivor and caregiver relationship. Thanks for the analagy VM, it is truly appreciated. Now I have to go give my husband a hug and tell him how important he is to me......

I'm feeling my personal life is stabilizing. One of the more interesting aspects that I've noticed is although Rob and I have a strong relationship, and are going through this rehab and adapting together physically, we go at different paces emotionally. The other day when we were talking I felt that it is just now occuring to Rob that no matter how better he gets, and although there may be no visible effects to other people, his body will likely always feel different. Another interesting area was in his response to constraint therapy - and he was concerned that I thought if he went through it, then I would think his stroke would be gone. It made me realize I am much farther at accepting our new lives, and the positive aspects, then he thinks I am. I want him to get better and if he doesn't I'm very much okay with how things are today.

Phyllis, Try logging into the site with a different browser. For example if you normally use internet explorer, try going in with netscape (or for mac users try netscape if you normally use safari).... just a thought. This sometimes helps me - there are certain sites that I've noticed sometimes don't like it when I go in with netscape. -Karen

Hi AJ - I checked out your daughters site. I don't know her, but the site has an artistic creative feel -- interesting. So, when you mentioned that you are on the phone with her and don't know what to say -- you could ask her about what she is doing, ask her opinions on things -- if she will open up about this stuff. Figure out what she really likes to talk about and keep the conversation there. My son, when he started Junior High stopped talking as openly to his Dad and I. What I found interesting is he and his Dad can now sit at the table and talk for hours about societal politics, world war history -- things I know nothing about. If I ask how his day was.... he clams up. Sometimes I was a little insecure about talking to my Dad, and was concerned he was going to have an opinion about what the decisions I made, and what I was doing. For some reason kids are very sensitive to parents comments and sometimes view them as criticism, regardless of the intent. As I got older and became more confident with years those insecurities lessened. Take Care! -Karen

Vicky, Freedom! Way to go. -Karen

Mary, The hospital case manager encouraged us to apply for social security almost immediately upon Rob's admission. If she hadn't and we didn't do it at that time, I doubt if we would have done it later. Rob's application went through and he qualified without question. Rob definitely associates his SS with defeat - and no matter that I explain it is simply early medicare retirement - he still doesn't like it. -Karen

Sue, Sounds like you had a great time visiting with your daughter and her family - a well appreciated break. Little kids can be so rejuvenating to the soul. -Karen