jriva

Boy, Kristen, I can see why you are so angry!!!! It makes me angry, too, and I don't even know your aunt. It makes me angry that interns (and doctors) keep saying these things about "Reflex actions, not planned movements, merely responding to a voice" when any of us who've dealt with aphasia know that isn't true for everyone, if in fact it's true for anyone!

I will continue to help that your dad can get your aunt to give up the power of attorney since she seems so "over-whelmed" with it all.

:friends: Jean

What a cool blog from you!! Roller blading always looks like so much fun. I hope you are proud of yourself for having the courage to do this again...dog doo and all.

Jean

Yup, a blog is a combination of two words 'web' and 'log' if I remember my "Idiot's Guide to Creating Web Pages and Blogs" correctly.

Aside from a name in common we have other things in common, Betty Jean. My husband's stroke hit him at age 58, too, and I was 57. This was in May of 2000. His was massive but on the left side, leaving him right side paralyzed and without speech. I also didn't have time to grieve my dad before this happened. After the stroke I had to sell two houses and two businesses, have two auctions, move to a wheelchair accessible apartment before finally building a house.

I knew that feeling well of going through the motions as if I was a robot with my emotions all bottled up. Losing your sources of income, insurance worries, cash flow problems and not knowing what will happen in the future is enough to make anyone want to become a split personality. We are in a much better and happier place now with the joy back in our lives again. With luck, you will eventually get there too. Just keep writing. It really does help to let out all those emotions in an environment , like here in the blogs, where people understand.

Jean

Beautiful, truthful and wise blog entry, Ann. That live-in-moment philosophy---although you call it something different---makes it so much easier to find the blessings in life and an uneventful week is a blessing.

Jean

You go, Diane! Great letter. We need to let our politicians know what is going on in the real world.

Glad you like your new therapist.

Jean

Wow, that's an intense class and way to learn a second language. I'd go buggers trying to do that. Enjoy the warm weather down there!

Jean

That's great news about the adoption. I can't imagine living four years without knowing if you were going to have to return a child or not.

Jean

"Speaking in front of the patient as if he/she can't hear is insensitive and boorish. " --- Sue, when the two neurologists told us that Don would be a vegetable for life they did it at his bedside with him fully awake to hear it. I think that is one reason why it's always the first thing he wants to tell people he meets. Kristen, make waves in the family for doing this. It's worth it! So many people---including doctors---think if you can't talk you can't hear or understand and that's not necessary true.

Jean

I agree, Fred. This is awesome! I'll add it's also deep, thought provoking and lovely writing. Thanks for getting Asha off my back about writing a "Sunday Mediation" today in our blog community. I wish you had made the Lin's deadline. I would have liked to read the whole article intact.

Jean

Sue,

I'm sorry to hear this news, but as your title says, it could have been worse. So it sounds like you've got something to be grateful for along with the tragedy of yet another set back. As we say around here, "It's hell growing old, but the alternative is worse." I will keep you both in my thoughts.

Jean

Kristen,

I'm so sorry to hear about your grandmother! God, with all you've been through you'd think the family would draw strength and encouragement from you and not listen to the negative medical community! My thoughts are with you....

Jean

This blog entry kept a warm smile on my face the whole read through ---well, a few sad parts, but not many. You guys have come such a long way and are finding ways to adapt and compromise. I'm sure you'll work out the challenges still ahead of you. Your New Year's Eve story is a happy tear jerker.

Has Denny ever tried one of those little (and very cheap) talking devices that they sell for taking notes, and acts as a key chain or flashlight? Don has one that I had his nephew record a message on (male voice). It says "My name is Don and I have a language disorder. I can't say many words but I can understand everything you are saying. Thanks for understanding and for only asking questions that have yes or no answers." He has another one that can be used on the telephone to get emergency help to the house. THEY work great but Don is stubborn and much prefers to try to talk, But depending on the personality of the person, some aphasics love these things. You just keep the message there for playbacks and don't ever erase it.

Your blog should be a real inspiration to others, just like Asha's old/new post thread. That pedi-cab bike idea sure was a creative thing for Denny to come up. I'm sure he'll come up with something else that will work out. Who knows---though---maybe the tourists would tip even better if they knew Denny is disabled.

:friends: Jean

Wow! What a device. I used to be the map reader on trips and would get us there with no trouble but to drive and read a map at the same time doesn't work. I can see where the GPS can take the fear of of traveling with Don again. Thanks for the explanation.

Jean

What I'd like to know about GPS devices is do they take you right through inter cities if that happens to be the shortest way? Do they take into consideration things like high traffic areas like around airports and places like Disneyland and take you around stuff most people would avoid? And what if there is construction and you can't go the way it says to go?

I got a map routing from off Google recently and it was suppose to be the quickest way---what a mess of back roads and twists and turns! Great way to get lost. The routing they did for the shortest way was so direct and clean cut, I don't know why anyone would go the other.

Jean

Good for you, Sue. I think sometimes we get so over whelmed that we forget that planning when into things we wanted to do pre-stroke in the same way it does post-stroke. Maybe a little more planning now but we don't have to give up everything. Sunsets are free.

Jean

Welcome to the blog community. Don't worry about being ' boring' or 'entertaining' or any of those things. That's not what blogging is all about. Oh, and keeping stuff in draft the first time a person blogs is such a common thing that it's part of Asha's job to look for that situation. You are not alone.

Looking forward to reading more about the ups and downs of your life.

Jean

Me, Asha. I bookmarked the site and already found a few places that I already knew about.

Jean

bob,

I'm jealous that you've been doing the project I keep putting on my New Year's Resolution list each year. What kind of special software or equipment do you need to scan slides to a computer? Is it an expensive venture? I think it's great that you're sharing the pictures with your sister. Family history should be shared with as many as possible so that some copies might survive when someone down the road takes an interest again.

Don used to be a pretty good photographer before his stroke but most of his work is on slides. Our projector got accidentally put in one of our auctions when we downsized.

Jean

Although his dominant side is the left, we force him to use his right.

Sorry I misunderstood the above sentence to mean he was left handed. My mistake. You're going to have a great day, with news like your wife just gave you. :cheer:

Jean

Hi Zain,

Thanks for the update! I'm impressed with how far Farhaan has come, given the severity of his stroke. The swallowing improvement in itself is HUGE. Glad you found him water therapy.

As for the speech...your son is already ahead of where my husband was at this point out from the stroke. He only had a one word vocabulary the first six months (yes) and it took many more months to add 'no.' Just the fact that he can write small sentences is an important factor to build real communication on down the road. A lot people with speech issues don't like using the communication board. My husband was one of them. While it may have helped me if he had used it, it frustrated him...he preferred to keep trying to get the words out. And in hindsight I don't think that was a bad thing for him to do. Everyone is different, trust your instincts.

I understand that people who were left-handed like your son can get back more speech than right handers. I take it his left hand is on his paralyzed side and that's why you're forcing him to use his right side? I'm left handed and I spend a semester in grade school having a teacher try to force me to use my right hand. Worse semester in my life so I sympathize with your son on that front.

We'll be thinking of you and your whole family.

Jean

Sue,

I'm glad you wrote this. I think it's a good thing to remember the ties that bind couples together and your essay has helped us all to know the Ray that you do. Your last line shocked my because as I was reading it 'eulogy' did pass through my mind. I agree, let's celebrate his life now, while it really matters.

Jean

Lorraine,

I second Sue's 'thank you' for joining the blog community. A lot of us know about adult strokes but few of us know much about strokes in children. Even so we all go through the same emotional ups and downs. So stick around. For me, the on-line support we get here is even better than my local, in person support group. Candor and true feelings have a way of coming out more in an anonymous setting, I think.

Jean

AJ,

I read the blog entry knowing that you've got lots of reasons to look forward to a great year ahead. Turning the acceptance corner, finding a therapist you like and everything else put together will all add up.

Don't worry about that wife of yours handling all the changes. Just keep calling her "awesome chick"---no woman could resist that, especially when I get the impression that you really mean it.

The funeral of Ford is just five minutes away from me. He had a big impact on Michigan through the years. I hope something happens that we can get back to a kinder, gentler brand of politics again like in his era, but I'm not holding my breath.

Jean

Hi Susan,

Wow, an eleven year anniversary! I sure hope Don makes it that far. The blog community should be interesting this month as everyone updates their blog. Glad to see yours!

Jean

Hi Azella

You made it to the blog world! That's a great accomplishment in itself. I hope you start writing about your ups and downs once in a while now. It's really good therapy and you'll get a lot of understanding ears, some some good advice too.

Jean