I just checked Kyle's facebook group and there were no new posts. I guess that Mr. Kyle must be all tuckered out after a weekend of storytelling with his friends.
I just checked Kyle's site on FaceBook and found a post by Mama J. (Darlene)
Darlene Jay wrote
at 6:17pm
Kyle had another good day today. He continues to feel better each day. Thanks to Justin,Elizabeth,Kyle and Jamie for all stories and making Kyle laugh. He had a good weekend.
So there you go all rested up, feeling good and ready for another week of hard work getting his body back to work again.
All the best Kyle keep up that "can do" style. It looks cool on you.
Also on a personal note I just finished posting the three video clips (7 minutes) each from the Stroke Awareness TV interview that I was invited to do in February 08.
Welcome back. I just checked and found that Kyle's mom Darlene had posted the news for today on his group.
Here is her post.
Darlene Jay wrote
at 8:54pm
hey there everyone, Kyle had another awesome day pushed himself too far and now his body is very tired and muscles are toning. He again typed on his computer. Walked to the hallwalk in the lite gait. He even wanted to listen to his voice on his phone voice mail today and then laughed. This has been Kyle's best week yet and he has shown what he is fighting for and that is too get his body back. Have a great night.
Thanks everyone for following these daily posts and you can encourage Kyle if you add a reply as I have posted a link back to this blog from Kyle's FaceBook group and invited everyone there to come check us out.
Kyle had yet another good day. He is feeling good and continuing to blow everyone away here. Today with the lite gate which is the machine he stands with Kyle could bend his legs like trying to sit on the edge of the bed then bring his body straight to a standing position. He done this 4 times. Then with the help of physio pushing his legs he went from the bed to the hall this is a little ways but he was hell bent he was getting there. We have had a wonderful day and he is very proud of himself as we are even prouder. Mr. Kyle can take care of himself and put up a fight when he knows something isn't right, like the nurse trying to take his blood and not use the central line which she is to. Instead tried to use a needle and he would not let her so she had to get a nurse and she was told she had to use the central line.
Take Care
The Jays
It was posted by Brenda Horseman. Now I haven't met Brenda and she didn't identify herself in the post so I have to assume that she is a family member. I am sure that it will be made clear in the very near future but the news is that it was a good news day from the J Room.
Now here is Darlene's (mama J) post
Darlene Jay wrote
at 9:52pm
Hello to everyone, it is late tonight as I could not get this thing to work tonight. You all have read Brenda's update but I wanted to show you all what kyle did today on his computer.
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This is all Kyle! He had a great day!
the amazing news is that Kyle typed on the computer. It' not hard to tell where this boy is headed. In the words of Smokey an the Bandit. "He's got a long way to go and a short time to get there, but you just watch ole Bandit RUN..." or words to that effect... lol
I checked for posts today and here is Darlene's post from earlier today.
Darlene Jay wrote
at 5:22pm
hey everyone.Kyle had another good day. Feeds working no sickness, he does continue to try corking and this is a challenge for him as gags him. He still makes movements. Today up in the litegate where it allows him to stand. With the help of the phyio guys moving his legs he made it to the doorway. Then the legs toned and too hard to bend. He had lots of smiles today and even put his hat on when out for a walk so we all know he must be feeling better cause didn't want to wear his hat in the past month. Hope for a good day again tomorrow.
My personal note for today: I met Kyle's Grand Dad today at our local Tim Horton's. (coffee shop) He introduced himself to me and told me that he had seen Kyle last weekend and that he is good mentally and his memory is intact so those are both good things. He also talked about Kyle's fighting attitude and his wanting to get back into life with his friends and family. He also mentioned that Kyle had gotten encouraging messages from distant places which I took to be emails from stroke buddies by posts and emails.
He also said that Dr. Shawn Jennings (Stroke Network Member) has been in contact with Kyle.
This is all very encouraging and the stuff that recovery is made of.
I just checked for posts on Kyle's FaceBook site and this one was posted by Darlene earlier this evening.
Darlene Jay wrote
at 6:25pm
hey everyone. Kyle had a great day today not sick. He had more shoulder movement, trunk movement where with his back supported he could bring his body forward, leg movement also with his legs supported he managed to lift his bum off the bed not very high but he did it. He is fighting like hell to make every movement he can. He is completely wiped out this evening, been sleeping 2 hrs now but getting ready for his show Deadiest Catch at 10. PEI is still on hold for abit as not ready to come home yet. Hopefully soon.
Yep every journey begins with a single step. Way To Go Kyle!!!
I just checked on FaceBook and Kyle's Mom (Darlene) posted twice yesterday.
Here are her posts.
Darlene Jay wrote
at 2:26pm
Hello everyone, Kyle is having a good day today no sickness, lots of smiles and laughing today. Even managed to pick his nose today and laugh. He tried corking today and went 4.5 hrs then blew the cork off. This is his first try since last Tues as he was so sick. He told us the other day he was going to be better in a year. This tells us he is going to fight like hell to get through this. take care
Darlene Jay wrote
at 4:29pm
Just got back from OT and Mr. Kyle has shoulder movement this is the first that they noticed this. He was pretty happy to hear this and know he was doing it. Even in the right shoulder which is his weak side.
That sounds much more encouraging. Smiles, laughter and some new movement. (That would appear that he is getting movement back) Add to that a fighting spirit and we could have a winner....GO KYLE!!!
Here is the latest that Kyle's mom (Darlene) posted on his FaceBook group. (about two hours ago)
Darlene Jay wrote
at 5:28pm
hey everyone. Kyle is feeling a bit better, he continues to get sick but not near as much as the past couple of days. He was up in wheelchair today first time since Wed. He mouthed the word movie to me today and i could make it out, this is a big step for him. Also gave someone the finger today and laughed. He is very tired and sleeping alot today hopefully tomorrow will be a better day. Mama Jay
Thanks for your support (emails and posts) for Kyle.
I just checked his FaceBook group and his mom (Darlene) had posted twice this week on how things are going. Here are copies of the two posts and a link to the group.
Darlene Jay wrote
at 9:32pm yesterday
hello to you all. Well PEI is not going to happen as soon as we thought a bit of a delay. Kyle has had a couple of rough days with being sick, we don't know if a delayed reaction after the stroke that he is now getting sick often this is common in brain stem stroke victims. Kyle has a problem with secretions in the back of his throat and this makes him gag which makes him get sick. This is going to be a long road for Kyle that is going to take time. So in time we will get home but unfortunately not as soon as we thought. Kyle has come a long way in 9 weeks and hopefully in 9 months he will have made huge improvements. Keep on praying. Love Mama Jay
Darlene Jay wrote
at 6:44pm
hi everyone, Kyle is having a really tough time right now as the sickness continues. Us along with Drs are not sure what is going on but Kyle is frustrated as hell. Just wondering if anyone might have any DVD's of the Deadliest Catch that we might be able to borrow this is his fav show and soon will be done of his TPB's (Trailer Park Boys...Editors note)videos. Mama Jay
It sounds like Kyle could all of the help that he can get.
I know that you will keep him in your thoughts and prayers. An encouraging post or email would be great too.
A young man (18) Named Kyle Jay from our community here on Prince Edward Island suffered a Brainstem stroke in March and has been in hospital in Halifax ever since.
His family is with him, his friends have created a group on Facebook and his community and workmate have been organizing various fund raising events and acts of kindness to help out.
I wrote an email to Kyle and his family asking that I could let the online stroke community know about him so that fellow survivors and caregivers could encourage both Kyle and his family by posting encouraging messages or sending emails of encouragement to Kyle and his family.
My email
Hi
My name is Gary and this message is for Kyle and his family
Garth, Darlene, Kurt and Kyle I first heard about your stroke from a neighbor lady shortly after it happened. I was also contacted by the the Heart and Stroke Foundation of PEI asking if I knew of any way to give support to you during this very difficult time. Mainly why I was contacted was because I also suffered a stroke on August 10, 2002 while standing at the counter at Tim Horton's in Montague would you believe. Click here to visit my home page and read about my experience.
During a home care visit this morning my Home Care Worker mentioned the article on you (Kyle) in last week's Graphic. I tracked down a copy and made a photocopy of the article. While reading the article I found the Facebook group that Kyle's friends had started and since I am a member of Facebook I joined the group. I was able to view the awesome video that is featured there and read the posts on how Kyle has been making such great progress (thus this email address)....... Way to Go Kyle!!!
I was thinking about you Kyle and your family and friends, about how this whole experience must seem so frightening trying to make sense of what has happened and how to cope with the present and future. I thought of what it was like for me and where I found the answers that I needed to put my life back together again. For me it was an online stroke support group that I found about a year after my stroke. I met many other stroke survivors men and women of all ages who were also looking for answers. I am still a member of the group and continue to check in as often as I can. The fellow that organized the group is a brain stem stroke survivor and there are other members that are also brain stem stroke survivors. I fact one member is Dr Shawn Jennings a brain stem stroke survivor who resides in New Brunswick. Shawn may have already been in contact with you as he had emailed me that he was aware of your stroke and that you were in hospital in Halifax.
I do need to bring this email to a conclusion so as not to tire you out. (I understand the fatigue that comes with having had a stroke)
I just wanted to introduce myself to you and let you know that you are a member of a growing number of stroke survivors both here on Prince Edward Island and around the world. Recovery is possible and we never give up hope. It's a long road with lots and lots of hard work but there is life after stroke don't ever let anyone tell you different. You have many friends in the stroke community and they will be true friends that will stick by you.
I would like to share your story with the online stroke community so that they can contribute to the encouragement that you all need at this time. If that is ok with you, could you please let me know be reply email.
I look forward to your continued progress toward your new future and your new normal. I have a little saying that I like to share with my stroke buddies. "The more that we care, the more we share...."
Wishing you a continued and positive recovery.
Smiles
Gary
Kyles's reply
Hello Gary:
Sorry it took so long but the days go bye very fast now it seems. Kyle is doing ok but an off day today. Bowels are now too loose so they are watching this plus dreary day and we all know that he will have days of being mad at the world as we do. He hasn't been corked today and that is ok that will come in time. We got word that we are going to be going back to PEI on Monday or Tues and this will be good for all of us. He will still have his trach but that is ok it will be good for him to start his rehab. We do appreciate you emailing us and look forward to one day meeting you we hope. I read all his emails to him as he cannot work the computer yet and still has some double vision. He is making great strides in such a short amount of time and much more than we thought so far. The Drs. are amazed at how far he has come and not even in rehab yet. Gary did you have a trach? Kyle is on so much meds right now and I hope in time he will be weened from some but I know that he needs his meds right now. Thank you again for emailing us and when he can get online for sure he will be part of the stroke gang.
Take Care
The Jay Family
So the favor that I am asking is this:
If you are so inclined could you post or email a message of encouragement to Kyle and his family?
Click here for Email address:
Click Here for the Face book group:
Thanks! and remember the more that we share means the more that we care...
Well I have been wandering around the globe and having such fun. (virtually of course) This can easily be accomplished through the use of the internet that is now referred to as Net 2.0 (social networking)
I have been introduced to http://www.facebook.com Over 60,000,000 accounts have been set up and people are finding long lost friends from years ago. Even lost family members turn up. There is way too much to FaceBook to even begin to explain it here. If you haven't set up your account yet go do it and invite me to be your FaceBook Friend. Thanks
Next is Twitter at http://www.twitter.com now to help you understand what Twitter is here is a Youtube video
You can follow me on Twitter at http://www.twitter.com/garydotgray
So Social Networking has the potential to do great things. Here is another video that you can watch to get an understanding of social networking.
Well that should be enough for this time but please if you use the social side of the net make me your friend. Thanks
Remember The more that we care means the more that we share.
Thought I had better post my first blg post for 2008. I hope everyone had a safe and happy holiday. (wherever you are and whatever you observe)
I also wanted to let Clark Taylor know that I did find his reply on my last post....Thanks Clark. I am so happy to know that you are doing well.
I really havn't made a lot of plans for 2008 but the Consumer Electronics Show starts today in Las Vegas so I guess I will be keeping an eye on that over the next four days.
I watched Bill Gates keynote address last night to open the show. Not a bad presentation but nothing stellar.
He said that the first digital decade was a success and we are now poised to enter the second digital decade.
PC's, internet, telephone, t.v., movies, music and mobile tech are all converging as the infrastructure gains more and more capacity and speed.
All of the medias are converting to digital and are beginning to use the internet as the delivery vehicle of choice.
It most likely will be very interesting as it unfolds over the next months and years.
Well I am finnaly back from summer... What a summer it has been. August was a very full month as I was involved in the Thirty Day Challenge 2007 and that was way busy. Then September was some more TDC 07 and a pile of volunteer work. October was taken up with another new Kingdom Hall construction project and getting ready to give a presentation at the Provincial Heart and Stroke Conference Nov 01st to 03rd. Also I was asked to attend an extensive environmental course Nov 05th to 8th in Halifax Nova Scotia....Whew...
So now I am able to get some R&R (I hope)
The Heart and Stroke people have asked if I could participate in a sesson later in November to give feedback on the Stroke Conference.
Other than that I hope toto step back to a little less hetic pace going forward.
Thanks Sue for the invite to get back to blogging. I will try to be a bit more regular in future.
I got Steve's email just as I was about to create a blogger blog and just had to make this post due to the urgency of Steve's article. Of course one way to help Steve is to hug, love and vote for the blog so that it gets a higher ranking in the search engines and more people will read his article.
This is called social bookmarking and not everyone here might be familiar with those terms. If they sound like Greek to you just check with the teenager in your family that is always on the computer.
Thanks everyone for your support. (just another way to help Steve get his message out)
Just came by to check in as I noticed that I had been neglecting this site again.
I don't know if I told you all (y'all) that I have been confirmed to speak to our provincial conference on stroke on the 1st of November comming. This is the same coference that Dr. Jennings spoke at in 2005.
I am working on an outline and a power point presentation to be approved by the organizing committee.
I have also started two courses (one on Internet marketing 2.0 and one on gaining better focus in your life in the three areas of goals, wealth (not just money) and health. That should keep me busy till at least the end of August.
I can feel my body responding in a positive way with more energy. Makes me want to do more and I find that I am actually able to do a little more. (what a great feeling)
So I may appear as though I am missing in action but I will never be very far away. If you need to get in touch just IM me through Strokenet.
Oh and btw the little image seems to have disapeared on my signature. The page that it was on has gone down and I hadn't made a backup copy and stored it on my computer nor did I upload a copy to my online image file. (dummy)
Any how I guess I can leave it to see if the page comes back online. So if you see just the little square with an X in it on my signature that is why.
Talk later and hope everyone has a great summer. (mid 80,s and sunshine here in Prince Edward Island with a gentle breeze comming in off the ocean... Ideal summertime vacation weather)
I have a friend arriving tomorrow from Mexico for a short visit. (hope the weather stays nice)
I just dropped in to check on stuff and I think I am totaly lost. Nothing looks familiar to me. I am not sure if this is part of an upgrade or just a freaky twist in the digital weather but I find it very confusing.
I realize that it is a bit belated but Ross I was saddened to learn of Diane's death. Thank you for keeping us updated. I never really had the chance to meet and get to know her but I have read some of her posts and the many comments on her last blog post. My thoughts will be with you and your family on the 27th.
I am not very spry this week as I was away for the weekend and will be paying the price (fatigue) this week.
Here's hoping that we get back to some familiar territory soon as this skin just don't cut it for me.
I am sorry if I missed some reason why we have this different skin.
Please feel free to help me to understand the benefits of this new look and/or any other comments are always welcome.
Just wanted to let everyone know that the PEI Heart & Stroke newsletter is online in PDF format.
You can download it by going to that site (just google stroke pei) and look for the download link part way down the page.
I am not including a link here as there is a donation request in the newsletter and it is not in keeping with Strokenet policy to link to other sites of that nature. (I think)
But...If you google Stroke PEI and go to the PEI Heart & Stroke foundation site I am sure that you will find the download link
btw the Tour de PEI just came by and boy are those women fast. (if you blinked you would miss the whole pack)
Fred I was looking for you and Lance but I must have missed you guys.
There are pictures being posted in the www.tourdepei.com website under the news tab.
I will be away to New Brunswick this weekend for a mini vacation so see you all again next week. (the weather is suposed to be nice all weekend...in the 70s and 80s F)
Well today I got the final draft of the PEI Heart & Stroke newsletter for June in my email. Joan (the lady that edits the newsletter) asked me to review my experience and let her know if there are to be any last minute changes.
So that being done I emailed her back along with a couple of questions.
1) Will the newsletter be available online?
2) Where can hard copies of the newsletter be obtained?
So I will keep you posted.
One other small peice of news: I have been invited to record a two minute radio public awareness radio spot for to be aired during June being Stroke month here in PEI.
I will update you all as to how that goes as events unfold.
Just began reading the June issue of the Strokenet Newsletter and Lin you have done a great job as per usual. (you deserve a great deal of thanks for your continued dedication and commitment to having this great publication out on time EVERY month.
I was going to email Steve to thank him and congratulate him on Strokenet being recognised as a source of stroke support but I decided to make it a blog post instead.
Steve you were ahead of your time with this concept and your vision, hard work and dedication has provided one of the best stroke support communities available on the net....THANKS!
Now I understand that it possibly would not have happened without the support of a great deal of people such as your wife, family and all of the Strokenet volunteers.
Stroke survivors and caregivers alike have and do continue to come to this site to receive information and support that they just can't find elsewhere.
I have been a member of your site since 03 (one year post stroke) and I have appreciated the support I have been given by other members here.
Some of those members have moved on to other things and I have also not been around as much over the past year. I guess that is part of the healing process and life. (something to be thankful for)
I still stay in touch with most of the survivors that I have met here and continue to meet new ones as the find their way here.
I know from your posts and messages that you do not have an easy ride and I wish that was not the case.
I wish that there was no need to have a Strokenet site, that stroke didn't ever exist and that everyone who has had to deal with the effects of stroke didn't.
But in a real world we do have strokes and have to deal with the after effects of them. Then like a sunny day after months of overcast skies and rain Strokenet comes shining into our lives.
Thank you everyone for all of your efforts to make it that way. Thank you everyone for just being there and thank you Steve for your vision that is slightly ahead of it's time.
I feel that this site justly deserves the recomendation that has been given it.
Why the strange Blog Entry Title? Well It is just that that song has been playing over and over in my head for the past hour or so. The more I thought about it the more that it seemed to serve as a metaphor of our lives as stroke survivors.
I think the words go something like this. We all live in a yellow submarine. We all live in a yellow submarine.
In the town where I was born, there lived a man who's name was Green, and he lived beneath the waves, in a yellow submarine.
Well don't we all live in our own submarine of disability beneath the waves of the sea of mankind where most everyone seems to live a "normal" life.
Sometimes our little submarine goes up and sometimes it goes down. We can just never seem to quite manage to break the surface so that we could throw open the hatch and breath deeply the fresh air of total recovery.
Thank you Steve and crew for this fine communications net. (Strokenet) It has been and continues to be the tool of choice for us sub bound survivors to communicate with and encourage each other.
Great Newsletter again this month Lyn. (thanks for all of your hard work to put it together every month)
I know that Steve has struggled within his submarine this past year. We are very happy that it is still put putin along and my what a lot of work has been accomplished over the year.
Something that has occured to me recently is storage of digital personal health records on the net and can it be done securely. With an online storage system and a hard copy on a tag on the person (possibly engraved) url (web address and password), critical data could be accessed fron anywhere. It would also serve as a backup to paper, film or magnetic media based records such as the ones destroyed during Katrina.
I guess what I am thinking is would Strokenet consider such a service for members if it proved to be of value and doable?
That is a retorical question and there is no need for an answer just food for thought.
I would like to pass on to Gunther aka G "Smurf" in Winterpeg my warmest wishes for a speedy recovery and continued good health. My best to you buddy! You will have to get Heather to get out her monkey wrench and tweek that submarine of yours a little. LOL
So that's my rant for now. (hope that will do Asha)I am going to dock my sub on the bottom for the night and hopefully it will be ready to sail (put put) a little farther tomorrow.
My very best to ALL of my stroke buddies here at Strokenet.
If you can't surface (fully recover) at least up periscope (keep a positive attitude) so that we can at least see what is going on in the real world.
Thanks for the welcome. There are some familiar voices in this wilderness after all. It is great to hear from all my stroke buddies.
The entry title is "The Stroke Song" and here is a link to a stroke awareness site.
Click here to hear "The Stroke Song"
Now a word of CAUTION if you are linking to the site to provide support to the organization then DO NOT USE THIS LINK.
The reason is that giving support to another organization should NOT be done through Strokenet.
That said you can listen to the song, Download it to your computer and/or mp3 if you like. You can even introduce it to your local radio station. Make sure that every one you know hears the words to this life saving song.
I feel like I have been away forever..... Do you know what I mean?
When I checked my last blog post date it was early July.
And Wow the site is soooo different. (like being lost in the woods) Well I thought I had better check in but I am not sure who I am checking in with. Most of the old familiar names are no longer here and there are so many new ones.
Steve's newsletter article mentioned that we have passed the 5000 mark. And like he said it is nice to see the site grow but not so great to know that so many new stroke survivors are being generated.
Well My summer has been busy and my sister will be heading back to Vancouver next Saturday.
We had a great visit and saw lots of relatives, friends and such while she was/is here.
Boy do I have a time trying to keep up to her (70) and my 90 year old uncle. LOL
He golfs every day and beats guys 30 years his junior. (good on him)
Well I have to head off to bed and get caught up on some sleep. I just read the September Newsletter (great job Lin) and thought I would pop in to say a quick hello.