swilkinson

Stessie, it is so good to read your lovely sunny post. I admire you so much for the way you live your life with such zest. You are truly a survivor in all senses of the word. I echo Anne's words - surround yourself with family and friends and all who love you. Enjoy life to the fullest of your ability and enjoy your summer and the beauty around you. Sue.

Debbie life is never going to be perfect but as long as it is do-able you will manage just fine. I am glad you have found the last few months a learning expereince and are now in a better place. It is the most we can do - find acceptance. Sue.

That was waaaay more complicated than you expected Sheryl. Glad you are back home, I hope all the news from now on is good. (((Hugs))) from Sue.

Did you miss me? Ray and I have been away at Camp Breakaway at the

What an interesting couple of days, my birthday, my graduation and a meeting of WAGS. We seem to have been too busy on the meeting dates to attend WAGS meetings for the past three months so it was nice to catch up with the folks at our Stroke Support group. It was a pity we couldn

Dean, in a lot of cases it is the caregiver rather than the survivor who does the research, enforces the change of lifestyle, encourages the exercising etc, Exercising is paramount as it is that repititious routine that enables the brain to make new pathways for old processes. A lot of caregivers are wives and as most Aussie husbands suffer from wife deafness it is that obstructive behaviour that can negate recovery. Or that is my expereince anyway. I agree we have an animal body so obviously renewing structures is what is required but we have emotional, social and psychological needs too so support groups, the health professionals and mental health specialists are needed to help in the process. If we go back to where we were we will end up back at the stroke event again further down the track. I know a lot of what the future is about will be due to brain cell replacement therapy too. A needle full of nice compatible brain cells that will "fill in" the dead brain area is part of my vision and maybe in the future we will keep brain cell banks so we will actually be using our own cells after strokes, heart attacks etc. Sue.

Debbie, take it easy. You did not over-do his exercise program etc, you used the window of opportunity as best you could to help his recovery. Tell unhelpful friends to butt out unless they want to take over for a week or two while you go to Vegas or the resort of your choice! Any suggestion that any of this is your fault is bunkum. Mostly no-one is at fault, we are just all doing this for the first time with no formal training and no-one mapping out a program for us to follow. You are a good wife and caregiver, you are concerned andloving and left your own career etc behind and have concentrated your energies on Bruce. Bravo! I tell Ray: "50% of this life is mine" so 50% of the time he has to do what I want him to do. Then I let him sit on the verandah or on his favourite chair and do his word puzzles( he is not a tv watcher) or go to bed or whatever. I always say we share one life now as neither of us has a life of our own. Stroke survival past a certain point is like that for those who genuinely do need a caregiver. Joined at the hip is how Ray and I live. Watching our lovely intelligent, handsome, efficient, hard-working men turn into an invalid, a slowly recovering stroke survivor or just someone who takes to their beds is unfortunately part of the post-stroke journey for many of us. I visit a nursing home where people as young as Ray and with less deficits are permanent residents. I tell Ray it is because their primary caregiver could not do the things I do every day for him. And I believe that to be true. Ask Bruce's doctor is there some medication for the insomnia, ask the pharmacist, the PT, OT etc the same question and someone will come up with an answer or a routine or a process that will help. Keep your own routine calm and get as much sleep as you can. You are precious as part of our caring community and we don't want you breaking down too. Sue.

Fred, thank you for bringing some realities of the Texan way of life to us. From my view point across the Pacific life is very different from what you experience but we share the same values. To honour the dead is good, to remind ourselves of the sacrifice they made is good too. Anzac Day and Remembrance Day reminds us of the same values. We do not have big war cemetaries like you do. Most soldiers who die in conflict are buried among family graves. It is more comforting to have our dead among us. Thank you for your own observations that you share with us. I may never come to Texas myself but I will always remember I have a good friend called Fred fwho lives in Fort Hood whose words I am often touched by. Sue.

Ruth, this sounds so like me in 2001 two years after Ray's major strokes when he finally started to get over all the trauma and wanted to improve. Long may it last for you and William. Yes, do plan that holiday. We had six wonderful holidays traveling with a seniors group so that starts were later, days shorter and we did enjoy what we saw and travelled as we had longed to. In 2007 suddenly they were no longer possible as Ray took far too long to wake up and get dressed but we have all those beautiful memories. Now when we see photos of so many places in Australia we can say - been there, done that. Sue.

Fred, I feel the same way on our ANZAC Day. Too many sacrifices, so many young lives lost. Sue.

Goals? they tend to be a bit like "New Years Resolutions" in our house, a great idea but not likely to last for long. See you in chat. Sue.

Jeannie, we have missed you. Please keep on blogging and keep us up-to-date with what is going on in your life. (((Hugs))) from Sue.

Winter is coming, fast now as officially it starts here on 1st of June. So traveling 150 miles further south meant it was wetter, colder and windier and I so missed the warm weather that we enjoyed when visiting our daughter and family when she lived in Cairns, 1700 miles north and SO much warmer in winter. But I enjoyed visiting her and her family for a week even if the weather was less than co-operative. What did I do? I showed off my skills as a sales woman on the Trash and Treasure stall at their church market day on the first Saturday I was there, far outselling the amount raised by the first one. I enjoyed walking the kids to school of a morning and hearing them thunder up the stairs of an afternoon and hearing what they did at school each day. I went to the school and saw the movie of the country camping trip my grandson had been on the previous week, he is shy and was always only just visible up the back of the group. We are proud of him anyway. I enjoyed walking with Shirley or her husband with their two dogs and the grandchildren just on dusk. I had promised a friend I would go for a walk every day and I did except for two days when the wet, windy weather got to me and I thought it was not worth the effort. And on a couple of mornings when the sun was out I sat out on their front verandah and knitted while their cat pretended my wool ball was a mouse and made a mess of it. Just sitting and doing nothing is a novelty now. We went out to dinner twice and had fun doing that, it was really nice to just eat without having to cut up a meal first. I love my daughter and her kids and know that the only thing I can give them is my time, not as often as I would like to for sure but realistically maybe twice a year with Ray and another twice by myself. Without Ray as a distraction I can give everyone else more attention and as a family we do need some

Hey! Katrina. What makes you think we, your Aunties on Strokenet, will not be interested in you any more? We all have our own worries I guess which sometimes means we don't post right away but we do remember your struggles and think of you and wonder how you are doing and what you are thinking about. Be proud young lady of what you have achieved. Your disability has not been allowed to drag you down, you have done well and made us all very proud. We have been your cheersquad so turn up your volume and hear us cheering now! I think you are a marvellous young woman and have great potential for the future. I hope your internship has shown you that you can function in the "real world" and you have so much life experience to bring to anything you do. And you are beautiful as well. So cheer up, get out in the world and enjoy your life. Your life is a gift, as you say you could have been like those bed-bound patients you have seen in the hospital and yes, maybe they could do with some cheering up too. Maybe when you are not too busy you could go back and have some conversation with a few of them? You've got the experience, tell them how good their future could be. We all get a lot back when we give a lot. I hope you post more frequently so we know what one of our favourite people is doing in life. (((Hugs))) from Sue.

Wow, on lots of fronts. Good effort - well done for Bruce, walking alone without the bars. Good effort - well done for you taking him out at weekends, somewhere interesting, somewhere stimulating, somewhere with a history (Ray and I have seen the Bounty too, many years ago). Sad about the elderly couple and the murder/suicide, shame on the family for not seeing what was going on and doing something before it was too late. Hope Stroke Awareness month brings some attention to stroke survivors and their carers, there is usually a lunch sometime in the month, never been to one as it is always Wednesday ( Tuesday night your time). Talk to you on Tuesday night. Sue.

Wow, this just blew me away. What an incredible family! What a great acceptance of reality. Fantastic that they all lined up so that Bruce could have this re-entry into something he loves so much. I am very impressed and would fly over there at great expense just to hug them all if I could. Not to mention WELL DONE YOU MARVELLOUS WOMAN!!!! Sue.

Ray and I went to the neurologist this afternoon, he goes every six months. The neurologist said his patient number is 1061 and the practice is now up to 21000 so he has been seeing him for a long time. In fact he has been going there since the 1990 stroke with a break of a few years before the 1999 ones and every six months since. We got there twenty minutes early, which was great as we saw a familiar couple walking out, and it was one of Ray

It is hard sometimes when you are looking for answers and the reply seems to be:

Hurray for both of you. Ray and I did a couple of years in the heated pool one day a week. One day he just said: "I've had enough " so we stopped, I thought for a few weeks. Then the pool changed hands and charges doubled so we didn't go back. But it was good for both of us while it lasted. The deeper water gives you more buoyancy so it is easier to do strokes and also feel as if you have more movement. Debbie, there is a lot of progress being made now, I can tell that from your blogs. The "back to work"news is good too Debbie, I didn't go back as for a couple of years I was looking after my mum as well as Ray and being a caregiver for two was enough. By the time I had her in care Ray had had stroke number four and was even less mobile than after the first three strokes and I would have had to hire a full-time carer to replace me. Life goes on and hopefully you will see a lot of improvement over your summer. (((Hugs))) from Sue.

It's not about you It's not about me It is about the team! Sue.

I went out alone today for the last learning day of my theological course. It was the first time in ages I had been away from Ray for more than three hours. It is over an hour

Janine, I used to say "life goes on" but now I know it just moves forward. It is closer to eleven years for me, actually April 19th was eleven years for Ray, my caring role anniversary is September 3rd. I'm glad you got some outside caretakers in place so you could have some time off and time away from the caring role, good for you. I understand the "does not want to get better" thing. Ray doesn't either, and does not realise that when you stop trying to get better it is a gentle slide backwards. It is true we need to make the most of what we have...this IS our life...no-one else's and we need to make the most of it. You are a very sensible woman and a very brave one too. As Stephanie says, we adapt as we go along. (((Hugs))) from Sue.

This morning we had a sky my Mum used to call