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  • A  blog is a personal journal of your daily life as a stroke survivor or stroke caregiver.  Surprisingly, countless members have called it therapeautic to write down their thoughts and to vent their frustrations.  You can make it private, just for your eyes or public and share your personal thoughts with your friends.  Why not try it, create your blog and start writing and see if it helps you.  


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  • swilkinson

    Living on angel time.

    By swilkinson

    I went to see the neurosurgeon on Tuesday. I was interviewed by a young Asian associate doctor and sent for a 3D MRI and angiogram, a brand new way of showing  the blood supply within the brain. The results were given to me by the associate and then I saw the specialist. It appears the aneurysm is larger and deeper than previously thought but at my age they are not going to operate as it would mean a full brain surgery. Coiling, one method of dealing with an aneurysm, is not an option. I think I was a little bit shocked by the news but taking into consideration I have had the melanoma op, the lymph node dissection etc I am not really a good candidate for another operation, especially brain surgery.   The specialist was fairly brutal because I think  he wanted me to know if I wanted an operation it had to be after I got a clearance from the melanoma specialist and that would take time. He said he knew I had a long wait ahead of me but not to worry.  Not to worry!!! So back to basics, no stress, no strenuous exercise, no * blush, sounds like no fun at all. So what can I do? As usual make some decisions, live a quiet life, let the future take care of itself, one day at a time. Hell's bells, what else is new?   So I have a plan. I have to just go on the way I always have, going about my usual routine one day at a time. Whenever I start to worry I will visualise that little bubble about the same size as the tiny diamond on my engagement ring. I will visualise a tiny angel sitting alongside the aneurysm, with her thumb firmly on top of it holding it in place. I know one day it may be that she will take her thumb off and the pressure will build up and life as I know is it will be no more. But It will happen to us all one day, in one form or another.   I went to Dissection Clinic down in Sydney today and there have been no changes in the past three months to the Lymphoedema, which is good news. In the interview I told her I had regained my confidence in walking down stairs which had taken a year to do and had recently started yoga again. She seemed pleased with the progress. No more interviews in any of the Sydney specialists rooms until next February. Hurray! I have survived twelve months since the melanoma was removed and six months since the operation to remove the lymph nodes. I have a lot to be thankful for.   My daughter took me to both appointments, I was so glad she had the time. We stopped for lunch today before we left Sydney and although it was expensive it was a happy time and one we rarely enjoy together. She also got the news today that the position she holds as Captain of the Cardiff Corps has been extended for another twelve months which is good news for me. If she had been moved it might have been a lot further away. Her husband's appointment has also been extended. Though he will now have a wider area to cover, which means a lot more time on the road. But she said he can cope with that.   On a less happy note my special friend who has the leukemia has now been in hospital for eight weeks and he now seems to be getting much weaker. I have been a regular visitor and it is painful to see the deterioration. With all the people  I  have ministered to in hospital you would think I would get used to seeing that happen but I never do. I am always an optimist, thinking with the right treatment, an adjustment to their medication etc they will be fine. But that is not always the case. So maybe there is more bad news to come.   There are signs of Spring now, birds building nests, green grass after a little rain, even some blossoms on the prunus trees in the parks we passed today. Hopefully the nights will warm up and we can start packing away the winter clothes. I have no plans, the future is a blank canvas. Don't think there is much fun and excitement ahead but who can tell? If I wake up breathing and moderately energetic I will endeavour to have a good day.    

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  1. I haven’t contributed to the strokeboard in a loooonnnnggggg time, but OneHandCan.com is still here.  I’ve been dealing with horrific, debilitating back pain for months and am now facing major back surgery sometime before year’s end.  My days usually go something like this...bed...recliner...bed...kitchen...recliner...bed... yes, KITCHEN!  That’s what’s keeping me going.  I love to cook and, although I have to rest numerous times in the middle of cooking a meal, using my One Hand CanDo Cutting Board allows me to continue to do what I have always found pleasure in doing, cooking and eating good food.  Can anyone relate?


    Check out onehandcan.com and share your thoughts and experience with cooking post stroke.

  2. It's funny how we never stop worrying about our kids, even though they have their own separate lives and have not lived under our roof in years.   Our oldest son had his back problems and underwent surgery back in December, went through a painful rehab process and we worried that he would end up on disability as it took a long time for him to be able to even walk without a walker.  He wasn't sure he would be able to go back to work again, especially since his employer at the time was moving out of state and he'd have to look for another job.   It's not easy switching jobs once you turn 50 and have had health issues, but he lucked out and got a really good job.   He's been training in Chicago and is now back home in Colorado while his wife is going through some serious health issues.   She just underwent surgery on Friday after a routine colonoscopy revealed a malignant tumor.   She's doing well after surgery but won't have results of latest biopsy till next week some time.  If anyone can beat it, it would be her - - she's a tough cookie, but that doesn't mean we don't worry about her and our son.   His new boss gave him the time off to be home with her  through the surgery and some of the recovery, but I'm sure he'll have to head back to Chicago to finish his training.    I'm feeling like I should be there to help out, but can't even make the trip to Colorado unless I have someone along to help with Gary - between a rock and hard place on that one!    Our caregiver, Carmen was going to be away to CA for 3-4 weeks, and now it's going on more like 5 weeks and she's not coming back until around the 20th, which means I will have gone nearly six weeks without help...........ugh!!



  3. I read our Sarahs reply on her latest blog. Vicious cycle she said. Perfect wording for our lives. I to, although have come so far - feel that vicious cycle . I get up go to work, go for lunch go get Dan from the nursing home. Usually have to fix something - his glasses , pick something up off floor or figure out who he is mad at and why. Its kinda routine thing for Dan to always want or need someone to jump. But I don't dwell on it like I used to. 

    Then we leave the home, go through Mc Donalds to get his daily meal ( the only thing he will eat). We then drive to the house so Dan can eat his meal while I run in and check on the cat and the house , pick up mail -- etc. 

    Then him and I go to my work - he goes and sits in the bathroom for like 1/2 hour . Comes out stamps the envelopes of the mailing my boss and I completed in the morning . Then he scans old legal files for about 3-4 hours. Then to the bathroom for another 1/2 hour ( the more I hurry him the slower he goes). Then we leave work. Then I'm faced with - nothing - nothing to do - of course there IS something to do , but we've done it all so many times before. Go out and eat, go see grandchild ( who incidentally usually is never home cause he is a busy boy)- lol. I could and do take Dan to the house... Unload wheel chair , walk him in - maneuver the steps -- try not to let the cat out , crap! there goes the cat-- lol

    Back to the bathroom - out- watch TV ( right now when weather is nice , we sit on the patio ) then Dan wants to sweep the patio. Go get the broom , sweep up and dump the stuff Dan swept up.... Then we head over to Mc Donalds - Dan gets his meal and I take him back to the home... 

    At the home I wash up his torso, underarms , groin etc. lotion him .. Put clean shirt on him, then he sits in the bathroom for- I'm told- sometimes- hours. After the washup is done, I leave -- it's usually like 7pm then. 

    So sometimes I'll go have a martini and the only bar in town that can make one - or I'll go home and make my own. Then I graze from the fridge -- lol--- thankfully now with the weather being nice I'll sit out on the patio water the plants and watch the cat.. In the winter I just go to bed and watch TV. 

    Im not sure if Im content or complaining at the time I am writing this - lol---- I guess both. I like the fact we have established a livable routine for the most part. But the pure predictability of it all--- grrr and the waiting and always looking for the next thing that dan needs, a kleenex? another bathroom break-- oh pick that up ? it bugs you..... ??

    So it is a vicious cycle ------- I guess its the responsibility of it all. Its hard -- I miss being able to just go- no thought of last time he has used the bathroom, what has he eaten, should I expect a mess? Fitting the chair in the car, remembering the cane--I have managed to overcome a lot , So I imagine this to shall pass-- lol . 


    Actually Dan has a new desire on the horizon ---- Gambling has raised its ugly head..... He wants to go to the casino ( 2 hours away ) a lot--- So Im trying to keep that little addiction from running and ruining our lives.... He has always liked slots a little , but right now - he would live there . Funny - the mans in a wheelchair , can't hardly talk but still gets his way-- But not always- He is playing with the" no eat card" - if I don't take him. HMMMMM we'll see how this plays out.

  4. If no news was good news life would be so wonderful. I have paperwork in for both operations in two different Sydney hospitals now with a pre-admission interview on the 11th for the aneurysm clipping operation. I know you all know the importance of this operation as it will save me having a stroke, at least that is the way I am choosing to look at it. With a good surgeon and a lot of prayers it should be fine. I am not looking forward to it but I am no longer afraid of it.


    We have just had the first really cold days for the start of winter, record snowfalls for  May in some of our little towns near the Southern Alps. It is time to turn out the cupboards and find the winter woollies. I might need to get out scarves and gloves too if yesterday was anything to go by. I will probably need to look out bedsocks and shawls to wear during my convalescence. Not counting on anything at the moment as  I will find out more details at the next couple of meetings. Anyway no harm in getting ready for  whatever the future holds.


    I am not as active since my last hospitalisation for the infection in my affected leg, it seems like my lymphoedema increased in my affected leg so that seems more log-like than before. I am also conscious that I walk differently now swinging my left leg more slowly than my right and I am doing shorter distances too. It is  nuisance more than anything but does affect my confidence. I find stairs are a challenge too and I am mostly walking down them sideways with my back to the rails. A bit awkward but hey! I am still on my feet and that is the main thing.


    Apart from that there is still a lot to enjoy in my life, morning tea or lunch out with various members of my widow friends groups, church meetings, craft, Lions and other activities. I like a variety of things to do and mostly enjoy some activity each day. I am more tired than I used to be, after 2.30pm I find myself wanting to head for home or find somewhere to sit with my legs propped up. This has been coming on slowly but I certainly know the difference that losing the lymph nodes made to my  overall health and wellbeing. I have finally got rid of the chest infection, had it for almost four weeks. I am sleeping better now.


    The short days means I try to fit gardening in after lunch. There is not a lot to do except keeping things tidy but with no rain for four weeks I have been watering a couple of hours each week. I had three different chrysanthemums flower just before Mother's Day which was a surprise.  Shirley and family came down for Mother's  Day lunch and and brought me another chrysanthemum which can be potted up once the flowering is over. I also have five different bromiliads in bloom so that was a beautiful surprise too. I have always enjoyed pottering in the garden. The herbs are finished though, I will renew them in Spring.


    I am not sure how the next few months will go, Trev would love me to go out to Broken Hill to stay with him for a week as I usually  do at this time, last year I was there for my birthday, but I can't go anywhere right now. I am glad Ray can't see me like this. I still "see" him here in my mind's eye. Funny how that happens for a long time after they have gone. Those 44 years were the major part of my life. Despite my efforts to live a full and satisfying life the loneliness is still a major factor. No way to overcome that.


    So that is my whinge for today. Not exactly a pity party, just a blog about the uncertainty of my present life.


  5. SassyBetsy
    Latest Entry

     ! I can't believe this April already! And I can't believe how long it's been since I've done a Blog. So much has happened all of your prayers have helped the miracle that has happened in my life. I was on antibiotics IV plus pills well the ivy was 10 days the pills was like a month and still I had fluid weeping out of my legs. Now I have a lymphedema condition they say and they said just elevate your legs and keep it on this diaper here so that all this fluid doesn't keep getting all over the bed and just stay here in the bed. Well that didn't work well for me because I'm a Nancy person and I like to pop up and look around and sit up straight and I just didn't believe that being in the bed for the rest of my life was going to help things. So then they sent me out to the hospital to have my legs looked at they said well you need to go to the wound clinic at the medical center and get a dressing on this. So I went back to my nursing home and they said well you don't have to go there we can get the wound doctor to come see you and the treatment nurse will come and do her thing. And the doctor is going to come see you. Well between those three fools I managed to have these cauliflower looking gross up and down my calves that were infected painful and all I could do is just sit in the chair I couldn't really get out and do anything. So I was very lonely. And it's nice to know that my good friend that I always go visit he said you used to come visit me all the time what happened don't you feel good. Well he's blind so he can't see that my legs are all wrapped up like a mummy. Because when I finally got my wits about me and got scared enough I decided I'm in too much pain not to go do this so I went to the wound clinic. The doctor there just said I can fix this but I can't prevent it from happening again unless you will elevate your legs and keep these bandages on. So I did and it wasn't easy because you see one of my legs is that crazy stroke-like with CPS and to have it bound up with tight elastic binding was more than I thought I would be able to bear and yet I did it and they did use a really soft cotton ecloud kind of bandaged. Was just fabulous and I would not have been able to do it without it but the people here said that I made them out to be a fool. Well if the shoe fits put it on. So the wound doctor came to see me the day before yesterday and I just laughed him out the door and I said no I don't want to see this doctor and he looks so shocked like you've been kicked in the knees and he said oh you don't want to see me and I said there's no need I'm Healed I'm all healed up and he's like oh oh well if you ever change your mind and I said you're still not listening to me I said I am cured. So anyway that fool went out the door. Now I understand why so many people have their legs amputated around here. I truly am grateful to the wound clinic and my big blister on my foot got healed my leg got healed and I'm in good shape right now in fact I'm wearing circaid juxta lights which are these really cool things instead of support stockings so that's supposed to help me comply with their wishes for me to stay compressed now this swelling seems to be going on and they asked me when did it start and I said and I started taking medication. infected painful and all I could do is just sitting the chair I couldn't really get out and do anything. So I was very lonely. And it's nice to know that my good friend that I always go visit he said you used to come visit me all the time what happened don't you feel good. Well he's blind so he can't see that my legs are all wrapped up like a mummy. Because when I finally got my wits about me and got scared and of I decided I'm into much pain not to go do this so I went to the womb clinic. The doctor there just said I can fix this but I can't prevent it from happening again unless you will elevate your legs and keep these bandages on. So I did and it wasn't easy because you're see what am I like instead crazy stroke leg with CPS and to have it bound up with tight elastic binding was more than I thought I would be. You wrapped it up with really fluffy bandage over a wound dressing and then compression wrap was put over that. I had to leave it on for a week. Showering was difficult and I needed assistance and I needed my legs wrapped up in big trash bags. Not the Glam Squad. But I was so grateful to feel hot water again. So then after that I was able to do what they told me and my wound healed up great on both legs and it's kind of pink red shiny right now and I'm not sure what it's going to look like when this gets finished but I don't care about scars at all I'm just grateful to have nice skin again. And at first it was a really dried up mess but guess what my treatment right now is. Right now I'm putting Selsun Blue on my legs for 10 minutes a day and after that a good coating of Aquaphor. And then this is under my circaid juxta Lite which are instead of support stockings. There is a velcro which means I can make them more comfortable. But since the idea is to keep me wearing something I think it's just more or less the idea that in the event of I can adjust them. So in 2 weeks I will be done with all of this watching me with the blue shampoo and I don't think I'll be using it on my hair because I just watched a YouTube thing about a girl that had the purple shampoo turned her blond hair blue. So I think I'm going to avoid having blue hair although I really think that she looked cute with blue hair. So anyway right now I am really thankful that I am up walking around on two legs however my strength has been is that from me. So I went to lymphedema Clinic and the specialist there said it doesn't appear that I have any vein problem and in her honest opinion it's just a bunch of swelling that got out of hand and because the water had nothing else to do and nowhere else to go it broke free by spilling out of the pores which just made a break in the skin and then by having me just resting my legs on a diaper it was actually pickling bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed assistant and bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed assistant and I bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed assistant and I bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed assistant and I bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed assistant and bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed assistant and bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed assistant and I needed bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed assistant and I needed my legs bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed assistant and I needed my legs wrapped up in Big trash bag. Not the glam Squad. I went to the lymphedema Clinic and the special is there said it doesn't appear that I have any vein problems but that I do probably have some circulation Problems and she wants to do a 3-day rapping to see if she can get that fluid to move out of my legs. She said that by letting my legs just sit on the diaper pickling in the juice that was coming out of my legs cause even more sores. Now she advised me to elevate but also to get up do exercising like leg pumps ankle pumps and walk around because she said that the inactivity and laying in bed was causing more swelling. I just wanted to throw my arms around your neck give her the biggest hug and I just felt like I told them so I told them so! I knew nothing good was going to come from my laying around and not get up. So I broke all the rules Which is a good thing or a might be in worse shape than I am. And I needed to see people. What it did to my mental state I can't even begin to describe now I have been on so much pain medicine that I sleep a lot but I swear I've lost a couple months I can't even remember what was I doing where did the months go I was just sick I was just dealing with my legs and look it's already April. But my legs have healed and I cannot begin do you express how grateful I am to the team that help cure me and so when these people here at the home come in and say oh you made us look like a fool I just don't have any patience why aren't they happy that I avoided maybe a bone infection that would lead to something worse. oh so I forgot to say that the week after I first went to the wound clinic the nurses came to me and said I needed to get another 10-day antibiotic through the IV. now I had stayed in bed those 10 days my legs up my arm out I was not going to deal with that again and I said I just had the infection cut out of my leg nobody mentioned anything about backup Antibiotics. Then they said I had this blah blah type of infection. So the next week when I went in because I was going in weekly to get my dressings changed because they frankly didn't trust the home to do it I asked them if I needed to get a 10 day I intravenous antibiotic because the culture showed blah blah. The doctor said so it's looking good it's Halen fine and it's going to be better than expected and it doesn't look like you need to have any more poison capital L capital O capital l. well those heavy-duty antibiotics are really good when they can save your limb but I think you meant that I wasn't a candidate for that anymore. so the world Clinic was very very good for me and the home here finally got me the stuff I needed like the soap in Aquaphor and Are helping me out. though there was one problem of course there always is the girl at the desk came around and was talking about how I should have not been seen because of insurance thing blah blah blah so then I called my insurance and they said oh no you should not have been involved in that that should have been behind the scenes I said okay all right. so then the next week I was there the girl at the reception was rather rude and so I thought okay she's just busy and then something came up and I had a question for one of the nurses so I called and I asked if I could get a message to the nurse and anyway long story short the woman was really short tempered with me now I know that I don't understand things the first time I'm told anyting. but then I got to thinking about it after I hung up and I thought wow this is not doing my soul very good to be feeling like I am right now and I need to tell somebody about this. my medical group has a thing called we listen and I called them and I vented. so then I got a phone call from the office manager at the wound clinic and she apologized said she thought it was just a misunderstanding. well I said I do miss understand plenty but the one thing I know I never misunderstand is politeness or the lack of. so anyway I said that I did not need the lady to call and clarify anything I just wanted somebody to notice what was going on in their office because if I didn't have to return their I would not and that's a shame because the medical team is excellent. so anyway I went back the next time and they tell me that it healed really great but that they weren't discharging me yet because the doctor wanted to make sure that the swelling was it going to happen again and they want me to use this air pump that I'll be wearing twice a day and push the button and it will be compressed let eggs. so after using that for two weeks I'll go back and see them again. But in the meantime I'm waiting for the insurance stuff to go through and for the medical supply to bring it to me and teach me how to use it. I'm grateful for all the new people I've met who have helped me and for those that I've taught me 2 also be gracious but assertive. Then

     so now here it is springtime and if I feel like I hibernated through winter because of all this it seemed like one day I was running around with my shoes getting a blister because the stim trial worked out really well and then the next I was lying in the bed feet up hooked up to an IV. So much as going on and I feel like I can't even remember it all this medication makes me not remember but one thing that's been really awful is my roommate has been declining and she used to be so Lively but they put her on something for anxiety. she doesn't eat very much anymore she doesn't want to eat and her voice is like a whisper now she just keeps getting weaker and softer my best friend and I talk all the time and she said you've got to stop getting involved with people there at the home because they are so much older than you sicker than you and a lot of them are going to die before you. so one of the main problems right now is that I add to cancel my surgery and so that means that I'm not going to be getting the electrode put in and I'm not even going to be getting the spinal and so not going to be getting the RFA. The nurse wants me to call in and then probably go in to see the doctor. I said I need to get completely well and make sure that this is not going to start up again so I'm not going to be scheduling the surgery but I would like to get the spinal RFA. I feel like I'm a damn down that I have cancelled the surgery that they had brought this team together and he had sought out this great program that could really change my life and that I just am now really super worn out

     disappointed what went on and I'm just not ready to schedule it I feel like I need a minute and my doctor also agreed that caution about infection I should be taken because I guess foreign bodies make good places for infection to go to. anyway I just need to get off of all of these medications that are making my mind in hibernation but on the other hand after all the pain and the ivies and all that I just feel like I need a break and I just thought to myself surgery surgery do you know what you're doing surgery! so my best friend says to me what's the matter with you you are all ready to do this you were all excited you know that this is the way to go why question now? well I have the answers to that first of all I don't like how I was treated when I was really in pain and I needed them and I'm questioning how well they're going to take care of me here then the next thing is I was thinking about what I went through and do I really want to do surgery am I prepared to go through that recovery and I guess it just all of a sudden when it was a couple days away I got cold feet first I was upset that I wasn't going to get to have the surgery and then the next thing you know I'm upset because I just needed to cancel it and and that was that so they just need to hurry up and reschedule and I've just got to get myself back in the groove so that's why the doctor wants me to come in for another consultation so the day that I went in to get my RFA the nurse does something about oh we're going to see you for the surger!


     so I said yes then she says do you know how excited Dr so-and-so is to do this surgery and I said well I'm not doing it for him and the nurse says oh I know that and then she looked at me really strange and I realized that I had just blurted it out and it didn't come out sounding very nice not like it did when I was thinking it for the first 2 seconds but there it was and I was wondering why did I say it like that do I feel pressured do I feel like if I don't get this surgery I'm letting them down do I feel like I just need to get it scheduled and just get it done already looking forward to this I need to think about how wonderful it was to be walking around and not have the pain that I have everyday not have to take all this medication and all the positives the decision had been made in fact I would be getting the surgery in April but it's not going to happen now and I just need to concentrate on one thing at a time I get very overwhelmed. I know that this is not a good thing that I've had too much time to think about it and get cold feet it was better when I just went from doing the trial to scheduling the surgery it was fresh in my mind how much it helped and now I've had time to wonder about am I doing the right thing by having the surgery and maybe I don't need the surgery maybe something else I just want to not have it just want to have some way to get out of having surgery and I don't really believe that that's the best thing for me I believe I need to get Brave and get the appointment so and I know that doctor would never I want to be coercing me and that he would want me to do what I decided was the best thing and that I need to fully believe and be on board that it's the answer for me in a realistic way of course but based on the trial there's no reason to believe that it's not going to help a little bit and a little bit will that be worth what I'm going through with all the recovery time and I'm very very scared of that and you know I I guess I am just I know I'm not alone that I have my support group here and my family and my children and hello everything's going to be good but I just really got some cold feet and decided that I needed to take a break and maybe it was just because I was so sick and that I just felt like I needed some rest and maybe this is just what I need to do right now and maybe think about it in the summer I don't know how long I can put this off because I hurt a lot and I don't know if putting it off it's a good thing because I'm not able to really walk around but anyway are you going to try to get my health back in order and then I can think about what I'm going to do I'm probably going to get the surgery I just don't feel like there's and option I just can't see going on living with this daily pain like this it's like something must be done. anyway I just want to focus on celebrating..


    I am home now and it is may now and I am still dealing with infections, and just have a black pressure sore on my foot now. It hurts. I EXERCISE by walking around but no p t right now. I never go out for appointments now but i am trying to get back to shape. I ordered new pink shoes. I want to wear shoes again. I a am ready to walk around and be healthy. 


    I color,watch netflix and visit with friends here. My life is sad though. My days are filled with prayer, as i try to be willing to livve as i am given my days but i seek better health and days.


    I wish my roomie was given a better bed, better food, better time.


    I am learning to sleep with a sleep apnea kit. I used the nose pillow thing but it shot air up my nose and choked me when i opened my mouth, then the one that went aroundd my nose was too tight. I like the one that lets me open my mouth and talk. Of course. I would not like ever being gagged.

  6. I realize God has been very kind to me in general. I am blessed to have amazing husband & very smart kido though he is very independent & hates me if I try to get him to do something. All through out his life he has been go-getter, if he wants something, he will work very hard & get what he wants. he is good in studies, sports & playing out with friends, he is not organized, will wait till last minute, which drives me to wall & stress out.  since his high-school years he wanted to get into medical field which he could have gotton right after his high school, which he had messed up due to his not  being  organized in 9th  grade & getting his grades slide a bit. Anyhow that taught him lesson so he did pretty well in his college years & applied to multiple medical colleges. Recently we found out he got accepted in few medical colleges. We all are so happy & thrilled about it, though what I am more proud of it was that I had asked him to assemble some cabinet I had ordered online, & he was givig me runaround for few weeks, fianally he came & did it for me in few hours. I was so happy & told him we will give him assembley money he saved us, & what he told me made me proud mom, he was like mom you are insulting me by saying you will pay me assembly money, we are family & we do things for each other. I was so happy told him, you know it really does not matter to me as much that you got into top medical schools or not , but what you said matters to me most. yes we would have been unhappy upset had he not gotten in medical school, but being nice human being who loves his family matters to us more. So I feel I got my mothers day gift already.



  7. The past few days have been tense. My Dad and my Stepmom hold secrets. During this time when we all feel so lost and vulnerable and want/need transparency. When my Dad was in the hospital (Vanderbilt) and was told for the 2nd time "You have cancer" we were all (including all the Specialist and Doctors) so happy to hear "It's not metastasized lung cancer... It is altogether a different cancer". That is HOPE. Just that knowledge. My sister was at the hospital a lot. Not me, I was sick with strep throat and strokey as I call it. It's an hour drive. I'm glad I didn't go... I didn't know I had strep throat when he went to the ER. Vanderbilt is the most specialized hospital we have in Nashville. It's a research hospital and a University hospital. Vanderbilt University is known for their Med program and Vanderbilt Hospital is state of the art. Daddy's Oncologist team came up with a protocol they felt would give my Dad the best chances. He could even go to Spring Hill and get his treatments. It is just 30 minutes away. He had said he wanted to go back to the local cancer center which is not affiliated with Vanderbilt. My sister was so upset...she got into an argument with my Dad and he promised her he would go through Vanderbilt. (BTW I didn't know any of this happened for quite some time after he had been home). Daddy lied to my sister that night to stop the argument intending on going to the place locally all along. Janice my stepmom held his lie secret. I'm oblivious... It came to my attention one day when a therapist came and mentioned the local facility. I stayed at my moms for a few days and I talked to her about Daddy going to the local place that I thought he was going to the Vanderbilt facility in Spring Hill. My mom said he is he promised Tammy (my sister) and at that moment I realized I knew the lie I just didn't know it was a lie until right then. I stopped talking. I talked then with my Dad and Stepmom and asked them some hard questions. They told me and told me to not say anything to Tammy. 😞 This scenario is horrible for me. So my dad had his 2nd round of chemo this week and it has hit him hard! Then today we had the main OT come back for a reevaluation because my dad fell day before yesterday. Janice woke me up at 5 am and said you need to come help me. I went to the bathroom and Daddy was on the floor and couldn't get up and Janice couldn't get him up. He was sitting in a large area of liquid (urine) and his feet were slipping. I grabbed towels and a non slip rug so he could get his feet steady and then together it took me and my Stepmom like 20 minutes to get him up. He is on constant oxygen and had not taken it to the restroom. So I ran quickly and got his portable oxygen machine. We got him back to bed using a walker and he layed down and went to sleep. 😐 Then last night he was in the bathroom again without his oxygen and his O2 was so low that he couldn't think straight. He was going to fall and my Stepmom called me to the restroom. I said hold him if you can and I ran and got his portable oxygen device again. He kept saying I don't need that oxygen..when I got back to the restroom we got him onto the toilet and my Stepmom told me he still had to go. I by that time realized I was standing in a pool of urine. I had to help get his undies down because he couldn't and Janice couldn't. (BTW I'm completely OK with having had to help my dad get down to his birthday suit. He is my dad and I would only choose to help him. I don't think he remembers or he would be really bothered by it. I'm glad he isn't upset). Today while the OT was there I sat in the same room. He told her yes he fell because he feels weak but his air (oxygen) has been fine. I am very aware that this is not true and my Stepmom just said nothing so I told her the truth. She explained to my dad that he has to use the walker and his oxygen right now for his own safety. He started to argue but I said "Daddy do you want me to put the really long tubing on your oxygen machine?". He said he didn't like it because he gets tangled up in it. So I suggested that he take his portable oxygen device with him to bed each night it was light and that way he could easily switch cannulas when he needed to use the restroom. He could hang it on the walker and no long tubing would get wound around his legs. He said yeah I can do that. My stepmom then said "Well I haven't ever seen you get wrapped up or tripped by the tubing". He told her he has he just hasn't told her. She was looking at me or sorta glaring at me. I felt like she was angry at me...even though Daddy agreed with my idea. She then said well ill take that other walker and put it in the bedroom. The walker she is speaking of had been hers during her hyperparathyroid issue and after removal of 3 parathyroid lobes. She fell with that walker and it was really bent up. I had fixed it at the time for her she did not want to get another. I told her Daddy didn't need to use that walker. She said well so and so gave me that other walker your dad's been using. I then said well let's order Daddy his own. I'm thinking... 2 walkers in great shape one for each room. His insurance will cover it he has not had one ordered for him yet. She argued with me that no so and so had already given him a walker. I then just said "That walker that had been bent does not need to be used period. Daddy will have to put all his weight on it at some moments and it wouldn't be safe". I also walked back to the bedroom with my stepmom and said we have to clear this whole path from your bedroom to the bathroom to his chair. It has to be safe not a trip hazard. His bed only has like 7-8 inches from his side to the shelf on his side and past that is his big oxygen machine and then all sorts of stuff on the floor. (Remember - hoarder/collector) and the hallway has stuff on both sides. As you go into the kitchen there are cabinets and shelves with hundreds of cookbooks and glassware. It's very narrow in that area. I think Daddy had to turn himself and the walker sideways. I made a comment about what I felt we needed to do. She was coming unglued...yelling everything is fine. Then she said "I'll move the furniture". I told her she was in no shape to move big furniture period that I would get with Tammy and we would come up with a plan. At that moment she just taunted me that she was too going to move it that she had moved a lot of furniture. I just said not this time Janice. I had to go run errands. I also had to go to my sister's office and talk with her about what was going on. (BTW I told my sister what the lie was and she had said something to my stepmom yesterday. I didn't even get my foot in the door before both my dad and stepmom bombarded me with questions. Tammy and I g ad agreed not to say anything about me telling her... I have to live there. She didn't tell them they just naturally assumed. I played dumb and after about 10 minutes my dad said OK I believe you. So yeah its been a rough week). I talked with my sister about everything. I know that home health will evaluate that he is in a safe environment and that includes his ability to be free of trip hazards. If they don't comply, the risk that my Dad can be removed from an unsafe environment and put in a nursing home is high. I have also been worried about when I move out which should be this month. Will my stepmom have the physical or mental capacity to handle a fall like the other morning? Will it trigger in her to call 911? Will she just be there running around thinking "I don't know what to do"? Then tonight after my dad went to bed I sat down to talk with Janice. It turned into something really negative. I can't write anymore, I'm exhausted. Plus I have written a book. to be continued... 

  8. ksmith
    Latest Entry

    Well, this Sunday afternoon I fly to Florida to finally meet my grandson. It's so weird to say grandson. But I love that I'll be a Mimi. 🙂 This little guy has been through a terrible first month but he'll be two months this 18th.. I sadly won't be there for that but I'm eternally thankful for his grandparents opening their home to me. It'll be a good visit.. HOT.. yuck :lol:  


  9. GeorgeLesley
    Latest Entry

    Been awhile since I blogged so here goes. I did my trip in August to see my longtime friend in Texas. He is doing well, still has some reading deficit but getting better. No other issues at this time. We had a great visit, he took me to the Ft Worth stockyards and I rode a long horn bull! From there I went to see some other friends in Louisiana for a few days and saw the WWII museum in New Orleans. I drove the trip alone, just me and my Mazda Miata with the top down most of the time and my favorite music going. Fortunately there was nobody along to listen to my singing.


    Some sad news, another very longtime friend has some significant health issues. He is 11 years younger than I am but life has not been as kind to him as it has to me medically. I just made another friend by accident recently. He is the husband of the lady we hire to take care of mum when Lesley and I need to leave her alone for a 1/2 day or more. We really hit it off right away but unfortunately he also has major health issues and is 20 years younger than I am. I also recently looked up a couple I knew over 40 years ago while stationed in Italy. Very sad news there, he is a bit younger than I and just diagnosed with terminal cancer. Wow, so much bad news among guys I know about my age! 


    I am most thankful that my health is at the moment very good. Stroke survivor yes, colitis sufferer yes, but all in all very healthy and grateful for it. Seems like the past several months since I had a heart ablation and a pacemaker implanted and I have been able to start exercising again most days I really feel great. I can tell my body missed the exercise I missed during the heart surgeries and our Alaska trip.


    i have a few other “guy” trips planned and will take another guy along if I can find a healthy one. There is a college baseball tournament in May I may go to, it has been on my bucket list for many years, and it looks like to me I should get on with doing whatever is on my list. In June Lesley, mum and I are going to Minnesota so I can get my fishing fix. On the way back we plan to take mum to the Auburn car museum in Indiana so she can relive the memories she has of her late husband Bill and her driving in the Auburn car they once had in New Zealand.


    then in July me and my Miata are heading to the A.C. Gilbert Historical Society convention in Akron, Ohio. He invented Erector sets for young boys like me to build with and many other toys for young lads to enjoy. I hope to see a “tractor pull” while in Ohio, another “bucket list” item.


    maybe a fall trip after that in the motorhome with all three of us and the two dogs to somewhere, maybe the Ozark’s of Arkansas and Missouri.


    mum is now 96, 97 in September. She is hoping to get her 100 year old letter of congratulations from the Queen which members of the British Commonwealth get. Her health has greatly improved since our return from Alaska. At this point I think she may just get her letter. I wouldn’t bet against her. I can also say that the best two years of my life have been the last two since she has come to live with us. I would not say that about all mother-in-laws, but her, yes.


    anyway, enough for now, life is very, very good here, even though we are unworthy.


    time for tea.


    P.S. I forgot to mentioned we had the privilege of hosting two disabled vets a few days ago for one night,that or part of a group of 10 such vets currently hiking the Appalachian Trail which runs over 2,000 miles from Georgia to Maine. 

  10. Strokewife
    Latest Entry

    The Syringa Vulgaris plant interestingly is a flowering shrub of the olive family. It is native to the Balkan Peninsula. This decadent ornamental bush is widely grown in many European regions as well as North America. In ancient Greek mythology the story is told that Pan, the god of forests and fields was hopelessly in love with a nymph named Syringa.  Legend is she being afraid of his advances disguised herself by turning into the aromatic shrub.  He never found her yet he found the bush. Noting the shrub had hollow reed like branches Pan created a pipe from those limbs. The scientific name Syringa Vulgaris is derived from the Greek word “syrinks” which means pipe. This flowering shrub used to make the mythological god’s panpipe is commonly known as Lilac.


    As she stood and inhaled the night sky illuminated by the spring equinox moon she reminisced of her home. It was the spring season when the lilac bushes permeated the air.  Not only are the shrubs beautiful in their hue of white, pink, and purple but their sweet aromatic scent embraces anyone who inhales.  It had been many years since she journeyed to her homeland in the central region of Illinois.  Both her stroke survivor and she grew up in the prairie land commonly known as the black belt because of rich fertilized soil.  Their journey to the state of Texas happened in pursuit of a dream.  While the predominant one season of summer was welcome by them with living in Texas it was much different than where they grew up with the four seasons in Illinois. Specifically, the blossoming of lilacs didn’t happen in Texas. So on that night when the brightness of the moon hugged her being to announce the arrival of spring tears rolled down her cheek. More so she imagined the perfumed aroma of lilacs back home while intentionally pondering days of old and longing to travel.


    More often than not her stroke survivor talks about those days of his youth.  He speaks about the time as a teenager when he was a speed skating champion, or his high school years when he was captain of the drum line. He reflects back to the nights he worked as a disc jockey at the local dance club. Those days of winning foosball champions and playing a drinking game called quarters for alcoholic beverages are all among the stories he frequently tells. His college days where he excelled in computer science,  receiving honors as top of the class, he reminisces.  The days of old are a dominating force in her stroke survivor’s mind where he currently dwells most of his days. Simply, if you ask him about today like what movie did he watch, what the television show is about, or to count to ten he cannot always do that task. Often with the speech therapist when being challenged in word association games he will avoid doing the assignment by telling stories of his younger years. There are days that are on point. Some days she feels like he could just get up, grab his car keys and go to work as if nothing were wrong. That image dissipates quickly and she is reminded of his deficiency while watching him struggle putting a spoon to his mouth when eating. And too, he will repeatedly ask to see his yearbook, play a movie that is decades old and he has seen a hundred times, or tell her a story over and over like it was the first time.


    She didn’t know how many there are like her husband that are propelled to a different plateau with their stroke where the mind has short circuited because of seizures. The cognitive defect that engulfs her husband’s brain creates confusion so he goes back to that which he remembers very well. She is sure there are fancy medical names for this short-term memory malfunction but she cannot name them. Somehow, with his memory loss her stroke survivor still seems content. 


    So as she breathes in the night air of spring she thinks about those lilacs back home.  Maybe her stroke survivor’s short-term memory is like Syringa from the mythological story and has hidden itself within the aromatic bush. Perhaps Pan is long-term memory and the reed pipe he made plays a continual recognizable tune that comforts her stroke survivor. None-the-less, when she spoke to him about missing the scent of lilacs back home he too commented about them but told the story of dreading having to trim back the lilac bushes at his childhood home thus his memory wasn’t as pleasant. However, it was that moment she realized they had a typical conversation. There was no speech deficiency or failure to recall. And while it was a long- term memory for them both it was a moment that reflecting about the lilacs back home addressed her longing to travel. With that she once again pondered days of old. Softly she reached up and wiped the tears of joy from her cheek.

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    Recent Entries

    my wish finally came true, I always wanted girlfriend group with whom I can talk to about anything that is in my mind. Finally it happened, & I met with 4 other ladies on Friday for lunch at one of the person's home. It turned out most of them are way older than me & are now grandmas, only one person in there was still young one. but what I have learnt from joining this site that even though most of the members who I met here initially were older and from different socioeconomic, but underneath we all were struggling with similar emotions, So I think I will still give this group shot & see where it will leads me. I am realizing how blessed I am & kindness of higher power, who always helps me out.




  11. 5 years ago, today.  My life. my world changed in the blink of an eye.  With an aneurism (intra cranial hemorrhagic stroke,

    a brain bleed) and mild stroke. 

    It took awhile but I joined the network.  The connection made have helped me so much, offering hope, inspiration and comfort during challenging times.

    It is wonderful to share hopes dreams and concerns with others who truly “get it”.

    Thank you, we need to look after each other as we continue our individual journeys.


    Be well, stay strong,

    Jay Allen

  12. This transition to widowhood has been easier than expected.    That is because the good bye was a long one.  3 months before William died, my son, had come down to visit.  He told me that William was declining and suggested that I look into hospice.  I wasn't ready for that.  But it got me into really thinking about life without William.   So my good bye was a long one.   Then the month that I put him into hospice was the real  start of the end.  Everyday was like the last time that I might see William alive.   Especially when I had to put that hospital bed in the living room.  Then the last week was really hard.   That was when I afraid to leave the house because I felt that every breath was going to be the last one.  The good bye was soooo long.   I am so happy that William is out of this life.  He so wanted to get out of that hospital bed.  But, I was not able to get him out by myself.  I felt so bad.  I had been able to take care of him by myself when he was able to give me some help.  But at the end he could not help me anymore. 

    I am taking classes at the community college,  taking bible studies and getting involved with the church.  I did start going to a different church because the one that I went to with William would hold too many memories.  I walk the dogs on long walks. I still go to the gym every morning.  I like to swim and started doing the machines this year.  The gym does not hold a lot of memories with William because he did not come but a few times.  It is freeing to be able to be out and about.  I no longer have to rush home and check on William. I don't have to stop and by him something special to eat.  I don't have to save part of my lunch for him to share.  I will be going on vacation with my son to Mexico.  in early November.  I will visit him at Thanksgiving and Christmas.   This will be the first time in 10 years that I have left the house and flown.  I am planning on going on a mission trip with the church to Mexico. in January.  I will go on the women's retreat also. I may possibly go on another mission trip to Kenya. It is so amazing that I can actually leave the house and do stuff.  Life is going on and sometimes I get a little sad.  But nothing like the 3 months before William died.   I will decide on when to move out to California with my son.  I am going to wait for a year then get my things together to move.  The last week that William was living was when I packaged up most of his things.  Now, I just have get myself together and get my clutter under control and start the process of moving.  

    I have gotten a lot of the paperwork done.  This has coincided with my pension starting.  But, fortunately all of this paperwork has been mine to deal with for years.  But, I hate paperwork and procrastinate.    

    It is amazing!   I am able to sleep at night.  THat last month was so hard.  I could not sleep at night.  William was always up and so was I.   I sometimes wake up at 1AM and then am able to fall back to sleep.  I am at peace.   When William was here, I had to very vigilant 24 hours of the day.  I did not sleep a lot.  I awoke at the least little movement or noise.  I just thank God that I am able to get a good night's sleep.     

  13. Since my stroke, I have been living as a guest in my niece's home.  Her daughter, my sis, also lives here, in the finished basement of an older tri-level home in a very small Indiana town.


    Honestly, life here suits me fine.  I have everything I need, even though I need help with a few things.  I do feel that I am capable, both physically and mentally, to live on my own, in my own place, and sometimes I do feel some slight guilt at my imposition on the niece and her family, but she did invite me, without limitation, to stay as long as I like or need.  I don't want to feel like I am taking advantage of her or my sister for their generosity and hospitality.  I do pay my share of rent and bills, but more important is the fact I am able, while living here, to save money.  Up to, in most months, $700-800 per month, and am aware that the longer I can deal with the guilt feelings I can save a good sum of money ,if I stay another 18 months, to get me started in a new, independent existence, probably a couple hours north of here where I would be closer to doctors and medical treatment.


    This is something that is constantly gnawing on my mind, and I am a very impulsive person.  so I am a bit scared that one of these days I am going to succumb to impulses and move out prematurely before I am really prepared financially.


    This is something I have dome many times over in the past.  I can actually admit to occupying over 20 different addresses over the past 14 years, including a couple homeless periods when I lived out of my car in Florida.


    I honestly, as an unattached single person kind of enjoyed the homeless lifestyle, free of responsibilities, but in my current physical condition I think I would be too vulnerable to attempt the homeless thing again, as tempting as it may be.


    Truthfully, too many lingering and transient periods of hopelessness and thoughts of self harm haunt me, so indecisive I be, for now, until hopefully my mind settles enough to make rational decisions.


    My mind, with all it's crevices and dents, is a prohibitive factor in my decision processes.  at least I am able to recognize this about myself.


    I always had this dream of just living from day to day sleeping wherever I could find a spot for the night, constantly moving, indulging the generosity and hospitality of whatever stranger presented opportunity, but then I would catch myself, suddenly recognizing my own limitations in the socialization department.


    WTF is wrong with me?  At times like these I feel even more of a freak than normal...


    But it must come out, and empty this mind of this scrambling, I must..


    Just one more rant of admitted loneliness to deal with so, happy Sunday, I guess, for now.

  14. JeriB
    Latest Entry

    Well, it's been a long road to hoe, but Dad passed away on March 14, 2018.


    While it was not a stroke that did Dad in, I'm sure the history of the stroke and diagnosed vascular dementia helped.  Per the death certificate, the doctors called it  "End Stage Dementia".


    Lots happened since the last time I was on and even posted, but as a quick timeline...


    Dad lived with me until April 2017....


    April 2017 - Moved into Assisted Living


    September 2017 - Had a cognitive issue that required him to be "in respite" on the rehab side of things.  It was meant as a temporary holding space until the memory care unit opened up.


    Early October 2017 - Got pneumonia


    Mid to Late October 2017- His kidneys failed and he ended up with a "classic" catheter and 50% kidney function; and was placed formally in the nursing home.


    Thanksgiving - 2017 - The "classic" catheter was changed to a permanent supra-pubic


    December 2017 - Things were okay...


    January 2018 - I started noticing him dropping things and not really with it.


    February 2018 - I was helping him with a special treat and at one point he could not tell that he was not holding it and was chewing his own finger; more dropping issues; 


    Early March 2018 - We started him with the in-house doctor as it was too hard to get him out; She recommended that it may be time for hospice.


    March 11, 2018 - Hospice paperwork signed


    March 14, 2018 - He was gone


    So now I have to relearn how to live my life.  I put so much on hold while taking care of him and being so involved even after moving to AL.  It's only been 4 months, sometimes it feels like yesterday.  Other times, it's easier to bear.  As much I know saying something can create the situation, this first year is going to kinda suck.  I've been to my therapist and we talked about the fact of his passing and realizing that I'm now grieving mom finally too.  Dad moved in with me in Sept of 2013; Mom had just passed Feb 2013; His strokes all happened in Jan 2014.  I never had a chance to properly grieve for her.  Now I'm reliving her passing and coping with Dad's passing also.


    So that's it in a nutshell.  I had wonderful friends throughout this that helped and are still helping me.  I'm still struggling from time to time, but it will get easier.

  15. Ive managed to confuse myself - I have like 6 different blogs all with entries in them... no rhyme or reason except my own randomness- it there any way Admin could combine them into one that is just NancyL blog? 

    Dan has been doing well ( as he can) he loves coming to my work and putting stamps on envelopes. It is a very precise process for him. It seems to give him a avenue for his OCD -- puzzles could do that for him, but , puzzles aren't "productive" - stamping is. lol I am very fortunate to have a boss who allows this, and its a balancing act to keep Dan at bay so he doesn't manipulate his way into it becoming daily... 

  16. Do we REALLY know each other?


    I challenge other Stroke Network bloggers to make a list on their blog of 100 things we do not know about you!


    1. I had a rare type of Brain Stem stroke on the Pons. It caused quadriplegia and loss of speech. My stroke happened in France while I was on a business trip. This occurred over 20 years ago in 1994.

    2. I founded the very first on-line stroke support group on the Internet in 1996. This group became known as The Stroke Network in 2001.

    3. When I was little I used to collect bottles for refunds so I could buy a Slurpy.

    4. I had a paper route when I was a kid.

    5. I was an Alter Boy when I was in 4th grade.

    6. I am good at math.

    7. I have a good sense of humor.

    8. I do not like controlling women.

    9. Bossy women turn me off.

    10. When I was little, I was sitting at dinner with my whole family one night when I decided to tease my little sister. I put a single pea in her glass of milk when she wasn't looking. When she finished drinking her milk she found the pea and started crying.

    11. I used to throw rocks, when I was a kid, at cars and then run. I never got caught.

    12. I am a good swimmer, good water and snow skier and good at most sports.

    13. I have always been athletic.

    14. I never did hard drugs.

    15. I smoked pot in high school.

    16. I was never a bully nor was I ever picked on.

    17. I had hair over my shoulders in high school.

    18. I joined the Army at 18.

    19. I love organization, structure and discipline.

    20. I never had KP the whole time I was in the Army.

    21. I started dating my wife at 16.

    22. We got married when I was still 19, she was 20.

    23. I have never been overweight by more than 10 lbs.

    24. I have 4 grandchildren.

    25. Everyone in my immediate family has green in their eyes.

    26. I have an AA degree in Engineering Technology and a BS degree in Management.

    27. I have the GI Bill. The government discontinued this benefit 2 weeks after I joined the service.

    28. I was a draftsman for the first several years after discharge from the service.

    29. After my draftsman job, I worked in a lab.

    30. I love watching football.

    31. I only watch baseball if my team is winning.

    32. I have 3 brothers and 2 sisters. I am in the middle.

    33. I am a workaholic.

    34. I wished I lived in Key West.

    35. My second choice is Hawaii.

    36. I love the beach and the ocean.

    37. I love thunderstorms.

    38. I prefer to work with women.

    39. I hate gossip.

    40. I am a loyal friend.

    41. I do not lie.

    42. I live a very moral and boring life. I am proud of this!

    43. My ancestor was Myles Standish from the Mayflower. It is documented and I have a flow chart of my lineage on my personal web site.

    44. I have had Type II diabetes since 2008.

    45. I have an ancestor who fought in the American Revolution and one who fought in the Civil War.

    46. My personal website is at http://www.stevemallory.org/

    47. I love to watch movies about war.

    48. I know a lot about WWII.

    49. I hate chick flix.

    50. I used to read every Tom Clancy and John Grisham book.

    51. I have traveled to several countries. The USA is the best place in the world.

    52. I have been to Monte Carlo.

    53. I have been to topless beaches on the French Riviera.

    54. I have had Central Pain Syndrome (CPS) since 1998.

    55. I used to beat up my little brother.

    56. I taught my daughters bathroom noises. They still make them. My wife is really mad about that.

    57. I used to take my daughters out to dinner every Friday night.

    58. I have bugged out early from work to play golf.

    59. I have been to Korea several times.

    60. I give everyone nicknames.

    61. I used to flirt a lot.

    62. I love southern accents and southern manners on women.

    63. I am a butt man.

    64. I wear fitted boxers.

    65. I do not smoke.

    66. I do not drink except socially.

    67. I like to work hard but like to play harder.

    68. My favorite seafood is a crab cake. I also like steamed shrimp.

    69. I do not like most vegetables.

    70. My favorite cake is Red Velvet.

    71. I like a good cheese steak sub.

    72. I really really do not like lima beans.

    73. I can make hot dogs and French toast. This is about the extent of my cooking knowledge.

    74. My daughters and me used to kick my wife out of bed on Saturday mornings to make us pancakes.

    75. I hate spiders.

    76. My favorite movie is Band of Brothers. I have watched all 10 series about 25x.

    77. My cat sticks his tail straight up and vibrates it when he wants somebody to scratch his head. The whole time he is doing this he prances around your feet.

    78. I like rock and roll played really loud.

    79. I like to listen to Christian Rock.

    80. I have television on my computer.

    81. I like to tease everyone, especially women!

    82. I can play the piano by ear.

    83. I cannot sing, now nor ever.

    84. I don't like green eggs and ham.

    85. I have never spanked my kids.

    86. I have never cheated on my wife.

    87. I have a happy marriage. I have been married to my high school sweetheart since 1977.

    88. I have two cats. One of them snores.

    89. My hair started turning gray when I was only 18. It is completely gray now.

    90. I still have most of my hair.

    91. Both of my daughters never had a cavity.

    92. Both of my daughters were walking before 1 year old.

    93. My daughter graduated from college with a grade point average of 3.5.

    94. My wife can do almost ANYTHING!

    95. I hate the local news.

    96. I detest bad cop shows.

    97. I am a Republican. I used to be a democrat, though.

    98. I do not agree with most Democratic views. As I get older, I have become more conservative.

    99. I think Letterman is an idiot and a total jerk.

    100. I voted for Bush twice.

  17. I've recently gotten into bullet journaling - which has went into an art form, and I'm loving it.   I started trying to bullet journal around the middle of Feb, and use a 2 pg daily spread, with everything on it. One of the many things I want to try to get back into is my stroke hubby's therapy, that we are not doing anything, on a regular basis, on (stroked 2012).    I got this free print off from a bullet journal group, where the designer wanted to see what people would do with it.    There were many things I could use if for, and I pondered it carefully.   Then I thought if I used it for his therapies, he might get more excited about starting again. I will probably have to reprint it as I get better ideas on how to do it, but this is a learning experience. I like how it will be a visual for him, to see what he's actually doing. I just got it made and he just started a reading period, so the first day (Mar 11) shows he has started. After he read he told me (in aphasia talk!), "you have to make another picture, I'm playing solitaire now!" Game playing is important to his decision making skills and cognition, and I was very pleased that he initiated something on his own! So, I put another item on his list and marked it on the calendar - I think this is going to go over really WELL with him!


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  18. I'm still here... no real changes... the nursing home makes a vague effort to try to assist more... but dan does a god job with his OCD and control mechanisms .....so i keep dancing... Nancy the dancing bear...lol.....My routine is the same , get up take grandson to school (for now - my daughter works early and his dad fell and broke his hip at christmas, had a replacement done - is on the mend.) drop him off, go to work. work till noon, get dan his mc donalds ( i give up fighting about his food) get him up, wash him up ( unless its a shower day - 2x per week ) then he will either sit up for a time and play checkers on his iPad and watch tv or i will take him to my work (I work as a law assistant , it is part of my low pay, but freedom benefits agreement i got with the boss) he'll hang out if he comes to work with me. Then we either get mc donalds and go to my daughters house or back to the home. If we go to daughters house i cook there and he eats there. then back to the home where i wash him up and get him into bed.....then i either go home or once in awhile go out to my local hang out ( bar) have a few and go home... thats my life in a nut shell-- for now I seem to be able to manage.... my anxiety and depression is sorta under control--- but I still lie awake with the what ifs of the world... thus the reason Im posting on stroke net at 3 am.... lol--- I play with the idea of caring for him at home ( mine again) but know although it makes great financial sense it makes no mental health sense . Dan has the capability still to mentally devastate me. ... and thats a road i can not walk...... old timers on here remember that... lol.... life is manageable, not good or great , or fun , or full filling, but it is fine line manageable..... or as everyones favorite saying ------ IT IS WHAT IT Is.....


  19. worryisamisuse
    Latest Entry

    Ya, ya, I'm amazing. I have and am overcoming a lot, and I have many able-bodied friend and family members, but I would like to make friends and share more BI hardships, or I met a guy who suffered a SCI who I have a lot of similarities with too...  Basically if you're amazing (and you probably are) you should talk with me. What's the worst that could happen?

  20. cypher

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  21. lharrison
    Latest Entry

    its that time again HO!HO!HO!a merry Christmas to you all just wanted to wish all of the members, a very merry Christmas to you and a very happy new year wish for you. a wish that you will get all that you want to have I hope that 2o18 will be a very good year for you , and now it is time to do all that you are able to do so that you may continue to get even better . so never give up and always strive to be the best that you can be and always know that I will be there for you cheering you on for you so merry Christmas to you and a very happy new year , and rember this your brain can and will repair itself , so never give up

  22. Well it's that time of year when everyone is running around trying to buy out the stores and cook all the food in one day! LOL! Me I'm just plain lazy to all this. I bought my 3 Grandbabies Christmas presents online and never once went to the store to try to shop. Prayers that everyone will have a MERRY CHRISTMAS AND A WONDERFUL NEW YEAR!!! Praying for all my wonderful friends on this site and all of you I haven't had the chance to meet yet but hope to one day. Love and Hugs to all!!!


  23. My son has to be on call for work on Thanksgiving, so he's invited a bunch of people to his new house.  My husband has to work, I don't drive; I can't go.


    It's been years since my stroke, and I think I've done a pretty decent job of accepting my physical deficits.  Today though, this really, really, really stinks!  :@#*%:

  24. I recently stumbled across yet another device that can make a huge difference in the daily lives of stroke survivors and their caregivers. This one is called Shower Buddy and it is a high-quality, well designed product that makes bathing easier and safer for people with mobility problems. My wife is one of those people. She had been growing increasingly anxious about bathing and as result my own anxiety level climbed as well. We were starting to dread bath times and our stress load grew heavier with each bathing. Dorothy was suddenly paralyzed with fear each time she had to move from her transport chair to her shower bench, with help from me throughout. I'm reasonably strong for a guy of my age, 73, but I couldn't help but worry about what would happen if she slipped or fell. Keeping her safe has been one of my primary objectives for the four years that have passed since Dorothy had her stroke. i considered several approaches to this problem, including a major bathroom remodel that would cost thousands and still not be ideal. I also considered one of those walk-in tubs but I had serious doubts about whether they would work for Dorothy. She would still have to walk on potentially slippery surfaces and she would still have to sit and stand on the tub's chair. After researching the Shower Buddy I decided that it just might be our best option. I showed videos to Dorothy and she agreed. So we bought one. They retail for $3,000 but we bought ours online from a woman who had bought it for her brain-damaged daughter but had never been able to use it. She offered to reduce her price a little to persuade me to buy but I paid her full asking price, which seemed fair and which I assume she could use. (I didn't want to add to her problems.) The Shower Buddy has turned out to be a huge improvement for Dorothy and me. It has a big, sturdy a chair thanks to excellent design and engineering  can easily be slid over the tub. She never has to get out of that chair. No more danger of falling during transfers, no more anxiety. Bathing is now pleasant for her--and for me. I wanted to share this with people who read this part of StrokeNet in case any of you might benefit from this product. I realize it is not cheap but I also realize it is a true godsend for some people. Be advised that the Shower Buddy is made of metal and appears to be of high quality. It is very sturdy too and is designed so that there is no wiggling at any point. Like the lightweight foldup power wheelchair about which I previously wrote on this web site, the Shower Buddy takes a lot of stress out of day-to-day living for us. And had we not stumbled upon it in the course of doing online research we probably would never have known about it.