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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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  1. ksmith
    Latest Entry

    Yesterday I finally had my ablation on my heart to stop the rapid heart beat. I wasn't nervous for my cousin, who is a cardiac nurse and also had this done, walked me through everything. It didn't hit me that I remember them adding the adrenalin to make my heart race so they could find out where the 'road block' was. Basically,  you have two tracks that the electrical currents  in your heart go around that keep your heart function.  So Imagine you have two tracks above each other but the one with that contains the faster of the current (: if you get excited or caffeine your heart beats faster and you also have a slow lane that keeps the balance- ) well one of mine didn't have a complete track because one of the tracks had extra muscle that made the faster currents speed faster in half the space.  image.png

    When the current would get trapped in the smaller loo[p, my hear rate would jump to 240+ beats per min. SOOO..

    When I felt them making my hear to go fast, my jaw started to hurt, I began to sweat , same as always, but when it stopped I thought they  stopped the medicine for I didn't feel the usual chest pains but it just stopped beating fast. That was the time when he performed the procedure and fixed the problem.. it is amazing.

     

    The down side is they went into both side of my groin so pain, no driving, no swimming, no lifting.. To most people that might sound like a day off but no driving to my Aunts house to swim in her pool.. But I can drink coffee.. but I'm still scared but he ( the Dr) said it was textbook so no issues. Same day.. Long day. My parents and I left my house at 4:30a for the 90 min drive.. put on to prep at 7:15a wheeled into the OR 8am   finished at 12pm.. post op full bedrest until 4:00pm.. leave hospital 4:30pm (Philadelphia Rush Hour) made it home by 6:45p.. My son, 15, stayed home with the cats.. don't blame him..  I slept partially seated for my pelvic area was so sore.. Better today.. Apparently I emailed people while still drugged lol  

  2. SassyBetsy
    Latest Entry

    I spent 5 days in hospital for cellulitis in my good left leg brought on by lymphedema and other swelling stuff.  They do not have oxymorphone in hospital so I took oxycontin. It did not work as well plus they did not wake me up around the clock for my meds even though the doc told the nurses. I suffered. But I got treatment. Then released to thehome. Only to find they discontinued all meds after 3 day absence. So think this would be easy to get its all back again? They did not order my meds and they ran out. And no one could fix the code the pharmacy needed except my doctor that was MIA.

    Then all fixed by a traveling nurse who took charge.

     

    So I have to heal. I hurt.

    I have fluid  now congestive heart failure. I got through it. Healing

     

    Pain management clinic is only for clinic time now.wow.

    Last time the fellows were so nice but hey things change. 

     

    I just ask for help.

    Sheesh

    Always CPS.

    and I try to get rest.

    I felt alone but then son is busy and ill. I was just me. I feel ill still but I enjoy painfree times. coloring.

  3. :@#*%::scared::yikes::pounding-headache::dumb::tantrum::feeling-blue::insane::crazy::no-way::#@</!!::frustrated::help::yikes::crazy::getting-sick::sick:

    Lemme just get all the emotions out at once. I've been pretty terrible lately. It is definitely time to see my shrink. Thank the Lord its Thursday. Let me go through my new range of crazy. I'm depressed, my anxiety gets so high I feel like I will burst, panic attacks almost daily, seeing things, hearing things, scared because I don't know if I am seeing things or hearing things, sense of utter doom Bad Bad Bad, the crickets made me have a panic attack, I keep hearing thunder rumbles but feel to my bones that something horrible is coming...plus I'm not even sure I actually hear thunder but it's there, I have been barricaded in my room 75% of the time lately, sleeping as much as I can, I don't want to be awake, chronic headaches, neck pain...Oh yeah I have that mass on the side of my neck, crying, crying, crying, hyperventilating, completely paranoid, obsessed with trying to find answers on the internet which makes it worse, feel like throwing up a lot, obsessively sanitizing, obsessive in general, oh did I say terrified at times? I think there is more but I'm too tired to write it. So what has happened? Ok so I found out my disability hearing is October 25th good right? My dad was diagnosed with stage 1 non small cell adenocarcinoma of the lungs 'm about a month ago. He has been doing radiation for 2 weeks now and started chemo today. He has a 85% cure rate...another pretty positive note. My extremely narcissist ex boyfriend of 10 years that I left a year ago because he replaced me with a 24 year old 30 years his junior has contacted me twice in the past month. My stepmom is neurotic and a clean hoarder ( I still live with my dad and stepmom for now). I found out today that my dad should be putting the toilet seat down and flushing twice when he uses the restroom. He NEVER flushes pee. He is diabetic, has COPD but in the last month has quit smoking and drinking, has beginning stage kidney disease and now has cancer and has to have poison given to him...radiation M-F...chemo every Monday. He checks his sugar, takes insulin, all without applying alcohol to any place a needle goes and hasn't changed his Lancet in forever. I've been sanitizing as much of where my dad touches as I can because he is overly susceptible to infection plus it is a safety factor for myself and my stepmom. I asked him to flush with the potty seat down tonight (I can flush the 2nd time before I go). He yelled at me and said I am not a Dr. and that the next person can flush after he goes and if they don't like it they can go outside and then told my stepmom they needed to get me a dog outhouse. I am thinking of his exposure or extra exposure as well as mine and my stepmom's. I think he feels ostracized and that I am a reason for that. Sighs....maybe I am. I don't know. I've had to call my mom every night to be talked down including tonight cause I can feel my heart racing and beating so hard. I couldn't get in touch with my daughter for a few days...her phone was cut off and it took a few days to have enough money to turn it on again. I was extremely stressed about it and worried something had happened. Yes this is a total pity cry, pooh blog, or whatever else it can be labeled. It is my reality though at least for the past 3 weeks. Can somebody say thorazine please. :cheers:I am going to go watch YouTube vvideos of kittens now. Night.

  4. 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.

  5. Once a year the Stroke Club I belong to gets together with four other clubs and we have morning tea with a guest speaker. Today instead we had a group survey as a charity fund has given a donation so that the Sydney based group can supply two coordinators to help the other groups extend their services. It is a great idea and addresses the problem of resource poor clubs going out of business for lack of new members. Our club is a flagship club as we have a lot of people sent to us by medical professionals.

     

    I have been a member of WAGS since 2006 and still belong because I can support the other caregivers and survivors on their journey. I have some wonderful friends in that Club who have supported me in so many ways. The discussion group I was in all said that they didn't know how they would have survived as well as they had without the love and support they had received from fellow club members. I agree wholeheartedly. In the bad years being able to tell others exactly what was happening without fear of criticism made such a difference. We all need that, people who love us without wanting us to be perfect, or even rational at times.

     

    I am so grateful now for friendship. Just to know that people love me or simply care about me makes such a difference. When I am not well, when I am looking at my life and not liking what I see in the future, when I am looking at the mud not the stars is when I need to know that I am accepted by people just as I am. I support others as much as I am able to, I have always had a great love of people, all kinds of people, and that keeps me going. Today I had lunch by myself in the shopping centre and just sitting watching families eating, laughing enjoying each other's company lifted my spirits.

     

    My family do love me but their busy lives mean they don't support me day to day. I know that is typically the case for many others here, we are here, they all live some distance away. When Ray and I were both well and had the campervans there was no problem  visiting family and friends but that decreased after his strokes. Now for me as a widow it is hard for me to decide to travel alone to see friends who are spread far and wide. And few come to see me. So it is easier to stick with local friends and leave those further away to  be contacted by email or  the occasional phone call which means we lose the closeness we once enjoyed.

     

    I had some good news last week when I saw the Melanoma specialist, my PET scan showed no hot spots so that is one clear test.I need four to be fairly sure I am out of danger. One down, three to go. I do have several other health problems to tackle so my specialist  is making me an appointment with a neurosurgeon to report on the aneurysm in my brain. She said now she has seen it in the MRI she must take the step of involving another health professional. That is another set of appointments to add to my calendar. But knowing what I do about stroke it is better safe than sorry.

     

    I am doing a lot of hospital visits, people from the church as well as friends from the community. One of the members of another organisation I belong to has a brain tumour, another a broken shoulder from a fall. My special friend Lyn has been in hospital for four weeks from when his chemo caused his body to shut down. He is slowly recovering but three days on the floor without food or drink have taken their toll. That certainly is a warning to those of us who live alone to make sure others know what is happening to us. I am aware it could happen to me under certain circumstances. I am doing a short course called " Better Health Management" which emphasizes the need to keep fit and take care of ourselves. I know I need to exercise more and keep myself strong.

     

    Spring is slowly advancing, sadly with no rain and most of the Inland in the grip of drought. A lot of our wheat, sheep and cattle farmers are in dire straits. Meat prices are rising and the cost of vegetables as they are sourced from distant markets. But I have a roof over my head and food on the table. Really we have little to complain of don't we? That is why we need to be thankful for what we have and mindful of the needs of others.

     

     

  6. I do have love hate relationship with my husband, in some things he is angel &  I love him for his behavior & in some cases he will act so indifferently that you wonder does he really likes to be with you or not. like I say he is great dad & husband in taking care of his responsibilities, you feel relaxed because you know he will make sure things gets done. but ask him anything I would like to do like go on some fancy vacation or going to restaurant, he will be least interested & you wonder whether he likes to spend time with you or not. but he does not stop me from planning it, but he is least interested in showing any enthusiasm for it. So I  feel I m dragging him & that reduces my joy, though after every time we go on vacation together because of my nature of going with flow we end up having lot of fun. So I hate that part of him, anything I want to do his first instinct will be to say no & then he will come around saying yes which reduces my joy. finally after my stroke I have learnt only I can control my happiness & not give any button of my happiness in other people's hands. But I hate that feeling as if you are living unattached single person, cause I would like to feel as family who takes care of each other joys & sorrows. Just writing down my own thoughts & confusion about life, love & family

     

  7. We have completed our Alaska and Canada trip about a week ago. I have attached a few pics of the trip (I think). It was everything we had hoped for and more. We left Tennessee May 4th and got back in mid July. From TN we went to Iowa for some minor repairs to the motorhome at the factory and then on to the corn palace in Mitchell, SD. Neat place. Then on to Devils Tower, Wyoming. From there on to Banff. Alberta, Canada. Mum loved every minute of it she was like a machine gun firing out questions about everything we saw. Kept Lesley and I on our toes!

     

    Lesley and I shared the driving everyday. I drove in the morning as I am fresher then and she drove in the afternoon. Lesley took a driving lesson last year with our motorhome and so I had complete confidence in her driving ability. She drove up and down the mountains without any problems and did a great job of shifting gears, etc. Mum was the wildlife spotter in the passenger seat.

     

    from Banff we went to Jasper, and the Icefield parkway between the two is spectacular. Mum saw an avalanche in progress on the way. From Jasper we went into British Columbia into very remote areas., Prince George, Pink Mountain, Fort Nelson Laird River and a few others. We went into Northwest Territories and saw the buffalo there. Very remote area.

     

    we took the Alaska Hwy to Whitehorse, Yukon and stayed a few. Days and hit a Walmart to restock. We saw large beards of buffalo, many bears, moose, elk, caribou and some other things. We did see a mommy black bear with three cubs in tow. Neat! We camped on lakes and true wilderness. Finally on to Alaska to a town called Tuk. And then on to Fairbanks where Lesley and I took a flight in a small plane north of the Arctic Circle and saw the midnight sun. Then on to Denali National Park and mount McKinley. 

     

    Then on to Homer, Alaska and George went fishing for Halibut and sea bass. Yum! Then on to Seward and the Fiords National Park via a cruise ship. We then wrapped up Alaska and returned to Whitehorse, Yukon. Our plan was to head to Dawson City, YK for some gold panning and then back to British Columbia. Unfortunately at that point mum started to have what we think were TIA’s. We immediately headed south to get back into the lower 48 states as soon as possible.

     

    after three days of hard driving thru Canada we were back in the USA and four days later were back home in Tennessee. We called the local doctor while still on the road and he agreed to make a house call and did so the day after we got back. He diagnoses likely TIA’s and heard some fluid in her lungs. He increased the Lasix and suggested oxygen. Since then she has recovered well but we are staying close to home for awhile.

     

    we all loved the trip and are most happy we did it even though we had to shorten it a bit. We have created memories that will be with all of us forever. Mum’s late husband Bill would have been happy so see what we did and I can only hope he was looking down with a smile.

     

    on the medical side, both Lesley and I are well, I am a bit out of shape due to lack of exercise and so will spend the next several months working out most every day. An exception will be for a short trip I will be taking next month to see a longtime friend in Texas. Lesley and Mum both tell me to go so I guess I will.

     

    well have to go now.

     

     

  8. Dan has had 2 uncles die in the past 1.5 months. Although he was close with them back in the day and up till the stroke would go home and hunt with them , they had not put any effort into coming to see him or reach out in any way. So when Jimmy died - I figured I wouldn't tell him, why- things good and bad like that create depression for Dan and by default depression in me as well . But one of Dans sisters decided to stop and see Dan at the home on her way home from Jimmys funeral and told Dan about it- so that blew up in my face. It had been 4 years since she had made any effort to see Dan but had to stop in and create some chaos. I don't think it was malicious - just thoughtless. although Dans family did make a "hub -bub" about no one from Dans family being in attendance. 

    So when "Terry" died I told Dan, and he wanted to go to the funeral ( he was closer to Terry ) , so we did. So we got hugs and a thanks for coming. But his family chose a inaccesible place to sit together and no room for Dan. So we sat in a area by ourselves. Some aunts came and sat with us and other various family as well. But Dans immediate family just stayed at their table and never came and talked to Dan . I could not have gotten him and his chair over to their table if I had tried. So we ate and we left. 

    It was a very uncomfortable experience. I guess I expect to much. And in reality, if situation was reversed would I be any better ? I don't know. 

     

    On another front - I have a friend who came home for a funeral from Oklahoma  , Her and I were close back in my old work days. She has had 2 kids and her husband is a genuine POS who just can't keep a job, can't be trusted to help with the kids, doesn't pay her opinions any mind, lets his family treat her like garbage - etc. etc.... the is is a smart hardworking girl. But through the past two or three years has only reached out to me during the bad times in her world. I have helped her financially, I have offered to pay to bring her "home" . But she stays in that bad situation. So she came home was at my house rehashing her life and I finally just said- Your married to a POS and the only person who can change your situation is you. She took it ok at the time. But musta ruminated on it through the night, cause she was gonna call me in the morning but never did, and I found out she left town. I feel bad, but - Im not a good person to whine to, especially cause I got my own issues . And I have helped as much as I can. But I also know she has no one in her corner, so I wish I woulda just kept my mouth shut and stayed in her corner. And I am still inner corner. as I texted her and said when and if she needs I will still make good on my offer to help her move "home".  Life.... 

  9. 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.

  10. Ever since we got back from our Colorado trip in June, Misha (our little schnoodle) has been missing her playmate who visited often while we were away.  The neighbor girl would bring her female shitzu mix over to play and Misha loved the company.   So, for Gary's birthday I decided I'd try to find a new lap dog for him since Misha prefers sitting on my lap and hanging out with me.   On Tuesday of this week we picked up a 6 month old chihuahua mix from a family who had too many dogs and were getting ready to move and couldn't take them all with them.   They had named her Lala, but we changed her name to Leila (pronounced Lay-la) because I liked it better.   lol    

     

    Wednesday morning, I took Leila to the vet for her first wellness exam and her rabies and distemper shots since the previous owners had not done any of the shots.   The vet checked her out and said she appeared to be quite healthy and she  was very cooperative during the exam.  We go back in three weeks for the 2nd booster for the distemper and then again 3 weeks after that for her third in that series of shots, spaying, microchipping and removal of a dew claw on back left foot.  Our biggest challenge will be keeping Misha away from her after her surgery so he doesn't accidentally cause her to tear open stitches.   We may have to kennel him a couple times during that time.   

     

    Gary is enjoying the cuddle time with the new pup and when she's not on his lap, she makes him laugh when her and Misha are chasing each other around the living room stealing chew toys from each other.   She sleeps on my bed at night while Misha sleeps in the kennel at the foot of my bed and she's been real good about going out to potty when he goes out, so that's a huge plus.  

     

    Sarah

     

     

  11. I have been using the bus for about 4 years now.  There are a few places I go on a regular basis, I know generally when the bus should pass by.  Yesterday was very warm, okay hot by Michigan standards (90+ degrees F 35 degrees C.  I usually go to the bus stop about 5 minutes before I expect to see the bus.  Yesterday was the same routine.  I was hanging back in the shade.  I was day dreaming about getting home taking a cool shower and just relaxing.   looked up as the bus passed by, at the estimated time I thought it would go by.  Darn it, right on time.

    Of course, I had a good laugh at my expense.    Given the choice of laughing or getting mad about the situation I put myself in. I chose laughter.  Who could I blame?  Only myself.  My day dream added 45 minutes to my trip home.  The best part of the delay, one of the bus drivers was playing real old Motown.  Early Michael Jackson, The Jackson 5, just to name a few. 

    I had to go south to go north.  Many do not understand, It is my reality and I don’t have an issue with it.

     

    Remember, Without Laughter, there would be tears or anger,

    Laughing is much more fun.  ;) 

     

    Peace,

    Jay

     

  12. Strokewife
    Latest Entry

    Red Rover, Red Rover Send A Caregiver On Over…

     

    The game Red Rover was a game I played during my childhood.  Often I, along with the neighborhood kids would get together and play this simple game around the summer holiday time. It did not require equipment.  The only objective was to call one individual to run over and attempt to break the barrier formed by the group of young individuals interlocking their hands.  If that individual did not break the barrier then that single individual joined the group forming the barrier. Each individual that broke the barrier kept having a turn until only one was left and declared the winner.  In our neighborhood we had to sometimes have more than one winner because there were a few boys that always seemed to break the barrier
    .
    As children I suppose we played this game simply for fun. There really wasn’t a concentrated purpose to increase our knowledge of team spirit.  Perhaps it did that without us realizing it.  Likely it wasn’t based solely on improving our individual strength.   Regardless of the actual premise for the game of Red Rover the goal seemed more about just having fun.  While we played this game for hours I never seemed concerned about time.  Those days of my childhood always seemed to be filled with fun.  I thoroughly loved my youthful years. Maybe it was simply because my whole neighborhood would gather during these holiday times like Memorial Day and we would eat, play, and embrace the festiveness of the time.  We just took time to enjoy being with each other.
     
    Certainly, when I was a kid I never thought about the purpose of Red Rover.  If my name was called I ran with all my might to break the barrier of the other children.  Although I always tried to break the barrier more likely I didn’t and I would then become part of the barrier. I never felt defeated. I just took on the role that was determined upon my turn.

     

    Three weeks ago, my husband, a 3 year, 2 strokes survivor was admitted to the hospital due to a grand mal seizure that rendered him unresponsive.  He had not experienced this kind of seizure activity before.  Well, he did in December but in a much milder fashion and we quickly went to the hospital.  At that time they seemed to conclude that he had a viral infection of unknown origin. He saw his Neurologist at the same time and he sent him through a course of test and blood work, which in turn started home therapy.  Somehow, my stroke survivor had aphasia begin after his hospital discharge in December.  While he improved with home speech therapy I still had discussion with the Neurologist of the possibility of stroke or TIA that didn’t show on Cat Scans.  We all seemed to agree that it appeared that he did but there was no solid finding. And, as I said earlier, seizure activity decided to jump on board. Thus today he is in a Skilled Care Rehabilitation Hospital to get back his strength, balance his blood pressure and continue his Physical, Occupational, and Speech Therapy while receiving medical attention.

     

    Since it feels much like playing the game of Red Rover I, along with my stroke survivor am running toward the barriers.  The difference this time of playing the game is I, along with my husband, seem to be breaking the barriers.  Sure all that surrounds care giving for a stroke and seizure survivor is still prominent.  I, for a while, am getting a little break from continual care giving since my husband is in a facility.  Yet, I do still have to keep up on them at the facility.  I have learned there is no place like home.  And, no one cares about my stroke survivor as much as I do. This current medical event really adds to my already very aware care giving self of the deficiencies still in the system.  Hopefully this is a barrier I will continue to break.

    So, as I hear the call of “Red Rover, Red Rover Send A CareGiver On Over” I reflect back to those days of my youth when it seemed to just be about fun.  My hope is that my stroke survivor excels and pushes past his current disabled boundaries breaking all barriers so that he can be declared the winner. And I through all this will be content with the idea that we are just having fun.
     

  13. 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... 

  14. 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.

  15. 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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  16. 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.....

     

  17. This year makes the 10 the year since William's stroke.  He is declining.  I mean he sleeps more and gets more confused often.  Cognitive abilities are declining.  I have not been bringing him to the pool.  He just does not want to go.  I no longer bring him out to eat.  He just gets too confused.  He constantly tells me that he just does not understand.  He is getting more incontinent.  So, I do more laundry.  He usually lets me put him in the shower.  But that is a chore.  He hates it.  He usually will take his meds.  But some days he refuses.  I feed him healthy stuff.  But, he does not have that much of an appetite.  He does enjoy the dogs.

    some days he will be alert and up.  But other days he just sleeps and then wants to be up all night.

    Life goes on.  He seems content.

     

     

  18. worryisamisuse
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    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?

  19. cypher

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  20. 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

  21. 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!!!

     

  22. 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!  :@#*%:

  23. 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.

  24. well, as you know itshalloween . time for a lot of trick or treat, and not only that but time to start on your schedule to get better and to work harder remember it never stop as long as you keep at it weither it be walking, or just exercise, as the nike slogan goes just do it . I'm rooting for you don"t give up just keep on keeping on just do whatever you are comfortable doing , for me it is walking still walklots not running as yet but I am sure it will just take time it is all about positive thinking so just get out there and get going

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    ON A NORMAL DAY SINce RETIRING FROM MY EDUCATION CAREER,  I WAKE AT 5 WHEN MY WIFE  RISES TO BEGIN HER WORKDAY I I GO TO THE KITCHEN, GET AN ESPRESSO AND OPEN THE LAPTOP TO SEE WHAT MAY HAVE HAPPENED IN THE WORLD OVERNIGHT.THEN ITS OFF TO THE GYM ABOUT 8,AM AFTER THE SCHOOL TRAFFIC IS DONE. I SPEND  AN HOUR THERE,THEN HOME FOR BREAKFAST BUT .BACK ON AUG 28 WHILE ON THE VERY BUSY 2 LANE ROAD HEADING HOME, I FELT MY TRUCK PULL HARD LEFT TOWARDS ONCOMING TRAFFIC, I WAS NOT SURE WHAT WAS HAPPENENNING TO THE TRUCK,SO I SLOWED TO 30MPH, THEN I REALIZED IT WAS MY LEFT ARM PULLING THE WHEEL OVER TO THE .LEFT  I REMOVED IT FROM THE STEERING AND DROVE WITH MY RIGHT HAND UNTIL I GOT HOME,THEN IN THE DRIVEWAY I OPENED MY DOOR WITH MY RIGHT HAND AND STEPPED OUT ONTO A LEFT LEG THAT DID NOT HOLD ME, FELL HARD ONTO THE CONCRETE DRIVE. AND  PANICKED MORE THAN  A LITTLE   I FORCED MYSELF OFF THE CONCRETE ONTO THE RUNNING BOARD AND TRIED TO CATCH MY BREATH, THEN WALKED INTO THE GARAGE AND TO THE HOUSE. I WENT TO THE SHOWER AND TOOK A WARM ONE TO RELAX. THEN I TOOK MY BLOOD PRESSURE TO SEE IF IT WAS HIGH,I FOUND THAT IT WAS 202 OVER 110. I TOOK 2 ASPIRIN ( SMART) AND CALLED A NEIGHBOR TO COME OVER, HE THEN SAW ME AND TOLD ME I NEEDED TO CALL 911. I ALSO TEXTED MY WIFE WHO SAID TO MAKE THAT CALL RIGHT AWAY, SO  OF COURSE,I DID NOW ,I WAS  QUITE WORRIED, BECAUSE I HAD MADE IT TO 68 YEARS OLD HAVING NEVER BEEN HOSPITALIZED BEFORE.   I TOLD MYSELF  I WOULD TRY TO PAY ATTENTION TO THE EXPERIENCE AND JUST RELAX, THE EMT CREW WAS SO PROFESSIONAL THEY MADE IT EASY FOR ME. NEXT CAME EMERGENCY ROOM, WITH A BUSY GROUP IN BLUE SUITS ALL AROUND ME. , I KINDA FOUND IT HARD TO BREATHE, ANXIETY SET IN, AND THEY OFFERED ME OXYGEN  AND A DRUG TO RELAX ME AND LOWER MY NOW 210/112 BP. NEXT I FELT WEIRD AND WAS TOLD I WAS STROKING,, HAVING ANOTHER TIA WHICH COME IN GROUPS OFTEN., I HAD AGREED TO GET A ROUND OF TPA, THE CLOT BUSTING DRUG THAT PREVENTS MAJOR STROKES, WHICH CAN FOLLOW A TIA, SCARY BECAUSE IF I HAD ANY BLEEDING INTERNALLY, THE TPA COULD TURN 'EVIL" AND KILL ME.

    IT WORKED HOWEVER AND I WAS TAKEN TO GET A CT SCAN LOOKING FOR BLOOD AND CLOTS IN MY BRAIN, NONE WERE FOUND AS REPORTED BY THE NEUROLOGIST, SO I WAS IN THE CLEAR FOR AWHILE. PHEW! I THEN HAD MORE SCANS, A FULL 45 MINUTE MRI, TALK ABOUT CLAUSTROPHOBIC! ALSO A CARDIAC SCAN AND NUCLEAR STRESS TEST, AS A GENETIC CANDIDATE FOR HEART DISEASE, I HAVE ALWAYS CARED FOR MY HEART, EXERCISING REGULARLY AND EATING HEALTHY. I ALSO TAKE SEVERAL HEART SUPPLEMENTS THAT ARE HELPFUL, SO ALL THET TESTS CAME BACK NEGATIVE FOR HEARET DISEASE AND BLOCKAGES, OTHER THAN AN ELECTRICAL ISSUE, A RIGHT BUNDLE BRANCH BLOCK WAS DISCOVERRED, WHICH CAN CAUSE ATRIAL FIBRILATION AND ULTIMATELY LEAD TO STROKE.  I also had a full body MRI.

     I SPENT 3 NIGHTS IN EMERGENCY CARE THEN 5 MORE IN ICU. I COULD HAVE BEEN RELEASED TO REHAB , BUT IT WAS THE  FRIDAY BEFORE LABOR DAY WEEKEND AND THE REHAB CENTER WOULD NOT ADMIT A NEW PATIENT. SO 3 MORE NIGHTS IN THE RECOVERY AREA OF ICU.  FINALLY TUESDAY ARRIVED, AND I WAS TRANSFERRED TO IN- PATIENT REHAB, 

    ON LEAVING THE HOSPITAL, I WAS STRUCK WITH HOW GREAT IT FELT TO BE OUTSIDE, IF EVEN IN AN AMBULANCE,

    THE REHAB CENTER WAS AnOTHER NEW EXPERIENCE, A SMALL PRIVATE ROOM WITH very SMALL TV, a BED, LOUNGE CHAIR ANDt wo  ROLLING TABLES .THIS WAS TO BE MY HOME FOR 3 WEEKS. VERY DULL, EXCEPT FOR THE THERAPY SESSIONS WHEN MY WHEEL CHAIR WAS ROLLED INTO THE GYM, FOR TWO OR MORE HOURS OF LEG EXERCISES, AND LEARNING HOW YO USE A WALKER SAFELY. ONE  DAY AFTER SEVERAL WEEKS I WAS INSTRUCTED TO TRANSFER TO A LOW MAT- TABLE , MY CHAIR WAS PLACED SEVERAL FEET AWAY, SO I STOOD AND WALKED,TO THE MAT. THIS WAS SUCCESSFUL BUT NOT VRY PRETTY. MY LEFT LEG WAS GAINING IN STRENGTH BUT NOT POISED AND IN GOOD CONTROL, I REALIZED THOUGH THAT I HAD ACTUALLY WALKED AND WAS QUITE PROUD OF THAT ACTION. THE OT THERAPY CONCENTRATED ON MY LEFT ARM AND HAND USING VARIOUS TECHNIQUES INCLUDING E-STIM, ELECTRONIC MUSCLE STIMUATION, WHICH AMAZED ME TO SEE MY HAND AND FINGERS MOVE ANIMATEDLY. I ALSO HAD SPEECH THERAPY TO IMPROVE MY VOICE CONTROL, AND WE SPENT SOME TIME SINGING WHICH FOR ME WAS A MAJOR PART OF MY LIFE PRIOR TO ALL THIS.

    I KNEW THAT THE POSSIBILITY OF REGAINING MY GUITAR PLAYING ABILITY WAS REMOTE AND WELL INTO THE FUTURE OF ALL THIS. DEPRESSING, BUT MY  REALITY NO DOUBT.SINCE A STROKE CAN MAKE YOU VERY EMOTIONALAND  QUICKLY, I WOULD BE OVERCOME WITH CRYING JAGS WHEN  I BECAME AWARE OF THIS REALITY, AND THESE ONLY ABATED WITH A PRESCRIPTION ANTI -DEPRESSANT PRESCRIBED FOR ME. THE THREE WEEKS DRAGGED ON WITH PROGRESS BEING HARD WON, AND MANY  HOURS SPENT IN MY BORING ROOM., ALONE THANKFULLY I HAD MY LAPTOP BROUGHT IN, AND FOUND THE STRROKE SUPPORT ONLINE NETWORK, WHICH GAVE ME MANY INSIGHTS INTO WHAT OTHERS HAD EXPERIENCED WITH HAVING A STROKE AND AFTERWARDS. I ALSO STARTED READING A BOOK ON RECOVERY FROM STROKE WHICH WAS VERY EDUCATIONAL. I SAW THE POTENTIAL AND MY OPTIMISM INCREASED GREATLY.

    I JOINED AND EAGERLY READ THE POSTS FROM OTHER SURVIVORS. I RECEIVED A NUMBER OF VISITORS INCLUDING A FEW OLD FRIENDS I HAD NOT SEEN IN QUITE SOME TIME. MY WIFE CAME EVERY DAY AFTER WORK , OFTENROLLING ME OUT TO THE COURTYARD FOR SOME AIR AND SUNSHINE. I LOOKED FORWARD TO SEEING HER EACH DAY, AND SHE PREPARED TO BE MY HOME CAREGIVER SOON. I WORRIED ABOUT BURDENING HER, BUT SHE WOULD NOT HEAR ANY OF THAT, MY SONS BOTH CAME TOO AND ONE STAYED THREE DAYS, SLEEPING ON THE COUCH IN THE ROOM I HAD. HE IS  STRONG YOUNG MAN AND VERY POSITIVE , SO HIS VISIT WAS GREAT FOR MY MOTIVATION. I RELISHED THE TIMES I HAD ACCESS TO A HOT SHOWER AS THEY WERE FEW, BUTIT WAS WONDERFUL.BEING CLEAN AND  FELT GREAT AFTERWARDS. 

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