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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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  • HostSue

    Living on angel time.

    By HostSue

    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. Every now and again something jolts me back to reality, today it was the post on Facebook by Steve Mallory announcing that our friend Denny (Dennis Jeffries) had died. Denny and I talked frequently during my years when he was a chat host on Survivor Chat and I was chat host for Caregiver Chat. He was also my friend on Facebook. Like so many of my friends on Facebook and Strokenet we never got to meet in person but nonetheless we were friends. In this modern age this will be so for many of our friendships.  My  heartfelt condolences to his beloved wife Peg and their extended family and all those who knew him and valued his friendship.


    As I minister to the older church members in my own church and others in the organisations I belong to I am probably over familiar with death but never inured to it.  I know each death robs us of a piece of our history and breaks down some of the bonds between us and others. All we can do is to remember those friends who have passed,  remembering why we liked them, what we shared with them,  remembering all that was good about that particular person and the ways in which the friendship enriched both our lives. We also need to remember those they left behind.


    I have just had my daughter and her family here for the weekend. Not her husband as he had injured  his back trying to start a stubborn water pump so he stayed home for some bed rest. It was only a day's notice so it was unexpected but turned out to be a really fun time. My grandson  Chris starts University this year so is a grown  man now, his sister Naomi is 14  so quite a young lady so it was funny to see them playing with the toys Alice aged six had got out to play with. The Nintendo Wii got a bit of a workout and more so on the second night when Pamela and the three Adelaide cousins joined us. I guess that is when I realise my house is small when  five teens and near teens are fighting to see who will be the challengers in the new Wii games.


    I do so enjoy having my grand children here, every  time I see them I can see the changes in them. With Trevor and Alice's visit the first two weeks in January and then all the others last weekend I have been so blessed with the amount of time I have been able to spend with them. The Adelaide kids are going home in a week's time to start back at school, they are  all doing well according to their abilities. I love them all and want the best to happen to them but have no illusions about them. Like Ray and I they will have their own struggle with life.  They know Granma prays for them, but only two fully understand what that means. 


    Summer has been very humid so it is out shopping etc in the morning and home in the afternoons. I have to keep hydrated and remember to take some time with the affected leg elevated. I have just lined up all the appointments and tests for the second week in February prior to seeing the melanoma specialist, with more tests before I see  the neurosurgeon in March. I figure this is all for my good, remembering especially that this is prolonging my life so I can look forward  to seeing my grandchildren grow up. I have felt the negative effects of wearing the body stocking toes to waist  bevause of the humid weather but try to remember that too is to ensure I live as full  a life as is possible.


    On the whole life is good and I have many blessings to count. I have a roof over my head, food on the table and many good people behind me challenging and supporting me. At my age I know that as long as we have love in our lives we are truly blessed.



  2. I have a sinus infection,yeast infection,fungalinfection,and need to use a bipap machine but cannot breathe with my nose right now....


    Nutshell of misery is enduring the virus that I am hosting in my body


    My body that feels constant pain in my right leg for no reason except just because ...and it is not a belly ache as some mock.  NO it is burning at the stake pain, a live amputation. I Do So have a good pain tolerance!!!  I have been through labor and childbirth and a C section. Ok boys try being sliced in half to pop out a baby and then being stitched inside stapled outside and then pop a baby aspirin so I can breast feed safely. And foolish women sing the joys of experiencing the natural experiences so I did I until those double peaking contractions that failed to do much.....yes pain and me are old buddies.


    This nerve pain is childbirth Godzilla steroid style. It is dental pain wile your finger is stuck in a light socket. Ok....so I am getting an implant to turn it down....does that prove it is a not normal pain yet???


    So then my incontinence issue is not a thing except the stroke added more weakness so I wear a leak prevention pad....my ego identity is involved here...


    So when I got to snf, they did not offer pads,but had pull ups or diapers. It took  no time to love pull ups. Easy convenient yet often leaky but ok I missed undergarments but never had to worry  about lost laundry....

    But the home does not proedvide pull ups now

    I cal)led the ombudsman twice.




    She said the home is obligated to provide incontinence supply...and it did. Maybe not what I wanted but they did not have to provide pullups or pads. Not even maxi pads.


    So I spoke to my PC, she understood and sent an order to the medical supply Co and......I was happy until it called me saying they do not deliver to nursing homes..they provide stuff.  Ok.


    So I will.


    Does any one get this get me?


    Should I be taken at my level

    ...but they say     all the same....


    No one comes to change me

    See they said i am independent not incontinent.


    What dictionary are the using?


    I cannot talk anymore to statues.


    But I am sitting in a diaper.

    I am here. 

    It falls when I walk.

    Comes off when I pull up my pants

    It sags to my knees and it is dry.


    So they came in and said you need larger ones. I said I am swimming here. They brought bigger ones that are prettier color but when we put it on it was nearly a one piece bathing suit.  So back to other one. 


    I will adjust to this.

    As I always do.

    But I  fight to not be in a wheelchair. 

    It hurts to walk so bad.

    When toilet was out in my room i used commode. Not a bed pan.not a diaper.


    So they told me to change myself.

    I need coordination.

    I cannot do it.


    So I will purchase some myself for outings but here I am in diapers.


    Why is my identity fighting this.

    I am having problems yes. 



  3. As all of you aware by now I love watching Oprah's super soul sunday series on her OWN channel. I love listening spiritual awakening books or discussion, since I always learn something new from them even if its repeat. This Sunday was no different, when facebook COO sheryl Sandburg talking about her book lean in. Book she wrote after sudden death of her young husband while  exercising  on readmill  while family was vacationing in costa rica.  She talked about how post traumatic growth can also occur in person instead of stress after traumatic event happen  in person's life. I fully agree with that statement, but I also feel having  solid support system around them helps, she talked about how gratitude helps, I also feel having reason bigger than yourself also helps to pull yourself together, & given enough time has passed also helps. you can see how things finally have unfolded in your life & seeing everything fall into place again more beautifully, you can see that beautiful post traumatic growth she was talking about.  it was one of my AHA moment of Sunday.

  4. I think 2019 could hold so many happy beginnings. I'm excited, a little scared, feel blessed and look forward...something I haven't done in a long time. I have never lived alone! Believe it or not I'm 47 and have always lived with someone else. For the first time ever I am really looking forward to living with just me. 🙂 (and Kitty) I'm trying to take in all the new things happening since I was approved for disability. SSI, Medicaid, SSDI, Medicare, retroactive benefits...it's all a lot. So I'm taking it one day at a time...thinking about planning...trying not to think too much lol. Of course this all comes during the holidays which for me seems to be awash with anxiety this year. It's different. My brother passed this year, it's been a year and a half since I've been single, my daughter is having a rough time financially and emotionally, and I feel a weird sense of alone. I know I'm not...my mom, stepdad, dad, stepmom, sister and brother in law, his 4 kids (my nieces and nephews), my sister's kids (niece's and nephews), and all my extended family. I am far from alone. I have secrets though, things I don't talk about often. When I was 3 days old I was adopted (my birth mom was my dad's sister [I call my adopted parents mom and dad btw] and my birth father was a family friend). Both have passed several years ago. My birth mom of a massive heart attack...my birth dad of a brain tumor. So I guess some of my history will always be unknown. This is the first year I have reached out to my two half sisters and something happened that scared me (not good for PBA ); so I haven't reached out since. It's not my half sister's fault which makes me feel bad that I had to step back but I did what I had to do. My whole family including my two half sisters knew about me (the truth). I grew up completely bonding with my family. They are my dad, my mom, my sister, my late brother, etc. etc. My half sister's, however, have emotions about me. So do my dad and his other sister. Recently my aunt and one of my half sisters said how my birth mom was never ok after she gave me up. When I was grown with my daughter around 2 at the time she came to my dad's while we were there. She couldn't stay around me and she wept quietly outside. My dad even had wet eyes and there I was not knowing how to feel but there were no tears. When she passed I was with my then husband and Hailey on our way to Disney World. So when I wasn't at the funeral it bothered my half sisters. It's been something I haven't been able to deal with since then. I did reach out this year...after my brother's sudden death. I just kept thinking "you never know what life can bring you the next day...no regrets." It was a moment...I wonder if it sounds horrible that I just say that. My stepmom had to say something to my dad's sister about saying things to me like "I really feel that Betty (my birth mom's  name) mourned herself to death over you. I think giving you up had a lot to do with her death." My half sister says the same thing to me. Well how the f<¿|| do you think that makes me feel. Not only have I felt like I don't belong anywhere at times but to add the knowledge of another person grieving themselves to death over me. It's just too much. I was fluffing 3 days old...it does not help me in any way to know that another made a choice about me and it was a horrible decision for her sanity. I am not responsible period. But these things hurt me inside and I tend to place that pain (whether I should or not) deep down in me. So it will visit me at moments. I don't think my mom, dad, sister, etc. know I feel this way. Inner demons...I suppose we all have one. So Happy New Year and pray this 2019 year brings happiness, healing, direction, and prosperity. (((HUGS)))

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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.




  5. 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

  6. ksmith
    Latest Entry

    Well, I did a fast trip to Florida to attend my first grandchild gender. Apparently, I was the ONLY one who didn't know. But it was wonderful. I cried for I was looking at my baby and knowing he was a man and a daddy.  They had a die dust bag they put under a truck tire to do a burn out, spinning a tire on concrete, which made a TON of smoke and burning rubber smell/ YUCK .


    The travel down was interesting, to say the least. I flew from Philadelphia to Dallas/Ft Worth.. first. ( all in saving money and I forgot about the time difference (( they are 1 hour behind us)) to dis board, wait for roughly 20 mins and re board the same plane to go to Orlando. Oh yes, this was a  Disney flight.  I am so glad I down loaded pod cast to listen to. So then exiting the Orlando airport, which is massive, but I normally walk across the bus lane and get my rental car. Again, in the spirt of saving money, I went off site. Ok No biggie, I received and email saying I will get a shuttle to the rental lot. Did I forget to say it was like summer. 82 ( kinda chilly for Florida but summer for NJ ) in jeans and standing out side for the shuttle... and waiting... roughly 45-60 mins waiting and I called them asking if someone would please come. 25 mins later the shuttle came, and we drove for about 10 mins. Holy cow. But in the long run, things don't go as planned but it's an adventure. Finally got the car and headed out.  Seeing at night and raining,,, it was a journey. I literally drove to 2 mins away and it was to much for me so I called my son  and he and his girlfriend met me and he drove me to their home. 

    Ashley, my son's GF, was kind to give me her bed, which was made in heaven. Her family, now my family, are absolutely wonderful. My ex ( my son's father & his GF) made up their backyard into a beautiful party site. 

    All I can do is smile.  ( the picture of Ashley doesn't do her justice) she is lovely 

  7. 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.     

  8. Ok - input appreciated- especially those who have followed me for years - literally !. Its taken a long time for me to settle down and into my "stroke widow" role. I was pretty young when it happened to Dan and I had ambitions of my own- all flushed when Dan stroked. So after the 4 years of caring for Dan ended with me in the mental institution and him in a nursing home - I am debating bringing him home. Why - Im doing virtually all his cares and still paying the bill for his care. Im finding, I may, in a few years down the line end up in financial issues if I continue to payout for his care, and even though I have a great boss I do not earn but barley a 1/3 of my previous - before stroke salary.

    With all the constant care and paying attention needed I could never commit to a job like I had previous . The job I have now accommodates , don't pay well, but is very accommodating.

    And I feel the actual want to care for him again in his our home. I feel most of the "RUN" has been taken out of me. Im not running as much , given up the alter life I tried to have.  Of course this will involve some planning and work , by no means is this gonna happen anytime soon. The home I have now is not handicap accessible , can not do long term care in it. So I would have to look at homes AGAIN --again history is repeating itself.

    So Im playing with the idea. Have not and will not tell Dan anything as I have not made a solid decision. I kinda feel like I don't want Dans story my story or OUR story to end in the nursing home YET. I recognise I may be repeating a pattern, but the pattern of everyday Nancy to the home to work to the home --- then to my house to sleep and repeat and paying a institution to do what I do isn't working either....

    So for fun people digest this..... Yesterday the home had changed Dans bedding - YAH !!! so I notice the blanket on the  one side the visible is hanging really low , so I figured I would pull his bed out and even out the blanket. I pull out the bed and his blanket on that side has like 2 feet on the floor.... Im like WTF ?? so they took the rectangular blanket put it on the bed wrong ( side ways) and figured the extra would just go away... I laughed so hard.. Went and talked to his nurse supervisor and was like - I don't know who special ed is that made that bed , but man if you can't do the most basic simple and easy job in the whole place - I pity the residents.  I wasn't adversarial and not even angry - just the  daily shenanigans of the home is so frustrating. They are having so much trouble as are all the homes hiring that a "warm body" is pretty much the only qualification.

    I just don't know that the home is the best for Dan at this point. Im sure he'll end up in a home again, but I guess Im willing to try again... but the decision is not made and a lot would need to happen if thats the decision. Im not in a hurry --- and yes to my long time stroke net friends please chime in tell me what you think. You know my history, you know ME and you know the STROKE ISSUES we all deal with daily.---- Nancy

  9. 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.

  10. 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.



  11. 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.

  12. 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.  





  13. 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.

  14. 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... 

  15. 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.

  16. 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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  17. 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.....


  18. 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?

  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