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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. An alarm clock rings in the wee hours of the morning before sunrise has made an appearance.  Fred the Baker rolls over and sluggishly stops the loud continual sound.  With his eyes forcedly wide open he swings his legs out from under the covers and sluggishly shuffles to the bathroom where he changes into his work attire. Still moving in slow motion out the door he goes only to reappear at a bakery.  All during this maneuvering to work Fred repeatedly says, “Time to make the donuts,” up until customers arrive in masses, where he greets them eagerly with a wide variety of those glazed circles and a smiling face.

     

    Michael Vale was a classical trained actor in New York City.  He had roles in many television shows, Broadway plays, and movies during the 1960 to 1980 decades yet he was best known for his role as Fred the Baker in the infamous 1980’s commercial for Dunkin Donuts.  Mr. Vale played that sleep deprived mascot role for over 15 years. When he retired there was a parade in his honor and a declared free donut day. Upon his death in 2005 the company adorned their donut packaging to honor him with the words he made so famous.

    Some how as a Caregiver for 4 years to my stroke/seizure survivor husband I know that there are many mornings in which I get up the same way as Fred the Baker. Instead of donuts my mantra is more like, “Time to be a care-giver.”  Now, I am not a classically trained actor. The role I play 24/7 is only infamous to my stroke survivor. There is no concept of retiring as a Caregiver nor is there a thought of a declared free care-giving day. Certainly, there are means to acquire such help and there are a few friends and family that step in to assist for a few hours here or there but mostly there is not a care-giving parade passing by my way.

     

    The journey over the past four years has been a very rocky and mountain like terrain.  Each day has brought it’s own challenges.  I have become accustom to daily unplanned mishaps. As well, I do not beat myself up if I don’t get everything done on schedule. Basically, care giving is the hardest job I have ever encountered. And secretly, there are mornings I give my husband a donut because it is easier than whipping up a heart healthy meal. My stroke survivor has not bounced back to a level of recovery like many do. The seizure activity or short-circuiting of his brain has created cognitive decline. Which has made it hard for him to do most things in a timely fashion. He is listed as full assist by all recent assessments. In turn, I am the one fully assisting him. I have watched him slowly digress with communication and dialect to a point he stays quiet.  He sleeps more than he is physically active. Mostly he no longer wants to get up or go out. Even still, we still greet each day with hope and a semi smiling face.
     
    To be clear, I am not trying to advertise for Dunkin Donuts, more so I am merely using the old commercial as an analogy of how I, the caregiver, feel more times than not.  When I started the care-giving journey back in 2015 I eagerly jumped in with both feet. I researched, prepared, and acknowledged all that was expected of me.  Vowing to be an advocate for caregivers and stroke survivors I ran full speed ahead. Today, my pace has slowed down. Don’t get me wrong, I still advocate for caregivers while researching the latest in studies.  Yet I feel not much has changed in the realm of support to caregivers and this makes me question why.  

     

    Without being too brass it just seem like stroke survivors are treated for an allotted amount of time as deemed appropriate by insurance then simply sent home with no concern to how the caregiver will manage on a day to day basis.  Many a conversation I have had with doctors, therapist, and programs as to the deficiency in training and assistance for the caregiver.  I am astounded at how most in the field of rehab or brain injury do not have knowledge of resources available. Often, I have found more information of things like support groups available than the people being paid to know.  Of course, great help is a separate issue from any financial obligation that accumulates.  It seems it always goes the route of services available for the stroke survivor that may have out of pocket expenses. The caregiver has to find means to continue their life while incorporating the role of seeing after a stroke survivor.  In my case, I still work but had to cut back greatly to attend to my stroke survivor.  Thus, I always feel like I am moving in a zombie state of mind.  I guess what I am trying to say in noting Fred the Baker is I find it interesting that a professional actor can go down in history for an advertising catch phrase implying how tiring it is to prepare donuts. Meanwhile there are caregivers all over the world working relentlessly without any kind of notoriety. Somehow, the scale seems heavily unbalanced.

     

    In truth, my dear readers, I care give because I love my stroke survivor and know him best but it would not be a job I would apply for outside my home. So as I end my thoughts I humbly stand today applauding to honor each of you whom are Caregivers.
     

  2. HostTracy
    Latest Entry

    It's been a while since I have written. Things are changing...some good some not so good but I'm rolling with it. I am happy to say I have started to volunteer here on Strokenet as a Chat Host since the passing of our friend Denny. This is for you Denny and all the other great members here at Strokenet. I hope I do it justice. So far it's been a joy and I have caught back up with some chat friends I haven't seen in a while. I welcome any of you to join us in Survivor Chat Room #2...my schedule is Monday 3-4 EST and Wednesday 3-4 EST but there are many other scheduled chats. Pull down the chat chat drop down list at the top of screen and check out the chat schedule.

     

    Last time I blogged, I think it was the beginning of 2019. I talked about my past meeting my present. Things in that area have been calm since and no pressure. I'm glad. Now I will update you on my dad and his lung cancer journey that started last year. He had a scan in December I think and was told the cancer is gone. I know he felt so much relief...we all did. Then in early January his regular Oncologist called (the Oncologist that read and gave my dad the good news was not his regular Oncologist...he was on vacation). He started apologizing first before anything...more than once. That is when he told my dad that he wanted to look at his latest scans himself and that they had missed a new cancer spot on the opposite lung. He did tell my dad that he would have to have a biopsy to be sure but he was pretty sure. After the confirmed biopsy my dad was told it was stage 1 and not near a lymph node like the first and that he would only need radiation 3 times. This time would take longer and would be stronger and he would be strapped to the table for accuracy. It was a hard 3 treatments...painful because of the length, being strapped down and having a larger dose. He seemed pretty depressed. Since then we have waited until the newest scan last week. He has had pneumonia in between those times and was hospitalized but thankfully feels better. My stepmom told me that his newest scan shows a "cavity" in a new area. I put cavity in quotes because they are not sure what it is...a left over area from pneumonia or a new cancer spot. He will have it tested soon. I will update when we know more. Until then...just helping to keep his spirits up.

     

    I blogged about winning my Disability case and 1st having Medicaid for a month and then Medicare and now Part A, B, and D. The Medicaid was backdated to June 1st  2017 and my Medicare to January 2018. So I have been busy working on past bills and collections. I've even sent my medications in since my mom paid cash for these (I could not). Having trouble though...some Medicaid says they have determined it not medically necessary, some is not approved because I got more than 30 days at a time (90 day Rx), some are even when i was hospitalized last year with a really bad chest infection and severe asthma and on oxygen (deemed not medically necessary. 😤 GRRRRRRRRR  I am being penalized because I got 90 day Rx's when I could to save my mom money....I had no idea I would have retroactive Medicaid with ridiculous rules. How could I have known. Besides those 90 Rx's were the same as 3 30 day Rx's. 🙄 So it's been a sort of exhausting battle...I'm still fighting.

     

    I also had positive dreams of being able to get my own place when I won. However, I can't afford housing on my SSDI income alone. I am going to have to apply for our state's section 8 voucher program to help me. There are 4 areas in TN and each opens on the "waiting list" for 1 day.

     

    EDIT: I had stopped writing this blog a bit ago so there have been some changes. First, I am finally on the housing list (pre-ap list)...so happy and breathing ok ready for the next step. I am truly enjoying being a part of the volunteer team here and hosting some chats. Thank you to all of you who have joined in and please I invite anyone who would like to come hang out (check chat schedules). I am now doing cognitive behavior therapy once per week via the internet. It's going great so far. 🙂 I'll just end this blog with a hug and thank you. Things are changin...some good and some not but I am well. Looking forward to the rest of March.

  3. Still here, still surviving, sometimes by only a thread, but we're doing okay.   We finally sold the Scottsdale mobile home the end of December, and were able to get Gary's bathroom redone for a roll-in shower.   I put that job off way too long and was worried my back would not hold out much longer trying to get him in and out over that tub to shower him.   A $3200 job ended up costing nearly six grand by the time I fired first contractor and had to replace him with a handyman to finish the job.  Technically, I should have had him rip it all out and start over, but I really couldn't afford that and didn't have the time or patience to take the phony contractor to court for reimbursement.....I was lucky to get him to reimburse me $900 to pay the handyman, in order to get the job done.  We had the doorway between bedroom and bathroom widened to 36 in. so it is much easier getting through with wheelchair and I can roll Gary right up to grab bar in shower to pull himself up, turn and sit on his shower chair.   He's lost a lot of mobility and some cognitive ability through all this, but we make it work.  

     

    It's been nice having my youngest sister and her husband in AZ again this winter doing the snowbird thing with their motor home.  They have been across the country and back over the past couple years with that new motor home, so are now planning on buying a house south of Tucson and moving down here by Fall.   This week they will be in AZ City, which is only about 25 min. away from us, so we will meet up a few times next week and they offered to sit with Gary if I need to get out while our caregiver, Carmen is on vacation to visit her son in Colorado.  I may take them up on the offer and go get some acupuncture in Casa Grande.  I've had those free coupon offers laying here on my computer desk for months, but never had the time or opportunity to use them.

     

    Our daughter-in-law from Colorado was in the area for about 10 days in February for the grand opening of the new Ziggis Coffee in Chandler.  She's an area manager in Colorado and travels to the new openings to help with set up and grand opening.   Her original travel dates were pushed back by delay in opening, which turned out to be a good thing as she ended up being full time caregiver for our oldest son after his back surgery the end of December.   He had two surgeries for spinal stenosis.   I talked to him yesterday and he's very disappointed that progress is slow and he's still experiencing numbness all down left side from butt down to feet, and his right foot is numb.   He's been on short-term disability for over 3 months and should have been cleared to go back to work this month, but the pharmaceutical company he works for is closing their Colorado operations, so he no longer has a job.  He says he can't be on his feet more than an hour or two before his back spasms start and he has to sit again, so not sure if he'll even be able to work again.  Since his wife returned home to Colorado she has also been sick with some sort of infection related to her colitis....so not doing well.   Please keep them both in your prayers.   

     

    I'm hoping to get a new computer in the next few weeks, then can start adding people back on facebook.   Had some problems with computer virus pop-ups, and lost a lot of contacts.  

     

    Sarah

  4. I was diagnosed with thyroid cancer this morning, my melanoma specialist Prof Saw will find me a throat specialist who can see me locally but who operates in one of the Sydney hospitals.  Then the throat specialist will liaise with the neurosurgeon who wants to operate now on my brain aneurysm to see who gets to operate first. Not a good day.

     

    I wrote that to a few friends yesterday. I was in shock, I had gone to the doctor to discuss some options and he read out the biopsy report and there it was, the biopsy had shown a tumor in the node that had doubled in size. A bit of a surprise as the last report a year ago had said the nodes were all benign. But my mother had had her thyroid out in her fifties so I guess it is familial. Dash it all. Another operation to endure. I know it is my age, for some  of us reaching 70 is one bridge too far.

     

    So it is a waiting game again. I will hear from the melanoma specialist again with the information on the throat specialist, he or she will get in touch with me, maybe get some more tests done and then book me in for an operation. It would be nice if I had a choice but I don't. Remember I had the other operations in order to see my grandkids grow up? I guess the same applies.

     

    The aneurysm in the brain operation is more serious of course, no laughing that one away. But an aneurysm is a small unexploded brain bomb and it is either get it  tied off or live with the uncertainty of when or where it will detonate and blow. That is indeed a dilemma. So I will have to screw up my courage for that one. It is a pity somone else couldn't make the decision for me but I am still in my right mind so the decision is all mine.

     

    So how do I feel? Not confident that I have a future. I say that knowing the side effects of both operations, the downside of doing hospital chaplaincy. Some people come through operations so well, recovering fully, some people don't. Either way it is a long recovery and life will be different to what it is now. But that is the good news in what may be an end-of-life experience. I say that because one of my younger friends (58) from my stroke recovery group died this week after two massive bleeds, one on the left side of the brain  one on the right side. Life is uncertain.

     

    Where does my Christian faith come into all of this? I don't know. I have always known life was uncertain, I was a caregiver for all those years and watched Ray have strokes, falls, fits and seizures. I saw how very brave he was and how he struggled back each time. I want to be as brave and determined as he was. I want to go into the operations knowing that things can go wrong but be brave enough to be able to take that chance. That is what living by faith is all about.

     

    So if I write a few down blogs or put comments on Facebook that don't sound like my normal cheerful self you will know why. The rain falls on the just and the unjust alike so don't feel sorry for me or worry about me. But do keep prayers and positive thoughts in your mind for me for the next couple of months as I deal with some of these awkward decisions. And help me to keep smiling when there is not a lot to smile about please.

  5. I so look forward to my Sundays with my AHAs with super soul sunday & being married to my very spiritual, practical soulmate, my life is very rich with all ths AHAs. Today oprah while interviewing bradley cooper for his role in star is born as actor, director said "Art is kinda form of prayer", my husband quickly added Any work you do is a form of prayer, & AHA light bulb went in my head, its so true any work we do, if we do we should be doing as form of prayer, such that even if its volunteer work or you are working for money, or doing duties as mother & wife, it should be done as our prayer to God, & we try to do our best with our capabilities & not get attached to results, will give us most satisfaction in life

     

    Asha

     

  6. I guess I haven't anything fantastic to say-- I just realized it had been so long since I checked in . Its been a cold LOOOng winter in North Dakota-- although sounds like it has been for all in the USA.... Dan is doing alright--- the fiascos of the nursing home continue... He taught the aids and admin a lesson . He is very OCD - he asks the staff to take garbage out with them when they leave the room. They did not, kinda a  passive aggressive thing with the staff . apparently it got left overnight, so the next day he flushed the garbage down the toilet, plugging the toilet. So they take the garbage now when he asks. Typical Dan -- Lots and lots of staff VS Dan power struggles . I just chuckle - anyone fighting with a brain injury - aka stroke . Is gonna lose. Hope all is well... NancyL

  7. 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. 

     

     

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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.

     

     

     

  8. 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

  9. 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 

  10. 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.     

  11. 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.

  12. 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.

     

     

  13. 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.

  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!

     

    No automatic alt text available.

  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

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