LadyRose

I often dream about doing the things I once loved but can no longer do... like walking on a sandy shore and holding and playing with babies. I always have a happy feeling when I first awaken from these dreams and then reality hits me and I'm ruined for the rest of the day...I suppose it's good that my dreams are positive, to counteract my negative awake thoughts; maybe it's the brain's way of helping us survive?

I hate to see/hear this! We had so many things in common.......................please don't just drop off of the face of the planet!

 

Wishing you some peace!

I'm sorry, Tina;  I'm too depressed and angry &  I've had enough with talking about the f**k**g brain accident.  Do you have my email address (I can't remember if I had given it to you)?  If so, feel free to use it.  If not,  here's a "contact me" link on my Google profile here:  https://www.blogger.com/profile/00504286188405461691

Best wishes, dear.

SandyCaregiver:  I agree, attitude is everything and I'll be the first to admit that mine is not good..but that's just who I am... however, itdoes seem that you to got the point I was trying to make, that is, full recovery would mean (to me) being able to return to doing everything that I once could do, but I think with brain injury, recovery often means  doing things in a different way and finding pleasure or joy, where one can.  Thak you for your comment!

Hi Rose! Haven't "talked" to you in a while! It is amazing to me how much we share and are a like!  As a matter of fact, I know you don't do Face book, I am on there a lot. I belong to a couple of stroke groups and APS groups. (antiphospholipid antibody syndrome) the blood disease that caused my clot then stroke. I just asked a ? similar to your question.

 

Seems like people are always posting about what they do and I can't do any thing like they are doing! Like going to a park and walking a mile! I do well to go down my back steps and 5 feet to get in my van!

 

My 2 year ann. is coming up also (Aug. 16) and I have been told by 6 doctors what I have now is it, things might get a little better but not much.  I don't bend my knee either, I swing out my leg. I have done ankle pumps out the butt, but without my AFO it still rolls like crazy. The only time I don't wear my afo is from bed to my bathroom, like 50 feet and that is getting harder and harder, my toes are spastic, I have been having my husband or one of my girls dress my lower extremeties  while I sit on the bed.

 

I can lift my left arm, I can open and close my hand, but what good does that do?? It is still not functional and can't really do anything.

 

My left side is still numb, or like I call it--dead. It has no sensation, no cold or hot feelings, anything registers as light pain.

 

I am some mobile but at home I am in my wheelchair most of the time. I wash dishes, sweep the kitchen cook a little, etc all from the wheelchair.

 

I think therapy is just for movement and to get us "adjusted" to our stroke bodies and what we have to live with.

 

Lately I have just tried to work on acceptance and thinking it is what it is.

 

Sorry I couldn't be more help, but I just had to respond because you sound so much like me! 

With regards to your ability to lift your arm and open and close your hand:

Well, I'm no expert, but I would think that this is enough to allow you to practice meaningful movements and tasks, such as brushing your hair, reaching for, grasping and lifting of a drinking vessel, etc., and by doing this over-and-over ad nauseam,  you can create new pathways in your brain to make the movements second nature, like a child learning new motor skills.

I'd be happy to have even those limited movements, at least then I would probably be able to hug my husband and son or at least have some hope that I could do that again with hard work.

I'm at the point of learning acceptance too but my husband and son both refuse to believe that there's no more that I can do  and explaining myself to hem only upsets all of us to the point of exacerbation!  I'm so sad about my life as it is. :-(  If there were experimental surgery to repair my brain damage, I'd probably volunteer to try it... What I wouldn't give to just have a little spontaneity back in my life and to give my husband a break from all his stresses.  Currently, I just feel like a waste of space and resources.

So sorry to hear that your mother has passed; I agree, losing your mom is tough, no matter your age.  I lost mine when I was 45 and even now,13 years later, I miss her every day and probably even more so since I had the stroke because she, herself, died from strokes.  I must say, she lived with more dignity and courage in her living with her paralysis  following her first stroke 18 months prior to her death than I feel I have done in the 18 months since I stroked.

Tina, I also hate the one-handed typing but If you have a tablet or smart phone, then I recommend getting the app called Message Ease.  I find it to be a great one-handed keyboard tool!  

Rose, you are doing well, peeling the clementines one handed is another small victory for you. And enjoy your snuggly moment, not a lot of those in our hot summer this year but a couple of cooler nights because of rain remind me again of that pleasure.

Sue, you must be in the southern hemisphere..My area, in New England, USA, is buried in snow with very cold temperatures!

Wonderful story!  Congrats to the whole family!

Thank you, Ed!

Great post title, Ed!!!

My goodness, this seems to be quite a prevalent problem among stroke survivors.. I've blogged about it numerous times myself, most recently today:  I'll be having my sleep study next week but since learning about the scar-tissue in my brain as being a possible cause, I'm remaining a little hopeful  that the study will provide ideas to treat.

...all I want for Christmas... is sleep,

:-)

Rose

Although I am not the survivor of the actual stroke -- I am caretaker and wow o wow -- I am seeking sleep as well ( the real kind ) -- I am so glad you found a piece of it.. Dan my husband the survivor gets lots of sleep but it is not restful and he twitches most of the night -- making sleep for both of us difficult ….. hopefully the med increase has helped , and keeps some real rest coming you way !!

Thank you, dear, I wish the same for you.

I can understand , as a care-taker, your need for good sleep also...you know, the stroke may have occurred inside your husband's brain but it 'happened' to both of you.  I know, for me, nothing is as it was, our world has been turned upside-down and shaken (like a snow globe).  My husband (and caretaker) isn't sleeping well either, he works full-time (with 2 hours of commuting daily) and has physical ailments of his own, for which he was going to schedule surgery but didn't because.I needed him after the stroke.  Plus, I'm always cold and want lots of blankets; he's always hot and sweaty and wants the ceiling fan on without blankets...sad as it may be to do so (even to say so), twin beds may be in our future.

Massive fatigue is a quite common side effect of strokes.  My husband had his first mild stroke in 1990, went back to work six months later, drove to work, drove home, collapsed in a chair, I woke him up to eat, he had dinner and went to bed, repeated that five days a week. On the weekends he managed to get through the morning and slept each afternoon.It certainly restricts your life.  it is part of new research here in Australia so let's hope we get a result as it is what is stopping a lot of people from enjoying life post-stroke.

 

Good to see you had the energy to do another blog  :welcome: .

 

Sue.

Thank you, Sue, I believe you commented on my first post about fatigue, as well.

Hello Rose, I am a newbee, and am so sorry you are getting through this, happy that the CT was ok.  My grandma had her stroke in the bathroom too...I wonder how many survivors had their strokes in the bathroom, and whether its a coincidence.  Anyway, healthy and happy days to you.

I think the bathroom is a common place for injuries to the elderly, but My seizure happened in the kicthen and the stroke I suffered, last year, happened in my living room while I was sitting in a chair.

So sorry you had this incident, I hope it was caused by something they can fix (like ear).    I'm guessing the seizure was probably from the hits on the head, rather than stroke seizures.    Please keep us posted as to anything new.

That's what I think happened too; seizure from hitting my head.  They gave me a CT scan of my brain and it  was negative...no bleeds or anything, so that was good news.

I loved cooking too. Now I hate cooking, but I find it is not as much the stroke as the difference between WANTING to cook and HAVING to cook.

I think I feel a bit like that too but mostly I want to be able to as it was a big piece of how my husband and I spent time with our friends, sharing meals and alternating who'd do the hosting. It's still nice to get together with friends, but it's very different now. not at all like it was.

UPDATE: I bought an electric knife sharpener from LLBean and although I personally have not tried to cut with my newly sharpened knives, I witnessed them in use, cutting paper-thin slices of tomatoes. I'll be trying again soon, I think.

oh, be sure to watch the Andy one! It starts off showing how hard it is, then shows it the Andy way. It's good! But for opening things, I'd suggest things like shred cheese that come in zip lock bags, and just having someone pre-open all of them when they come into the house, so they are ready! maybe even put them in a jar that is easier to open again?

I WANT AN ANDY NOW! Can't see whereto find one though.

Thanks for the support and encouragement, Yvonne and, Debbie. I'm sure I'll keep trying but first I'll mope awhile. Maybe I'll get new knives and a promise from hubby not to use them. He can sharpen our current ones and call them his.

Strokes are not like 'injuries' where you feel bad and heal and back to normal. The brain has damage now, and the working parts are working harder to try to do more = exhaustion. Even our neighbor who had a mild stroke and can do nearly everything, still feels the exhaustion. Bob is 2 years after, and naps 2-4 hours a day, sleeping 10-12 at night.

Thanks for this post...I do the same as your Bob. I sleep a full night or longer and often take 3-4 hour naps too.

I use e-stim.. I have a subluxed left shoulder and it was very painful to have my arm lifted in any way. The e-stim has helped to strengthen the week muscles that hold my arm in the shoulder socket and has greatly relieved the pain.So glad to 'hear' that you're seeing improvement!

I just finished my tax filing too. I really hate doing taxes! It's a huge relief to be finished with that, huh?

How exciting to have a new computer;best of luck with that. Here's hoping that it's blistering fast with processing for you.

just a fyi--- there are also "elastic' shoe laces - we get our at the medical supply store - we prefer the thicker curly ones --- over the thin ones and they last a long time...

Yes, thank you, that's what I've been using but they've still been a problem for me. The velcro is proving much easier and fortunately the larger shoe is not a problem either.:-)

i have a 21-year-old son who often times behaves like a teenager especially with the not wanting to take responsibility thing. It's so nice when they surprise you in a good way. The last storm we had, hubby and I decided to stay in bed a bit late and when we got up we were pleasantly surprised to discover that our son had already gone out and started on the shoveling! We usually have to badger him to get his help. So, there is hope for our young ones. So glad your experience was positive.

I'm in NH and miserable with the cold, snow and ice (was foggy and rainy today but freezing back up tonight I'm having friends give me a ride to my 1st outpatient PT tomorrow and 1st time riding with these friends, I hope I dom't cry from being so cold. :( I haven't yet figured out a good way to keep warm on outings ... with my arm in a sling, it's difficult to wear a coat in such a way that I get good coversge from the wind.

So sorry to hear that your wife is so ill. I wish you both the best. Sadly, the flu shot is not a guarantee that you won't get the flu I understand that the flu shot is to protect against specific strains, perhaps, as Sandy mentioned, the strain attacking TX may be a different one from that which you were immunized. I always complain about the cold of winter in my area of the USA but I think the freezing cold helps to tamper the germs of flu somewhat so we don't tend to get the epidemic levels that you're now seeing in your area. Truly, Fred, my best widhes for a speedy recovery for your wife and hoping that you don't get it!

I also had to learn to walk again. Early at the rehab hospital a physical therapist asked me if I really wanted to walk again. I guess she was see how I was struggling. I was shocked by the question. It had never occurred to me that I might not walk again. Geesh. Anyway soon after being released from hospitals (4 months and 3 weeks after the stroke) my caregiver began taking me out in the wheelchair for a "walk" across the street on a university campus.. Soon I began practicing walking outside. I would get out of my wheelchair onto my walker. My caregiver followed with the wheelchair. I started with 10 steps the first day. Every day I added steps until I had so many it made sense to move to distance (laps on an oval walkway).I now (weather permitting) take hour long walks on my own. It took a lot of persistence, but it does get easier. I am really glad I kept at it. Being able to walk increases your independence and what you can do. One day on the university campus a priest came up (it is a catholic university) and told me how he had been watching from his office and had used me as an example in a homilly. Yikes. You never know.Keep up the work! It is definitely worth it.

Thank you for this very inspirational story of your walking progress! :-)

I found that there were some things I wanted to write that I didn't really want family of friends to read, as I might be venting about them! ... or perhaps too personal that I shared to help others in the same position, but too personal for friends. Sometimes it's just way too much information. They don't have the link to hear, and I do the same, just copy whatever I want them to know, after I write it.

I can understand that, although it's not 'my style' to vent about people, I will be sure to censor my posts anyway,thanks for the words of caution.