heathber

Assisted living sounds like a great move. Fingers crossed you find somewhere soon.

Hi Sue, It does sound like you need a pet of some sort. I do find having the cat very beneficial to my mental health. I got her when I first came home from hospital and having to look after her gave me extra motivation for looking after myself, and she was a great physical therapy tool, providing a moving obstacle when I was still getting this walking thing automatic again. I had not had a pet for many years because of my lifestyle, but I knew that was changing after the stroke anyway and she doesn't tie me down that much. I use an in home cat sitting service when I'm away for more than one night, but it is an extra cost so you don't go into it lightly. So maybe I'm now a traditional crazy cat lady who talks to the cat as she comes and goes but I can live with that stereotype. Like your friends I'm happy in my own company although I miss having someone to go out to dinner or a gallery with. Hugs -Heather p.s. I'm not a Widow but I do live alone with no partner in the picture -H

Oh yes to this one! Have a list of things that have to get done to reach the end goal and then just work your way through the list one step at a time. It also means you can see the jobs you can give to someone else if you need to. And that feeling of accomplishment when you cross something off the list

That's a fascinating question Fred, I'll do some research and see what I find. -Heather

I'm in the process of setting up some surgery for myself and the surgeon is setting it up so I can go to the hospital rehab ward for a few days after the surgery and standard recovery stay. So that once they are sure that the pain etc.is under control, when I would normally be sent home I'll move down the corridor in the hospital where they'll help me with ADL training(dressing, shower etc.) walking and balance to prepare me for going home alone in a cast. Does such a system exist where you are?

Pam, your blog title gave me such hope for you, but even if it's not all the way better it has improved some so that is good news. Having a real blanket does make a difference to how well you sleep and hopefuilly better sleep will give you more energy to deal with the pain. So long as you are doing what you can you are progressing. Hang in there -Heather

Thanks everyone, I'm alternating between fear and anticipation. There's just so much to be organised and now I can't do anything until after Easter. Fingers crossed I can get the neurological stuff sorted out in the next 4 weeks so we don't have to postpone. I've got a months holiday booked for the end of August. And if the Surgery doesn't happen in May there won't be enough time to do the rehab I'll need after the cast comes off.

Saw the orthopedic surgeon this morning. He's a very nice man who took over an hour to explain all the things he wants to do and to answer all my "silly" questions. The result is I am going to go ahead with it and I'm feeling pretty confident that I can manage this, although it's not going to be easy. He want's to do quite a few things 1. Detach the rectus muscle at the pelvis, it will then pull back into the leg by about 4cms and will grow back and reattach at the normal point, but as we'll be stretching it as it heals it will be longer and that will mean my pelvis should sit back where it should be and my hamstrings will not be under constant load which is limiting their function 2. Inject botox into the hamstrings to make sure they relax during the healing 3. Release the fascia on the calf muscle so that it's longer and I get more range in dorsiflexion, he can't give me full range as that will weaken the calf too much. 4. sightly lengthen the tendon in the tibpost muscle 5. Split the tendon that attaches on the right side of my left foot and reattach half of it on the left side of the foot. this will rebalance the foot and let me lift it flat. The end result of all this is supposed to be better knee flexion and pelvis location plus normal foot positioning without the current eversion under flexion. Which with retraining should allow an almost normal gait. I may have to go back into an AFO if the foot drop still happens(likely as the brain hasn't been able to do this fr the last 5 years), but as the muscles will no longer be fighting with the AFO that should be easy and pain free. It's all keyhole stuff but because he's moving the tendon I will be in a half leg cast for 7 - 8 weeks however I can be weight bearing on it as soon as I want to be. I may need to use a crutch for the first couple of weeks, but he's organising for in patient rehab placement after the initial hospital stay to make sure I have the balance etc. working before I go home. The hardest part will be that the cast is not allowed to get wet so setting up for showering with only one useful hand is going to be a bit of a challenge. As I no longer have a neurologist, I am going to need to find one and get a risk assessment done prior to the surgery so they can adjust and plan for any issues. I assume this will mean doing another MRI. The main risk is DVT which should be minimal as he wants me back up and about within 24 hours anyway. So now I need to plan for being out of the office for a couple of weeks.

Sounds like its time to take a scalpel and check for green wood under the bark. If you've still got live wood prune hard, water and hope. Otherwise time for a new tree.

Perfectly put Sandy. Your normal mat not be the same as other peoples or the same as your normal before stroke but you've got to the comfortable place so enjoy it. People also talk about acceptance as if it's a nasty word and means giving up. Acceptance is like your normal. It's not that I don't want more and or that I'm not working for more but my normal is what it is now and I can live with that so in that sense I've accepted my stroke and what it did to my life. -Heather

Good job well done, enjoy your victory!!

Fingers crossed you find a better match of doctor. Although it would be hard being a doctor unable to help someone. Who teaches them that being like that is better than saying "I don't know" It sounds like your issue was too hard for her but she didn't want to admit that.

So good to hear. I hope it works for a long time.

Sounds great Pam all the best for the new pain relief.

Another Online resource from here in Australia.https://enableme.org.au/resources Our National Stroke Foundation have a Carers and survivors guide that they hand out in hospitals. The PDF version can be downloaded from here. https://strokefoundation.com.au/what-we-do/support-programs/my-stroke-journey

Oh Pam Hugs, I hope it gets sorted out for you soon. Pain is the worst and people don't seem to get how much it can affect you both emotionally and physically.

Early on after my stroke I had lots of problems with scanning and going to the correct place on the page when getting to the edge of the text at the margin was really bad for me. I'd skip down 2 or more lines so large chunks of text would be "missing" and the sentences didn't make sense. It was very discouraging. The OT got me to use a piece of paper over the book so that the line I was reading was just above the paper and the text I hadn't read yet was covered. Then when I got to the end of the line I'd move the paper down 1 line and that gave my eyes an easy way to scan to the right place. It was a bit slow for he first week. But after that I found I didn't need to do it anymore. Like all things post stroke it can be relearned or overcome. I'd be lost without books. -Heather

Good find on the shoes it does seem to work that way when it comes to finding out what you can get. I hope the pain meds get sorted out soon. Sounds like overall things are going really well at the moment.

yes under the circumstances a glass of red was compulsory, but you knew what the result would be, so don't kick yourself. At least my family doesn't quibble now when I insist that live shows and concerts have to be in the afternoon not evening. As if I go in the evening they tend to be a very expensive nap.

Life goes on and you have to keep moving forward so if you can laugh at it do so. It makes it just that bit easier. Hope your birthday was fun.

Change is not the end. Yes it's now different, but take the time to learn about the person you now are, and you'll find you can be at peace with this. You'll find a lot of the person you were before your stroke is still there. Grieve for what's gone in the short term but also remember it's not "you can''t" it's "you can't yet" What's ahead of you is much hard work but it will also have its rewards. Even if what you get is not exactly what you asked for. There will be highs and lows but that's what life is. Learn to be now not then and life will feel better. You can do this -Heather

Nicely put Jay :hug: thanks for being here

Maybe I'm crazy but I can't really see the bad news in this. You now know where you stand and so long as you expect it to be slow and hard work anything more you get from this point is a bonus. If this is the first time the Drs have had to guts to tell you this then I'm sorry to hear that. I don't get why they hate telling us this truth. just remember though that improvement stops when you stop working for it. It was once I reached that conclusion that I have been able to get back to living as the person I am now, which includes lots of hard work on the stuff I'm not giving up on yet as well as lots of fun stuff. Take it and run with it. Life is for living -Heather