heathber

Sounds fun. Do we know where we're going?

It is very easy to fall into that trap especially when the initial break came from the other party (I'm assuming that bit, sorry If I'm wrong). Try to give yourself and him some space. You need to find a new pattern for living and to learn that you can not only live but be happy away from him. Good luck with it Love -Heather

Fred you can't just turn off your love for her even when you both know she stuffed up. I do hope for both your sakes that she manages better this time. But having been in the big house for 5 years she's got a lot of adjustment and learning to do, so reality is she's going to stuff up things like bills occasionally, she'll be completely out of practice at some of that stuff. So watch out that she doesn't pull you down, but meeting her halfway helps both of you. So go for it Love -Heather

Absolutely Jay, A stroke is a stroke and it can be tiny but in a vital spot, would that be classed as "mild" ( not to the person involved it isn't).

Those pulses must be related to the engine rattle in the car that only happens when the mechanic isn't there to hear it. I do like that Bruce decided to send his feet on vacation rather than have them be dead. If someone could work out how to give us a crash course on managing the system as soon as we got ill it would make so much difference. I've just recently discovered that there was a way to get extra therapy from my health insurance, so I'm a bit *beep* at missing 4 years of help I could have used. But I can't change the past so I'm using it now and moving forward.

Asha that sort of discharge from care is part of why i have such a team. When the system said go away i went and found a personal training gym and taught them how to help me. I also have a great private neuro physio who supervises and educates them as well as treating me. It was him who got me in touch with the new rehab once I wanted to do stuff he felt less able to deal with. While acceptance is good and necessary don't give up on the physical side too quickly either. Heather

Hi folks been slack with the Blog updates, so here's a quick update on me for the new year. I've been going to the Running program at the rehab center for 6 weeks now, and it's a seriously full on session. It must be doing something as my legs ache the next day. I'm sort of glad I can only get enough time off work to do one session a week. The people who manage 2 or 3 sessions a week have my respect. I'm finding it hard enough to do this one session and still keep up my other activities. I'm currently trying to reshuffle the times so that I'm not so tired and stiff for my usual evening training sessions, but it's a bit of a logistics nightmare, with trying to find times that work for me as well as 3 different trainers who have other commitments. The most challenging activity from running program is the coming down stairs 2 stairs to a stride. I'm still dependent on the hand rail to even attempt this and we have to always do weight on the left, so that the initial foot placement is on the good foot, where I have more control. So it's step down with the right then bring the left down to match, reset and repeat until you get to the bottom. I am also now going up and down (1 foot per stair) with just moral support( my hand touching the PTs so she can feel how much pressure I'm needing). I have been to the gait analysis clinic and had all the measurements and recordings done. What a rigmarole. It took nearly 4 hours to get all the data they wanted. And check your dignity at the door for that one, cameras from every angle, and your shirt and shorts tucked out of the way as much as possible, That's a test set that really needs to be done in your bikini. It'll be another 6 weeks ( or so) before I get the report of findings and recommendations. I also had an assessment and botox injections yesterday at the Spacticity clinic. Interestingly they could find nothing other than tonal patterns in the lower leg and ankle so they don't want to do anything with the calf or tibpost which I was expecting them to treat. Their opinion is that the issue causing my lack of heel strike is more about the shortening of my tendon than anything else, so they are talking about possible tendon lengthening surgery, but they won't do anything about that until the gait analysis results come through and are checked by the surgeon. The idea of being in a cast for a couple of months is really not appealing at this stage, but the benefits will probably be worth the pain and inconvenience. What they did identify was spacticity and overuse in the rectus muscle in my quad which they injected. So I'm now doing the stretch daily and watch the walking pattern routine (make sure you are lifting your knee, to walk). It'll take a few days for the toxin to spread out and do it's job but it feels like it's starting to work already, I'm just hoping that doesn't mean it will wear off quickly too. By weakening the overactive quad I should get better knee control and hamstring activation, which will help to limit the hip swing that currently limits my walking speed and efficiency. Here's hoping anyway. It feels so odd to have active therapy again after having nothing official for the last 4 years.

Oh so easy to do. I now have a habit of checking my calendar each morning for what's on today, But I still occasionally stuff up. I try to spend a few minutes each morning before I get out of bed recalling what the calendar says for the day and then I double check my memory once I get up.

Hi Pam, it's good news even if it left you feeling sad. I hope once the reality of it sinks in you feel a bit better, and that hopefully now that fight is over you can get on with living the new life you have earned -Heather

Fingers and toes crossed whenever I can spare them Pam. It sounds like that move would be great for everyone, but bureaucrats will do their best to make it hard. -Heather

Often how it works after a little rant. Get it out of our system and move on with the day. Hoping you had a good day with your son and ex. virtual hugs from the other side of the globe.

That one was worth fighting about, Cellulitis is no joke and needs immediate treatment. If the nurses where you are didn't even recognise it, then no wonder you didn't let them treat it. Sounds like they need to be reminded that they are human and don't know everything. So keep on being the squeaky wheel in their day hope it feels better soon -Heather

Thanks Elizabeth and Debbie, I just have to work out how to fit it in without exhausting myself

ahh yes very true. Thanks for the reminder Jay And thanks too for your daily blogs of positivity. -Heather

Hi Fred, Hang in there and remember use it or lose it. While rest and pacing yourself is vital, you also need to keep using what you have, try not to depend too much on the assists. Try to do a little bit each day and ask for a new PT assessment and exercise program. It sounds like the steps at church would make a really good goal to keep you motivated. I'm sure there are people at the church who could park your car for you and who would help you up those steps. Take it slowly for a while, but don't stop completely please. Hugs ((())) Happy Christmas Bless you -Heather

Well, I have a new Rehab Specialist. I told my physio I want to learn to run and he said the expert for that is Gavin who was one of his colleagues a while back. Gavin did his Phd on returning Stroke survivors to running. And he's got a program based at a local hospital. So I contacted Gavin and explained my situation. It turns out my private Health insurance, which has been pretty useless so far in my stroke recovery will cover his program and the linked rehab specialist. So I got the referral from the GP and met the new rehab specialist yesterday. She did all the usual poking and made me walk around her room without my shoes. She also called Gavin in and they did some more poking with the end result that I'm joining the running program and her spacticity clinic. I'm booked in for lower limb botox and formal assessment/measurements in mid January and they want to get me into a gait analysis program that's just starting up, where they'll use sensors to measure my walking muscle patterns and work out what is cause and what is symptom and therefore where they need to concentrate strengthening exercises. She also talked about possible tendon lengthening surgery to correct the shortening of my calf, although she wants to try all the other methods first. This is the first specialisat who's seemed interested in doing something about the calf which has been my main concern since the clonis started(in the first few days after the stroke) and I was able to understand what it meant and what the result would be. It's funny but the calf and twisted foot have always been higher in my priority list than the dead arm, even though the arm would probably be more useful in day to day living.

Yes Jay these little things make all the difference to your day. I just wish our supermarket would get more of the smaller size trolleys. I had a trip very like your last year one to do my weekly shop yesterday (no thanksgiving here, but they have put out all the extra Christmas stuff in the aisles which makes the navigation harder.) The small trolleys were all MIA so I had to use one of the big family trolleys and it had a mind of it's own. As I only use one hand to push with a wonky trolley is a nightmare. -Heather

It's such a great feeling when you can do fun things as part of your therapy. Pushing your limits will hurt a bit sometimes, but you have to push to improve. It's about doing the risk benefit analysis, and so long as the pain and dizzy's pass within a reasonable time frame it was worth it. Especially if you had fun playing ball/baloon games. My trainers do that with me too, we'll have a session that on the surface looks simple, but I come out of it exhausted.

Oh Mitch, I know that stiff arm walk syndrome so well. When the arm and shoulder aren't behaving all the torso muscles tighten up too with trying to stabilize it so your whole walking and balance get stuffed too, as the stiff torso restricts the hip movement. I find a heat pack on my side,under the arm is a great help, along with regular torso massage and stretching( yoga). The best answer for me is to botox the arm, but it wears off so fast. Good luck with it One thing that stroke makes so obvious "Everything's connected"

Sometimes we don't want help but we do want our frustrations acknowledged. I had to learn to say that out loud as appropriate. or people go into problem solving mode when that isn't really the issue. So now I tend to say" I'm just venting, I don't expect anyone to fix it, but I do need someone to hear me." Maybe you could try prompting that way when something is "wrong" for her. Hugs -Heather

People will insist on blaming the messenger. Try to stay above it. I'm so glad to hear you got the window fixed though. If work needs doing they should be able to get it done without you having to call the higher ups. Keep on being the squeaky wheel and you never know things might actually change. Hugs -Heather

I must remember that the "blog this" button exists. Congratulations again Pam

But that sounds like the perfect holiday unlike my recent trip which was far too hectic most of the time (entirely my own fault that).

Don't we all, I turn it off wherever possible.

Hi Pam, Hang in there. Forgiving is hard. But you are correct you need to learn to let it go or at least pick your battles. Some things are worth fighting for, like the feeding of the lady who can't/won't eat, but some things will take more energy than you can spare from your limited store. So follow up on the fights you have a chance of winning or that involve higher principles and learn to let the others go through to the keeper. The phrase that got me through the rehab hospital was "don't sweat the small stuff", and that was hard enough when I knew I was going home in a few months. It must be so much harder for you. Love and Hugs -Heather