heathber

That sounds like a very sucessful birthing and mothering. Enjoy them. They'll be a handful once the eyes open and they start getting bolder.

So it was one of those weeks, I'm a bit tired but feeling very satisfied. It was a big walking week. I'm getting in practice/training for a mediterainian cruise holiday. I want to be able to make the most of the shore trips, so I've been doing progression walking training for the last 3 months. I pushed too hard early on but we are now getting to the pointy end and I did pretty well with the load this week. And as well as meeting 95% of my walking goals over the week, I did the barbell deadlift with 20kg on the bar, not quite a post stroke PB but getting close. Using the wrist wrap on the left (bad) hand makes it possible to lift over 15kg safely. I use the spacticity in the finger flexors to hold the bar and keep the wrap tight. Without the wrap the fingers fatigue and by the 8th rep the left hand is not gripping any more so my trainer has to be ready to catch, but with the wraps on that doesn't happen as the shoulder and legs are taking the weight and the hand just has to keep hold of the wrap so it can't slip. I've been working on hopping and jumping this year and Monday night we progressed to jumping up/onto and down/off the lifting platform. Which is about 2inches (5-6cm) high. It's a large enough area, that I don't have to worry about positioning the landing, just making sure I clear the toes on the edge, and land the weight evenly. When jumping down, we measured distance moved forward and I got just over a foot (30 cms), which is enough that if I'm feeling silly this summer I might even try jumping into the swimming pool from the edge. Then on Wednesday night we upped my obstacle course to 2 lots of 16 minutes. The obstacle course has been part of my walking progression and trip preperation. The trainers put together a range of things on the floor of the gym studio and then get me to move over around and through them. Testing both my physical and my mental stamina. They use aerobic steps, ropes, squishy mats, boxes, weight plates, tyres, etc. Whatever is around, and sometimes I have to dribble the soccer ball around things and sometimes I have to step over or onto things in patterns. When we started it 5 minutes was my limit. and I got a ful minute real rest between sets. This week it was a 2 minute "rest", but during that rest I was doing hamstring curls lying on the floor. The step backwards from high to low leading on the left foot is by far the hardest, but I can now usually do it. The other one that felt really good this week was spending a morning with the third year OT students at ACU (Australian Catholic University). Being a practical example for their community neurological assesment tasks. This is part of their practical examinations. They have to do an assesment and prepare a management plan for a neuroligical patient. For some of them it's the first time they meet a person with a neurological deficit. It depends on where they ended up for thier clinical placements. So it's a chance to explain how stroke affects you and to ask for help with particular tasks if you need it. I had to rack my brain to find things for them to work on. But it was good for them to see and feel the reality of a spastic arm/hand. and to show them what can be done on a practical level for living with the dud hand. I think it's important to put real examples in front of them rather than just relying on what the text books say. AS we know the reality of this thing is in many ways not in the books. So that was this week. -Heather

Contacting the architcect sounds like a plan, notthing ventured nothing gained. If he says no it only cost you sone time and a stamp. Do keep your heart. I'd miss you if you gave it up. The sleep sounds brilliant. Is it giving you more energy? -Heather

Yep asking for help can be hard to do but as Ethyl said many people are happy to help if something is important to you. Don't be shy about asking, or about using bribes on occassion (especially with family) When I need help from my nephews I often give them fuel money which I know will be enough to cover them for the trip to come help me and some left over to go out with their mates later. they are studying so have time but no spare funds. And if your daughters aren't too far away, use the guilt trip now and again (as in remind them that you did it for them when they couldn't drive themselves, and now the boot is on the other foot.)

Absolutely!! I'm feeling pretty positive at the moment. But there are always days when nothing goes right and I drop or break things where I would love a do over, not that I'd know what to change to stop my stroke as we never did work out why.

Oh yes hate that feeling and the usual end result. So embarrassing. When you can't move fast anymore it's always 3 steps more than you can wait for. And the control is not what it once was and your muscles/brain can only do one thing at a time. You can hold on or you can move, but doing both is not possible.

So she thinks it a waste of time. Everyone has different needs and enjoyments. If it's important to you don't let her opinion change your mind. Keep on enjoying your life.

the Url was https://strokefoundation.com.au/strokeconnect but it's no longer working. I'll need to let Diane know, they said they'd leave it up as reference, but I'm not surprised that it's gone.

Hi Scottm, better to let the mask slip sometimes, than to let the pressure of wearing it push you over the edge. If you're hiding things, they'll eventually get away from you and then it'll hurt people more than you being honest up front. You don't need the emotional pressure of keeping things to yourself. Find someone you can share this with before you explode or collapse from trying too hard. Many people do not expect you to be perfect, and you should not expect that of yourself either. Sure do what you can do and don't let this thing stop you enjoying what you can enjoy. cake all over your chin could be a good ice breaker for explaining to someone about "invisible" injuries, and how hard some of the "simple" things are now. Not everyone gets it but don't try living up to unrealistic standards, especially ones you are putting on yourself. You don't need sympathy, or fussing over but you do need people to acknowledge that sometimes this thing sucks. -Heather

Hi Sue there's no plan to shut down the Stroke Connect website (so far anyway) it's all still there just locked to updates.

Nancy, We all are who we are. And beating yourself up over what you had to do is not going to make it easier or better for either of you. You did not fail, you did what you could do. And no one can ask for more. You've taken the big step and made the hard decision. Now you have to accept that life is what happens while you're making other plans. The guilt will cripple you if you let it, and I doubt that Dan would want that if he could fully understand what's happening. Take a deep breath and keep on trucking. Hugs -Heather

Hi Mitch I know it's possible and I've met some people who've had it happen. The brain mis-connects some of the nerve impulses it's now receiving, because it no longer has the proper connections it wants to assign these no longer recognised input to something and it seems to connect them at random, so e.g. basic touch signals get interpreted as pain, or sensations from your little finger get connected to the finger next to it, etc. So correction is about retraining and using your neuro-plasticity to your advantage. You've got the NOI explain pain book, it should have some strategies and suggestions. Make sure you discuss it with your new rehab team. Good luck -Heather

My neuro Physio Brendon in Clifton Hil, is one of the NOI founders. I wish you lived closer to town so you could go see him.

Hi Mitch, I was concerned when I read the plan they'd put you on. I wrote a comment but it seems to have not posted. A good trainer or physio will do what they call a progression plan that works on the 2 steps forward one step back regime. So you build steadily for a while and then you back off a level for a few days, and then you go back to what you did before the break and start increasing again. The plan they gave did not appear to have enough back off for a fit person and certainly didn't make any allowance for or recognistion of stroke fatigue accumulation. And that's the key you can't build as fast or for as long as a non stroke person, and then your back off time needs to be longer. One thing to do in addition to your training is to keep a fatigue diary, rate your energy level at the start and end of each day (give yourself a score out of 10.) You should be able to see the pattern develop and how it links to your workload. If you get a morning score of less than 4 for 2 days in a row back off until the score is back up to at least 7, during back off stick to your old 30 minutes a day stroll which should keep the muscles and joints moving. After my last "bust" it took two weeks of gentle exercise (don't be tempted to stop completely) to get back to where I had been energy wise. But that one took me about 5 weeks to build to before it hit. I've been back on track although pushing/increasing more slowly for 2 weeks now. I've also been working with a nutritionist on increasing energy through diet, and he's got me on pepitas,walnuts and flax seed oil, among other things. You need a diet with increased omega 3s, magnesium, and calcium for muscle energy, blood flow and reduced inflamatory response. I've found it works really well, my body composition numbers had been going up each month and then I overdid it and the inflamatory markers went sky high.

Hi Mitch I've recently started cooking regularly again. For a long while I did the make do with pre prepared stuff routine. But about 4 months ago I started seeing the nutritionist based at my gym so as a result I've been slowly cleaning up the diet. Which means I have to cook for myself, so I can control what goes in and portion size etc. The diet is all about getting me more energy, by improving blood flow and mascle quality. It was working really well until I went and pushed too far on the exercise ramp up. So at my last check up my numbers were down, where they'd been on a nice steady improve. I'm doing the cook once a week thing, about 8 portions that I then divide and freeze as single serves. I'm mostly using the slow cooker so I don't have to chop finley for most things, and I only peel things that have particularly tough skins. I've bought a mini food processer for when I need to do something like fine chop onions. One handed cooking is slow work, but worth the effort. I'm loving the slow cooker as I can pretty much ignore it once it starts. And it doubles as a pressure cooker I made a really good no stiring required risotto the other night. -Heather

yep that's a really good book, My Physio Brendon is one of the NOI members and teaches at their seminars.

Be a bit careful Mitch. That's a pretty tough program with minimal recovery time. I hope you are keeping a fatigue diary as well to discuss with your physio. It sounds like they don't yet get the inpact stroke can have on your physical stamina, and ability to increase muscle use, where's your plateau/consolidation periods in this training plan? I've just been through this the hard way, so if you can do it great and I'll see you at Hanging rock on the 20th. That's my current training goal. -Heather

Hey Mitch, none so blind as them that will not see. You're not alone in not being able to see the obvious until someone outside tells you. I'm sure Jules is enjoying her giggle at your expense. Can't wait to hear what your phsio has planned for you. Just don't try to make haste too quickly. I'm currently saying very rude words to myself because I stuffed it up. I was doing heaps more and getting away with it so I kept on adding, I forgot (again) that I can't do what I used to. So the exercise ramp up was the same as what i'd have done pre stroke, as was the recovery plateau timing and length. So I triggered cumulative fatigue that has set me backwards, 2 weeks extra recovery level training. I saw the nutritionist again last night and he was able to give me the numbers that prove I pushed too far, my muscle quality measure had dropped off, even though my fat% is still going down. I'd been gaining muscle quality in the 3 months prior, and feeling really good about what I could do. But this month I got the reality check, and it's hard. -Heather