heathber

Stroke Survivor - female
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Blog Entries posted by heathber

  1. heathber
    Hi All I haven't blogged for ages, thought it was time for a quick update.
     
    I've been self funded for all my care and therapy since my stroke but with the shutdowns here in early 2020 I was forced into the realisation that I am not as independent as I thought I was.  So I finally applied for government assistance with health, self care and therapy costs through our NDIS (National Disability Insurance Scheme). It's been a roller coaster over the last 14 months getting all the information together and the medical assessments done and then fighting with the bureaucrats who control the system about what supports I need and  what they will fund (or more accurately what they won't fund.) and then trying to organise new care workers during a pandemic (which thankfully here is largely not an issue).
     
    Anyway yesterday I had my first Saturday cooking and market assistance day. We had fun, cooked zucchini slice, went to the fresh food market, planted a new cactus into a little pot (my office plants did not survive the over 12 months with no one in the office) I was back in the office for the first time since Feb 2020 last Thursday, but that's another story.
     
    Skye my new home help, comes twice a week, Tuesdays she comes and cleans the apartment and helps me with the tidying up chores that the "normal" cleaners just don't do, then on the weekend we do the "fun" stuff and get me setup with food for the rest of the week (I'll cook the curry myself this afternoon, we bought the bits for it but Skye had to leave for her other job and I was running out of steam.)
     
    I also now have hydrotherapy in my apartment complex pool every 2 weeks through the scheme, and they give me a rebate for some of the costs of my personal trainers, and specialist physiotherapy treatments.
     
    My Support coordinator is also looking into getting me to some disability snorkelling sessions if we can organise it before the water gets too cold.
     
    So I'm in a pretty good place (mentally and physically) at the moment although the ongoing fatigue sucks pretty bad some days.
    -Heather
  2. heathber
    I've just got back from today's Running Program Session.  This is the second one I've been to since the toe surgery. Last week I had pain after 3 sets of stairs so we had to stick to low impact, low stretch activities.  Today I started with 6 minutes on the cross trainer. followed by 10 sets of stairs with no discomfort at all. Did my total gym left leg squats and some "calf raises" also all fine so then we moved across to the mini tramp.  Once on the tramp Hannah got serious about getting me up on my toes. which I haven't been able to do for probably years. between the curly toes, spastic calf and calf surgery.  I felt like a real cltuz as I just couldn't do what she asked.  It turns out I've been compensating really well by using my knee rather than my ankle, but now she wants me to do it the right way (as physically it should be possible now). We eventually got me doing it by taking my shoes off and using the total gym at almost flat, with Hannah providing tactile feedback. It was so hard to do I was dripping with sweat and exhausted after just a few.  But I did it, now to make this the move the body wants to do rather than the other way.  Then I'll need to build strength again so I can do it with weight and gravity. I feel a bit like I'm back at square one, although I also know this is how it has to be done. and I'll get more from unlearning the bad habit. It's just always so hard to take a step back so you can move forward.
  3. heathber
    Hi All I've been so slack with the blog. I meant to update you all on my holiday over a month ago  But life got crazy busy. So here's a general catch up.
     
    I had a 3 week holiday in July that was more like 4 weeks by the time you add in travel time etc.  ( it's a 22 hour flight with a stop in LA to change plane and you cross the date line so you lose a day coming back, although you gain a day on the way over so I left on 4th July and arrived on 4th July.) On arrival in NY NY we had 10 days "touring" staying in a boutique hotel in Brooklyn and exploring the city. We did a huge range of activities as well as ordinary sight seeing.  The tour organiser is a start up company run in partnership by one of my gym trainers. it's called "Urban Heartbeat". They offer active travel experiences.  So we walked all over NYC as well as going to gyms and dance classes etc.  It was stunning.  At the end of the 10 days I had another 2 days of personal sight seeing which I used up in the museums and galleries we hadn't already been to.  I then got on a cruise ship "Norwegian Breakaway" for a 7 day trip out to Bermuda and back to NY. I love cruise ships and I spent most of the cruise time in the Hot Spa area where you pay extra to get access to spa pools, sauna, steam room etc. I also treated myself to a seaweed wrap and some massage. The ship docked 3 nights in Kings Landing and I went out snorkeling and took a Segway tour around the settlement.
    On return to NY I had 2 more days exploring before getting back on the plane. I took myself to see Phantom of the Opera at the Majestic Theatre, which was incredible I hadn't seen it live before even though I'm familiar with the music and the story.  I also did a back stage tour of Radio City Music Hall, again it's worth the walking involved.
     
    Once I ran the numbers from my activity monitor for July I had averaged 9 kms walking each day.  So I was very proud of myself as I'd only had 2 days of rest time other than the cruising days.
     
    I had a nasty fall in the aeroplane on the way home so I had some truly spectacular bruises for 2 weeks after I got home.
     
    On getting home I went to see my surgeon as we'd done a gait analysis test in early May and the results had come through just before I left for NY. Overall he is very happy with the outcome of last years surgery, as am I. However I've been having a lot of problems with curly/cramping toes and botox treatment has only been partially successful so he offered to try some surgery on the long toe flexors and we scheduled that for 2 weeks later.  It's just a day procedure although it does involve a general anesthetic.
     
    Then the week the surgery was scheduled I had a really bad case of gastroenteritis so the surgery was postponed until last Tuesday.  I see him again tomorrow for review and hopefully removal of the stitches. He told me I'd be walking on it immediately but I only half believed him, turns out he was right. I haven't needed any of the strong pain relief drugs I was sent home with and there's only slight discomfort now when I walk down stairs as it stretches the affected muscles.  I'm expecting to be back to full training next week.
     
    Along with the surgery I've had upper limb botox again and I'm doing an 8 week OT program with it to try and get more useful shoulder/arm movement. I had my first session for that today. was supposed to be 1 hour but I was with her for at least 90 minutes, this is going to be interesting I haven't done specific upper limb therapy for over 5 years now.
     
    The other news in my life is that one of my nieces got married the first weekend of September and her new father in law is making "friendship" overtures. It's a funny feeling to be courted I've been single for so long that I'm not sure what I think about it.  He seems a nice man and has been separated from Jame's mother for many years, the wedding and after party was the first time I'd met Jame's parents. I'm still deciding what I think so for the moment I'm just keeping the conversation open.
     
     
     
     
     
  4. heathber
    This is tiny update to boast.
     
    I finally did my first "run throughs" at Running Group on Monday.  I've been going to Running group since Dec 2015 so it's taken 18 months to meet this first part of the goal. It's now just over 12 months since the cast came off after my leg surgery. I still can't really get up on my toes, so this was probably not really running which actually needs "flight phase" but it's a good approximation and starting point for improvement. So I'll call it "running"
     
    "Run throughs" means  that they put a gait belt on you and then you "run" with little steps, as much on your toes as you can down the hallway (about 10 metres) with a therapist holding the gait belt just in case and helping you with rhythm. The aim being to eliminate the "gallop" rhythm that most stroke survivors have where the bad leg hesitates between pairs of steps. this is all about consistent fast twitch muscle response. I did 4 runs and each was a bit better than the last one.
     
     
    So there's still a very long way to go but ...
  5. heathber
    So today was a surfing day. The one last month got called off because a whale carcass had washed up on a beach a bit close to where the event was scheduled, and the authoraties were being nutty about possible sharks. OK so the risk of a larger shark being in the area was increased but REALLY it had gone from minimal to minimal + a tiny bit. However the local papers were being stupid about it so they cancelled our day. Not because the risk was significant but because the publicity if something went wrong would have stopped it forever. When will people accept that sharks are a part of being in the sea and mostly they prefer to leave people alone?
     
    Today we were at a beach further down the coast. So I had a 2.5 hour drive there and back. And right now I'm stuffed! It was a magic day though. I had 2 times on the board, with 4 rides in each set. We had perfect weather for it. air temp about 28, with a light breeze, sunny but not too bright sand comfortably warm. water temp about 15.
     
    So 8 "surfs" a little walk on a beach and 5 hours in the car has exhausted me but I'm happy exhausted and I don't really care.
     
    For 5 of my 8 rides I was on my knees, for the others I was lying on my stomach. For someone like me I get on the board facing shore in knee deep water and then the crew carry/push me out to the break, then a pilot gets on the back and does the kicking/steering and the support crew form a funnel back to the beach and stand by in case they are needed. I got a serious amount of water up my nose on a few ocassions as we were backing out. And I fell off in the shallows twice at the end of a run, and had to be hauled back to my feet, but there's nothing like the joy of being in the sea, especially when I know that there are plenty of people about to not let me drown. The volunteers are amazing.
     
    The surf day is organised by the Disabled Surfers Association and anyone with any sort of disability is encouraged to come along and get wet. They have volunteers to help you with changing in and out of wetsuits and they have mermaid tail suits for people who can't walk or easily get in or out of a normal wetsuit. They have beach wheelchairs and portable hoists etc. For those of us who are more mobile the volunteers help you across the sand and even though I go without a carer it doesn't matter.
     
    The surf boards they use are ultra big soft learner boards about 3 meters long and not quite a meter wide.For people who need it they use water beanbags to prop them up. The surfers are all ages and so are the volunteers. They must have put at least 150 disabled people onto the water over the 5 hours that the session runs. and there would have to be about 20 volunteers for each surfer. So it's a huge exercise to run it. They do it 3-4 times each summer so hopefully I can do it again next month.
    I was supposed to be going out to a film with Mum and Dad tonight but once I got home I rang them and cancelled. Maybe I'm finally learning to pace myself a little. Don't count on it though
  6. heathber
    After being reminded that I meant to try to get some more social contacts after a thread from Marcia (Newlease) reminded me. I got onto "meetup" last week and today I went to a creative craft afternoon. "Christmas card collage" It was held at an inner suburban cafe, 8 people I'd never met before sitting at a big table cutting and pasting and chatting just because. Some of the women were incredibly creative and I was much less impressed with my own efforts but I'll certainly do it again. The subject of stroke/disability never came up. I wonder if they'll be more curious next time, but right now I'm not even sure that anyone noticed that I only work one handed. I didn't say much, but they seem to be nice people, 3 others were also first timers to the group, but it didn't feel at all cliquey (is that a word?)
     
    I very nearly chickened out on going, I'm very tired today. Last night was the gym Christmas dinner, and it was a great night, at least 50% of the attendees took on the costume challenge "pop and rock stars" ( I went for easy and comfortable as Elton John). We had 2 tina turners, 2 lady Gagas, 2 Madonnas, Freddy Mercury, Pink, Elvis, Slash, "Jake" Blues, Seal, Rihanna and a few I couldn't place, we had the place to ourselves with a karaoke machine and open bar. I actually drank some beer (just one large glass, but I've generally avoided alcahol since my stroke) and didn't get home until 1am. Certainly way past my usual bedtime.
  7. heathber
    Hi all, just a quick status update before I go off on a months holiday. I'm not expecting to have internet for most of it, and where I do it'll be on the smart phone, so not easy to do, I don't expect to be checking in here.
     
    I'm heading off on a 3 week cruise from Sydney to Perth - over the top. Then a week in Perth before I fly home. Jade will be staying at home on her own, with the cat sitter coming in every day. She'll be so cross with me but she'd hate being in the boarding cattery even more.
     
    I'm progressing well with the exercise routine on the affected leg post surgery. I still can't hop on that leg or do single leg calf raises on that side, but I'm back to double leg jumps, and stepping up and down from steps and taking stairs properly, even if slowly. I can go up without a rail now but not yet game to come down no hands. I still glare at the people who run up and down the stairs in the office :crying: Mostly because I'm jealous.
     
    I'm hoping that once I get back from the holiday and have my next rehab specialist review I'll get the approval to go back to the running program. They wanted to get basic function and strength back before attempting to restart it.
     
    The leg surgery has made a huge difference to my gait already even without having full function back yet. I no longer hitch my hip to get the foot through, my knee bends normally again,. and the flexor muscles in my calf and foot are starting to wake up (before surgery the assessment was that they were never going to be functional) but since the surgery they are trying to fire, they are not yet fully coordinated and tire very quickly, but it's now clear that I'll probably not have to have an AFO again. yippee :yay: The only down side has been that the toe curl is back with a vengeance, but I conquered that once I can do it again.
     
    The hardest part has been unlearning the movement patterns that got me through the last 5 years, I only slip back now when I'm tired. And with the more normal walking pattern a lot of the lower back muscle pain has gone.
  8. heathber
    Hi folks,
    Surgery was done on May 5th, and they took the lower leg cast off this morning, How I'll get through this again but longer if they do the tendon transfer I don't know. 4 weeks nearly sent me demented.
     
    The surgery was planned to be calf lengethen, rec-fem lengthen and tib ant split tendon transfer. But once they started they found that the calf was too tight and while they lengthened as much as they could in the calf, if they do the tendon tranafer on a too tight calf it either won't heal (would tear off under pressure) or it will stretch and be useless in 6 months time. So they did the rec-fem (quad) and the calf and I lived in the lower leg cast for 4 weeks so that the calf had to heal in the extended position.
     
    So the rec fem healed very quickly and nicely, and I once again have full range knee flexion. Still have to keep at my stretches to make sure it stays at this length as the tendon regrows. The really nice thing about this bit is that its taken the pressure off my hamstring and pelvis, so I can use my hamstrings much more easily as they've been fighting the too short fec rem so have always been partially on, and as my pelvis now sits were it should be and my hamstring isn't fighting my knee seems to have stopped hyper extending as well ( I hope I'm not imagining that we'll see for sure as I start to use the lower leg again.
     
    Now with the cast off I'm back on the crutch as the calf is very weak. we have got at least 5 degrees dorsi flexion now too, needed pressure to get to 0 before surgery. But at the moment when I put any load on it at more than 0 it really hurts, that calf muscle has a lot more healing to do before I can start to load it up properly. I can now lift my toes easily when seated, although I'm now going to have to work on controlling direction of foot placement.
     
    The surgeon is still talking about an AFO as when I was first started to move around his office I was walking very flat footed although not quite at foot drop level. Since then I'm being very careful when walking with the crutch to make sure I lift the toes and get the heel strike to happen. It tires very quickly though so I'm only get about 10 steps with heel strike before the toes don't want to lift, and I have to stop and reset. But I am getting heel strike so hopefully It's just a matter of training and I'll be able to stay without an AFO.
     
    I see him again in 3 weeks for next assesment, and it'll be a 6 month wait with lots of training to see if I can loosen the calf enough for him to try the split tendon transfer, although right now the thought of 7-8 weeks in a cast is much harder now I know what this has been like.
     
    So all up I think it was worth it, although now thw hard work starts again to get the most from it.
  9. heathber
    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.
  10. heathber
    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.
  11. heathber
    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.
  12. heathber
    I did my big test walk yesterday. I promised myself that I would get to the top of Hanging Rock before I left for my holiday. It's a good test of my capabilities and a way to asses the impact of this sort of activity. This is where we went https://en.wikipedia.org/wiki/Hanging_Rock,_Victoria
     
    I had 4 support crew in the end, several other friends had to cancel at the last minute.
     
    We got to the Summit in just under 1.5 hours via the "stairs" route. We came back down via the "ramp" path, which is very steep in some sections, I doubt I could have done the ascent via that path. To get to the top you have to go over some pretty rough rock "stairs" including a few tall ones, thank goodness I took my pole with me. Coming down only took about 45 minutes.
     
    At one point on the decent down the big steps I misjudged the footing and ended up sitting on the step, I scared the support crew more than myself. Owen stayed pretty close after that one.
     
    I have had almost no fatigue reaction, so that means the training over the last few months has had an effect. The stiffness in the legs however started to be felt by dinner time yesterday. And I'm pretty stiff today but otherwise It's not been a problem. Whether I can do something like this more than 1 day in a row I don't know, it probably would not be wise, but I bet I'll do it at least once on this holiday.
  13. heathber
    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