heathber

Hi Pam, Good to have you back on the board/blog. I approve of stuffed animals especially where/when access to live animals is not easy. Thankfully I have a family/friends who think similarly I was given a great collection of soft toys while I was in rehab, I know they helped, the best was a full size articulated teddy bear that I called Lenin and kept in my hospital bed with me. don't let anyone shame you about bunny I like that she has her prayer beads as well. Hugs -Heather

Mixed news but yeah to kicking it to the curb!

My family call it exercising my stubborn. we are taught that being stubborn is a character flaw, but it's also the character trait that gets people through these sorts of challenges. NEVER SURRENDER!

You are right your immune system is not coping at the moment. Vitamins A,C,E Zinc and Echinachea may help and make sure you are getting enough rest but also some exercise (listen to the body about how much exercise is right). I also like Sue's suggestion of sitting in the sun and getting some vitamin D, if/when the weather allows. Take care of yourseld and I hope you kick it out soon!

You got this. Go Sue!

Hi Sue, I'm back on the medical roller coaster myself. Not as immediately dangerous as you are going through but sufficiently uncomfortable that what you say here resonates deeply. The issues in your "little" hospital appear to be endemic,I spent 5 days in the Alfred here in Melbourne and it was so frustrating seeing the nurses either unwilling or unable to answer call bells in a timely manner. However I did meet someone who's just starting on the brain injury recovery journey (she'd recently had a brain tumour removed) and she said it did her no end of good to share a room with me and see that recovery was possible if not perfect. we are still chatting via text as she has now moved on to a rehab centre. I do hope this new chapter of your life comes together for you soon. -Heather

Hi Chris, Nice to meet you. I meant to reply to your forum post, but for some reason it's locked and I can't. I love your signature "worry is a misuse of imagination" aint that the truth! I'm big on risk management, which uses the same sort of imagination but instead of worrying you make plans to deal with the what ifs. And for some things the plan is "forget about it and/or let someone else look after it" We are all Wonder Women in one way or another. Since I started on this particular journey many people have told me they can't understand how I do it "it's so hard!" my response and it suspect yours is very similar is "I do what I have to, there's not really any choice" OK so I'm now more limited in the way I can do things and I have to be more careful about how I tackle some things but that isn't a reason not to do or try new things. Life is for living so I get out there and live it. Yes sometimes I pay for my fun with fatigue etc. but its not like I don't know it's going to happen so that's a "risk" I need to plan for. I hope you enjoy this site there are some great people here! -Heather

These days I try to organise my vacations with a recovery vacation afterwards. e.g. after my NYC trip last July I went on a week long cruise before getting on the plane to come home. And just now I had 2 weeks off for xmas and new year so I went "hiking" for the first week and then snoozed at the family country place for the week after.

How far away is your son's house? can you take a taxi, or get a care worker to drive you? or even get you son to collect you the day before and stay overnight. I'm sure there is a way to do this you'll just have to get creative. But I feel your pain. hang in there.

yes you did

I accidentally created a second blog too, I never worked out how to delete it

That does seem to be how it goes in life. When you can't cope with more you get lumped with everything at once. Hang in there :) I've had that discussion with the panel shop myself. Thankfully they were a bit more accommodating than your guys seem to be although it sounds like your 2 weeks has become 4 days so maybe someone heard you. In my case being the strokee and completely dependent on my car to get around they got the parts in before I left the car with them. I can't use a hire car as I have to have special controls fitted and hire cars don't do that.

Thanks girls I knew people here would GET it

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.

Indeed Sue everyone has been telling me that since my stroke "Make haste a little more slowly please". But I was following instructions this time, I know that healing on the affected side is slower, but so does Paulo so when he took the dressings and stitches off and said go back to normal activity I did. Turns out we should have waited another 48 hours, oh well no harm done. And Lin we chatted via text for 4 nights in a row. I don't think I'm going to do more than that for the moment.

The surgery on the toes has been very successful so far, although I over stretched the wound the other day and it popped a little, so I'll probably get a scar from it now. ( Paulo will be disappointed, he tries so hard to make it an invisible scar) I did some walking tests at the gym last night and Quincee was very pleased, as I'm rolling over the toes cleanly. I feel a lot faster too. I'll be interested to do timed tests at the next spacticity clinic visit.

Main damage was to my pride Kelli, and some truly spectacular bruises on both my stomach and thighs. Just as well I was coming home to winter and I haven't worn a bikini in years anyway!

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.

I seems to be one of those things where the automatic muscles still work but the voluntary ones don't. So if I'm smiling because I'm just smiling it looks pretty normal. But if I'm smiling because some wants me to the left side of my face doesn't really respond. maybe because when you try to smile you concentrate on the mouth, but when you just smile lots of other things happen (particularly around your eyes) Pam I wouldn't worry about it, if you try to force it it will never look right so people will be just as "put off". Try not to think about it and just let it happen.

Hi Kelli, So glad you did this. My first alone plane trip after the stroke was scary but successful too and since then I've been overseas twice. You are so right that it's OK to ask for help and in fact many people offer it unasked. And there's no point in stressing so long as you have your phone and someone you can call if it all goes truly pear shaped. Next time will be easier. If you can do this without your glasses, think what you can do once you have them! Onwards and upwards!!

You got this Carol. There's lots of places still to go and things to do in them. So you do it differently you still do it! Enjoy -Heather

A friend of mine used to put herself into respite care, I think she used it as a way to explore nursing home life before she actually had no choice. When at home she had care workers coming in morning and night to get her out of and into bed and cook her evening meal, and assist with showering and dressing. Her adult son lived in the house with her but they chose not to have him do the actual care tasks. As she didn't want her disability to completely take over his life. Can you get a regular care worker to come in and do the larger/harder jobs so that you don't feel so overwhelmed? Or will having him do a nursing home "holiday" so you can get a break help? If you get someone to come in and sit with him for a few hours each week you can find something to do for yourself in that time such as joining a book group or art class or one of those other lost activities you miss. Burn out is real and you need to take action. -Heather

Hi Pam I say go for it!! What's wrong with a bright colour if it makes you feel good. Defy stereotypes, have fun, FEEL GOOD. They are just jealous that you have someone who will take you out of the box when they have to stay in. If you can start an Art Therapy program or encourage the management to arrange one that would be good for everyone. One of the best spots in my days when I was at inpatient rehab was art therapy. They had a dedicated art room with all the equipment and an art teacher with an assistant who came in for 2 hours twice a week and helped so that everyone could participate. and it's amazing what can be done with a glue stick and some scissors if someone isn't feeling up to fine work. They had some very clever stands to hold things so those of us limited to wheelchairs could draw comfortably and sessions were open to all areas of the hospital including the outpatients if they had a way to get there. Each year they hold an art show and they take a selection of the work created that year and get it properly framed and the artists all get invited to opening night. It was fun!

Oh Nancy, How horrible you must feel. Do not beat yourself up over this. Tell him NO you are not going to take him to the toilet your dinner will get cold, he needs to call the aid. If he has an objection to a particular aid then that's something you might be able to help him with, but he lives there now because you could no longer do this stuff for him and you are a visitor not an aid. He's trying to guilt trip you, don't succumb. Time for tough love. Point out to him that when he doesn't shower he's not nice to visit and next time you come if he hasn't showered you won't stay. and stick to it. You need to make sure that when you are there you do not do anything he should have an aid do. If he asks you to do something that an aid should do call the aid and step back until it's done. If he wants to play control games take back the power. When you visit you need to do the things the aids won't/can't like play games and go for a walk. Help him to distinguish between care activities and visiting activities Hugs its not a nice situation to be in. -Heather

Asha I would not be game without the expert help from the Program. It's called "Return to Running after Brain Injury" and was designed by a Specialist Physiotherapist here in Melbourne. He runs it through the outpatients service at one of our Hospitals. They offer 3 group sessions each week, I can only get to 1 a week as I work full time, they recommend you do 2 sessions a week, but as I also do homework with my gym trainers that's considered sufficient. The group is divided into 2, beginners work in the physio department with specially designed exercises to increase strength, balance and coordination as well as to develop fast twitch muscle responses, the more advanced group works outside either in the carpark or at a local park, working on stamina, agility drills and general technique.