heathber

Hi Paul, I want to send you ((HUGS)) first. It sounds like you are doing it very tough at the moment and lockdown won't be helping that for either of you. I don't think I have memory issues so not sure if any suggestions I make will make sense or not. My first instinct is that you should keep/start a journal. Write down the jobs/tasks to do and the subtasks needed to complete them. I do this for my work and keep both a reference copy and an active copy where I cross off what has been done. My go to is always lists. Also try keeping a record of how you're feeling and what happened to get you to that feeling if possible. You might chose to share this with Linda so that she can help you sort out real and false memories, and she could even record her side of the event next to yours so you can go back to it when you need to be reminded. It might be worth investigating living with Altzymers or dementia sites to see if they have any techniques that might be useful to you as well. It is not an easy situation to be in but hang in there, it may not be as bad as it seems right now either. I don't know what your restrictions are at the moment. But try to make a point of getting out of the house for at least 30 minutes a day as much as possible, walk around the block or work in your garden or shovel snow whatever is appropriate for where you live. My grans cure for the downs was always sunshine and exercise. And she used to read this to us if she thought we needed reminding. The Camel's hump is an ugly lump Which well you may see at the Zoo; But uglier yet is the hump we get From having too little to do. Kiddies and grown-ups too-oo-oo, If we haven't enough to do-oo-oo, We get the hump -- Cameelious hump -- The hump that is black and blue! We climb out of bed with a frouzly head, And a snarly-yarly voice. We shiver and scowl and we grunt and we growl At our bath and our boots and our toys; And there ought to be a corner for me (And I know' there is one for you) When we get the hump -- Cameelious hump -- The hump that is black and blue! The cure for this ill is not to sit still, Or frowst with a book by the fire; But to take a large hoe and a shovel also, And dig till you gently perspire; And then you will find that the sun and the wind, And the Djinn of the Garden too, Have lifted the hump -- The horrible hump -- The hump that is black and blue! I get it as well as you-oo-oo -- If I haven't enough to do-oo-oo! We all get hump -- Cameelious hump -- Kiddies and grown-ups too! Its one that is far too true a lot of the time. -Heather

Hi LG so glad to hear that you have found the good place. Acceptance is something that gets talked about a lot here. Being able to separate the illness from the person you love(d) is not easy but as you have discovered it is possible and good for you both. It is about the feelings and the way you remember not about the physical body. Glad you have decided to take him home even if he never really knew that home. The man you loved lost himself in the illness and you nearly did too. (((HUGS))) Take care during this difficult time. Heather

Yes on the when you can't stop it it's better to roll with it, literally if possible. It was one of the ways I knew my propriaception was improving. Early on I would not know I was falling, I would just suddenly be on the ground going "what the H happened?" Over time I have learned to notice when a fall is happening, sometimes I can recover it, but often it's a case of going "too late, here we go, curl".

Nice to know you are all getting along, and Bella got to stay. Welcome to the crazy cat lady society

Sounds lovely fingers crossed you have a good day.

That makes sense. It wasn't that the rug moved it was that you couldn't/didn't get the weight transfer onto the front of the foot in time with the rest of your body. Don't you hate that feeling of "oh crap here we go" where you know you've lost it and you are going down no matter what you do. Sounds like you managed to be relatively dignified with it though.

time to get the non slip stuff under that rug!

my OT has just ordered me a "toe washer" from the Ability store. It's a washer/sponge on a long stick, designed for cleaning between the toes while sitting or standing. will let you know how it goes once it arrives. But dirty feet is easier to deal with than shoes a lot of the time 🙂

The hard part here is that you have to wait for them to find him a place. You can't just walk away now which is what you really need to do. If they don't have a permanent place for him, can you get him a respite placement for a few weeks to give you some space and peace to plan? You need to find a way to make finding him a placement urgent. I suppose you could just pack your things and leave and then call social services and let them know he is alone and unable to care for himself. The question is could you live with yourself if you did that? A break up is hard enough at the best of times but even harder when you are stuck under the same roof and one party can't or won't abide by peaceful coexistence "rules" Sending love and hugs to you -Heather

So Sorry to hear that Steve has passed. I do hope Missy knows that he made a difference to many many lives all across the world, and his legacy shall continue. ((HUGS)) for his family in this hard time. -Heather

Can't help with a facility recommendation as I live on the other side of the world. But I've done lots of work on physio using various unstable platforms from foam mats and wobble boards through to Bosu (half ball) for balance and reaction training. It's very tricky if your ankle is weak and/or unresponsive and your propriaception (knowledge of where you really are in space) is slow. The most useful I've found is obstacle courses where your therapist sets up a series of things for you to walk over, around or through in a pattern. When I get too good at it, they deliberately made it harder by putting things under gym mats then I had to walk over the top of without knowing what was underneath or where it was. A hospital setting is unlikely to do this though as they see it as too high risk. I did it at my studio gym where they are much less scared about bureaucratic paperwork if/when you fall. You see I expect to fall when I'm pushing my limits. You don't know where your limits are if you don't push against them, but that doesn't mean be stupid. I prefer to fall in a controlled environment, where I know there is someone to help me up again, or to hold my hand so I don't actually go over. Thankfully I haven't had vertigo but I know that there is specific retraining involved in overcoming it, not something you should really attempt on your own (risk management again). Good luck with your new therapy. Also, while the brace is great for daily activities and your overall safety and comfort remember that while you are using it the muscles/nerves etc. it is replacing get a free ride and will not be working so long term use will actually reduce your function when the brace is not available, e.g. night bathroom trips. Make a point of not using it for a couple of hours each day and when you are doing your therapy (unless your therapist says otherwise, of course)

That is a tomato marathon! Fingers crossed for a harvest that matches your efforts once the weather allows. Having your French audio books in the greenhouse while you work is a great idea. Congrats on the vaccine, roll out of vaccine here is just starting, I'm in third wave, so will be a few months off. Global news on the effects is looking good.

LG, you are not being selfish, well no more selfish than a person needs to be, you are important too. Don't ever forget that you are worthy of respect and help and what he is doing is NOT ACCEPTABLE and it is not your fault! It may not be his fault either, but its not something that can be changed. Don't be guilted into being a victim. Your survival is as important as his. You are a worthy human being and the fact you are agonising over this proves it. ((HUGS)) Heather

Happy to provide moral support whenever needed Tracy, and yes Sanity needs (craft supplies) are needs although you do need to remember they are also treats and be sparing. ((HUGS)) Heather

((HUGS)) There is nothing more to say.

Wonderful news Sue and I do hope you manage to plan a holiday soon. Although all these snap closures suck, hopefully once they get the quarantine workers vaccinated the frequency of escaping virus is going to reduce and we'll be able to move around more. I want to go to WA in November so I'm watching all this with baited breath, will need to have a plan B ready for if I get caught out. But I'm trying not to let the uncertainty stop me. -Heather

((HUGS)) Like getting a pet put down when they are really sick and there's nothing more you can do, when you know you know and even though it hurts it's actually a great relief. Take care And I hope you don't have to wait too long to find a placement.

An occasional indulgence needs to be enjoyed, don't feel guilty about it that defeats the purpose. It's when the occasion is too often that you run into problems, especially in lockdown/isolation where bad habits are too easy to form. (yes this is the voice of experience but I also refuse to hate on myself)

Hi LG it sounds like you have the perfect spot for where you need to be right now. All your activities sound like fun and you certainly will have enough to keep you busy. I want more info on your robot! Is it also going to clean house for you. It certainly needs to screen your phone calls, and monitor the state of your fences (either fix them itself or let you know when it needs doing). At the family property where I run away to when I can, we have constant issues with the weather dropping trees across either our access tracks or the fences. One of my jobs when staying there is to walk the boundaries and tracks, and report back to Dad on work that's required. Will the robot make friends with the wildlife on your property? and will it let us come visit if we ever end up in your part of the world? Just remember that some social interaction is good for you. But enjoy hermitting for a while if its what you need at the moment. So nice to hear from you again. Please keep us posted. -Heather

Looks great Kev. My physio had me doing "jockey" squats yesterday. was interesting. I had to sit astride a large foam roll and do squeeze and release of the knees and then tuck my feet back behind my knees and do partial lifts. I hadn't ridden a horse for years before my stroke and I'm not likely to again any time soon. But I have greater respect for those that do now I've been reminded what is needed.

fingers crossed for new med to continue to bring relief. Also note I don't have Raynauds, but post stroke the circulation in my left (affected side) foot is really funny, it now mimics mild Raynauds, My foot turns blue or purple if I don't wear socks or don't walk around enough. I also have constant problems with my toes. They are badly affected by spacticity and curling under, and often hurt a lot like they are bruised. Anyway what I'm saying is that If something like what I get is happening to you on top of real Raynauds its going to be extra nasty. Sending Hugs. I do hope your HOA eventually decides that Solar is worth the effort. If there are enough of you it should also be economic to have solar fed battery for after hours use too. Heather

yes it's about finding the balance point. enough that it feels like you did something, but not too much so you are stuffed afterward. Janelle the point of having the bike at home is that you can do a couple of minutes at a time without having to make a special trip. I'm trying to add pool time to my exercise schedule at the moment and even with the pool just downstairs I hate to get in for less than 30 minutes, the work required to change, shower, wash bathers and towel etc. is the same for 2 minutes as it is for 2 hours, so knowing that I can't manage more than 20 minutes at the moment without consequences makes it very hard to keep my commitment to myself. try using the bike for 2 minutes at a time, or even only 30 seconds if that's all you can manage, start with that once a day and then once it doesn't wipe you out try twice a day, you will find that what you can do increases and it'll make you feel less guilty. hugs and stat safe from fires -Heather

Fingers and toes crossed WA gets proper rain soon! 💜💗💜

Hi Asha, Glad to hear that the Dec 2020 event has been resolved and was not another stroke. Fingers crossed no more seizures, that is scary. If people don't respect your boundaries on Facebook or anywhere else, blocking them is the right thing to do. take care and hugs -Heather

The measure my physio uses with me in this stage of recovery is "did the extra push through affect you for more than the day you did it?" i.e. if it stopped you sleeping that night or meant your daily activities the next day were effected then you pushed too far. I do find I sometimes get so tired I can't sleep which sounds weird but is what happens. This doesn't mean I don't do things it just means I need to allow myself a little slack occasionally and be prepared for consequences when I increase loads or push limits.