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  • Kayleigh
    replied
    Hello Fru,

    I am so sorry to hear that things continue to be very tough for you and Ed.

    It is such a shame that the hospice won't have Ed to stay, as it sounds like some respite care would be ideal for him at the moment. You are a wonderful wife, always busy caring for your husband, and it sounds like you could do with more time to rest. Hopefully, the hospice will be able to offer some respite care, at some time in the near future.

    It must be very frustrating that although the NHS have provided carers twice a day, they can't be more helpful because you haven't been provided with the right equipment for moving Ed. Hopefully, your OT will be able to source some suitable equipment very soon.

    I feel for you and Ed, and it must have been a terrible shock for both of you when he fell from the Molift. Hopefully, Ed's GP is able to prescribe some effective painkilllers, if he is still in pain after falling.

    Also, if Ed is becoming distressed and having panic attacks regularly, there is probably some medication that his GP can prescribe, to make him feel more relaxed and less panicked about things.

    I hope you have support from family and/or friends close by. If I didn't have this wretched disease myself, I would offer to drive to where you live and help you out with things. I'm so sorry that I can't be more helpful with advice etc.

    Thinking of you and Ed, and hoping that his chest infection clears up and he feels better very soon.

    Love to you and Ed,
    Kayleigh x

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  • Fru
    replied
    Hello Kayleigh It's been a tough week. Molift raiser wasn't enough to support Ed and he slipped through. Used the Elk with a friend but Ed gets in terrible panics. Arranging for an Xray. Bed bound since last Monday night. NHS intermediate care coming in twice a day but can't do much as no equipment to move Ed. Awful chest. Local hospice wouldn't have Ed for respite while we stabilise things. I think it's going to be another busy day. I will start a new thread on update. Have a lovely day everyone
    Fru xx

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  • Kayleigh
    replied
    Hi Fru,

    I hope that Ed is feeling a bit better now and that his new bed is comfortable for him. Hopefully you are getting enough rest and sleep as well.

    Love and best wishes to you and Ed,

    Kayleigh x

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  • Kayleigh
    replied
    I agree with you Terry about the smaller portions. I have to eat slowly because my swallowing is not as good as it used to be. Sometimes a children's size ready meal is a good portion size for me - and I never have any problem eating a yummy chocolate mousse for afters!

    Love
    Kayleigh x

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  • Terry
    replied
    Hi Fru,

    When you eat slowly and don't have much of a appetite, a small plate of hot food is much better. Even if you give him a third of a normal helping it will remain hot and he will probably moan its not enough. Just blame me, laugh and get some more.

    A electric over blanket might be good especially if it's on a remote plug that he can turn off and on easily.

    My bed room is quite small as well but it has double doors into it.

    Love Terry

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  • Kayleigh
    replied
    Hi Fru,

    How are you and Ed? Hopefully, you are ok and Ed is feeling a bit better now that he has got a new bed.

    Like Ed, I don't have a very big appetite these days, and so have smaller meals and snacks throughout the day rather than big meals. I also have 1 nutrition shake a day.

    It is good to hear that Ed's ability to swallow is good, but just in case he does need to increase his calorie intake, I thought I would share with you how I increase my calories with smaller meals and snacks.

    I use butter, full-fat milk, cream and mayonnaise, instead of low calorie options. I find that individual pot desserts such as rice pudding, chocolate mousse, custard, cheesecake, and trifle are good as high calorie snacks and they don't take very much time or effort to eat.

    Sometimes, I have a small ready meal with some veg, and I pop some butter on the veg for extra calories. If I have a pasta meal like spaghetti bolognese, I put some grated cheese on it. I also like cheese spread, Nutella or smooth peanut butter on bread or toast. If I have stewed fruit or sponge puddings (sometimes I get individual puds that can be microwaved), I always add custard, cream or ice-cream to them.

    You probably already know about these ideas for increasing calorie intake, but I thought I'd share them with you, in case any of them are useful.

    I have to admit that it's taken some getting used to, having to go for the higher calorie options - because in the past I've been a regular member of slimming clubs, and had to watch my weight by going for the low calorie options!

    Hopefully, Ed is finding his new bed comfortable and is able to get a good night's sleep. I hope that you are able to get enough rest and sleep as well.

    Love and best wishes to you and Ed,
    Kayleigh x
    Last edited by Kayleigh; 24 January 2019, 16:34.

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  • Fru
    replied
    Hi Ellie,
    Yes, things have been a bit difficult! Ed is just exhausted and low but this goes in phases. The Molift sit to stand, is fine for the time being I think but Ed has to psych himself up for each transfer and there are several each day. Then he has a rest. He is worn out with sheer effort. I look on it as functional spacicity too. He is frightened of his knees giving way and I assure him all the time that he won't fall during a transfer. Some days whatever I say doesn't do much good.
    Thanks Ellie, Ed is taking the Baclofen again. He sopped it before because he was hallucinating. I think he should stick with it for a while as it is the GP's preferred choice. We will see how it goes. Ed doesn't move in bed either. I have been getting up to turn him.
    I think Ed gets cold because he doesn't move around much. I will look up the socks, thanks.
    This afternoon he had his first proper rest for ages. The bed arrived this morning! Well its a bit crowded in the room now as I have a put u up in there too. Never mind.
    Ed just doesn't feel like eating. Swallow is fine. He is supposed to have two shakes a day. Sometimes he has one. He is having small regular meals and snacks. He has what he wants when he wants. This means that he might just have soup and a roll to which I add neutral shake stuff. He has a little of whatever I make but doesn't like a plateful. He had half a plate of hot pot tonight with sprouts. I had the other half. Sometimes he just likes a filled baguette. I keep pot noodle type things in for those sort of days, for me.
    I think the bed will help him a lot.
    Love Fru xx

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  • Ellie
    replied
    Fru, I forgot to mention that Heat Holders socks are very good for keeping feet warm. They are quite thick but are 4.5 tog.

    I also like the men's Heatgen thermal socks from M&S. I find my feet fare better when my body is warm and I wear M&S women's Heatgen thermal long sleeved T-shirts everyday now as a base layer. They do men's too (and long johns, which I haven't tried!) They aren't sweaty like some thermals are and are thin.

    Any idea why Ed's not eating much - fatigue, constipation, sheer effort?

    Love Ellie.

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  • Ellie
    replied
    Sorry Ed's progression is continuing apace Fru - it's a v difficult stage he's in at the moment.

    Any idea what's replacing the Molift? From afar, I hope the OT is considering a sit-to-stand hoist, rather than a full-sling hoist, just because Ed's legs are strong, albeit due to spasticity. It doesn't really matter that his arms are weak as the sling supports his torso, but he needs to be able to sit up.

    It's this "functional spasticity" which allows me to still do standing transfers. I take Baclofen, the go-to antispasmodic med, but the trick is to land on the right dose and achieve a balance between function and comfort.

    I add Tizanidine, another antispasmodic, at bedtime as my spasticity is worse in bed because I don't move.

    Love Ellie.

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  • Fru
    replied
    Hi Ellie,
    Well, to be honest, nothing is improving at the moment. Ed's hands arms and upper body are affected and he is becoming weaker. We are going for respiratory check up again soon. Legs are absolutely solid. Trying to keep feet warm. Off food. OT coming next week. Bed and mattress arriving tomorrow and now at the end of using Molift raiser so new one coming shortly. This should hopefully help my back. Will talk to GP about something to help Ed for stiff legs. Any advice gratefully received
    Love Fru XX

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  • Ellie
    replied
    Sorry it didn't work out for Ed (& you!)

    Does he have RLS or was he trying Ropinirole for ALS in general?? Do you think his form improved because he was doing something, so to speak?

    I ask because I have RLS and take Pramipexole, which I find works very well.

    Love Ellie.

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  • Fru
    replied
    Yes Terry
    Asthma like side effects were on the list. This was a problem but it is winter and everyone with MND is different. It's hard to tell but we stuck to our agreement. The tablets didn't seem to be helping.
    Love Fru xx

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  • Terry
    replied
    Thanks Fru and Ed;

    Difficult to say about if it's the meds but you couldn't risk continuing especially if his breathing is affected.

    Love Terry

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  • Fru
    replied
    Here's my report on Ropinirole for 'restless legs'
    Ed tolerated 0.25mg with nothing to report, then 0.50mg and that was okay for about 3 weeks with still nothing to report, then the chills set in and asthma seemed to be worse. Stopped all meds for a couple of weeks and now fine. He seemed happy on the Ropinirole and talked much more than usual and had more interest in things in general but it didn't help his legs.
    The chills could have been a virus and Ed does use an inhaler and sometimes a nebulizer but it was agreed that Ed should stop taking the tablets if anything was different or if he seemed worse.
    He gave it a try!

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  • Fru
    replied
    Okay, it's a very long and complicated looking paper and very much over my head. If anyone would like to see it please pm with email.
    Best wishes
    Fru x

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