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  • Deb
    replied
    Thanks for your support, Kayleigh and Ellie,

    Kayleigh, Each different stage is really difficult. I was struggling around the house using my rollator, with obviously no free hands because I didn't want to "give in ". I had a joint visit a couple of weeks ago from the mnd physio and OT they said politely that it is all about making life easier but more importantly safer. I think they had a tip off and I have a suspect !

    I now use my electric wheelchair around the house and my walker to transfer. It's so much better because my hands are free and I can get things I need independently and reach the kitchen counter for things. I also feel much safer if I am on my own. I do need to stop our grown up sons, who are old enough to know better, doing slalom and obstacle courses but it is very funny.

    At this stage ,its so important to avoid a fall and a break. Hope I am not tempting fate.

    Ellie, thanks for your advice. I hope your toe nails grew back. That must have been soo annoying and painful.

    Love Debbie x

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  • Kayleigh
    replied
    Hi Debbie,

    Like you, I also like dashing around the kitchen in my wheelchair (and delegation is an art I'm getting quite good at these days!). When I'm in the kitchen by myself I whizz around at top speed, but when my family are kindly helping me, I have to slow down - in case I run over their feet! I have always enjoyed cooking and baking and am a bit sad that I can't do so much of it these days (due to weaker hands) but I am lucky that I have got lots of handy kitchen gadgets to make things a bit easier (and according to my husband, perhaps too many! Lol ), and I am also blessed with family and friends who are always willing to help.

    I hope you and your family have a wonderful evening. We are having family over for a pizza and salad buffet (we'll make the salad, but will be a bit lazy by ordering the pizza from Domino's !). I am also looking forward to watching Dancing on Ice this evening - although it will probably be a bit 'quieter' now that Gemma Collins is no longer in it!

    I was thinking that trying out Botox on one toe was a bit like doing a 'patch test' when trying out hair dye, to make sure you don't have any adverse reactions - but Botox isn't something I know a lot about - and so, thank you Ellie for sharing your expertise!

    Kayleigh xx

    P.S. Due to weakness in my legs, I find using my wheelchair is much easier now than using the rollator. It worries me about my legs getting worse, but it helps a lot knowing that you and other folk on this forum have an understanding of what I am going through - big hugs to you and everyone in this forum family xx
    Last edited by Kayleigh; 17 February 2019, 20:40.

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  • Ellie
    replied
    Don't apologise for your woes Debbie, it's often the little things that are most disruptive to us.

    I had to have my big toenail removed twice and it stumped me each time (no pun intended) And I know Terry's toes and a sensitive tooth drive him mad too - it's all relative!!

    Love Ellie.

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  • Deb
    replied
    Thanks Ellie,

    I hope to give it a go.. its definitely worth a try and it's good to know that you got some benefit.

    It seems strange that with all the challenges of MND it is my toes that are causing the pain and stopping me using my rollator in the house. I feel like a should just get on with it because I know others have far more to deal with but if there is something that could help it's worth it.

    Love Debbie x

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  • Ellie
    replied
    The reason Botox is given conservatively initially is to make sure the correct dose is given and the desired results are achievable - nothing ventured, nothing gained

    I hope your consultant says to give it a go and you get as much benefit from it as I did!

    Love Ellie.

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  • Deb
    replied
    Hi Kayleigh, Thank you for googling ideas for me.

    I watched the voice last night... I love Tom Jones but I think hes had botox. He looks younger now than he did 20 years ago. He can't smile or frown but he can really still sing !

    Hope you're having a good weekend too. We are having all the family for super because it is easier for them to come to us.. I am going to whizz around the kitchen in my wheelchair, supervising the cooking !!!

    Enjoy watching Sir Tom,
    Love Debbie x

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  • Kayleigh
    replied
    Hi Debbie,

    A good idea that they try the Botox out on one toe first, just in case there's an allergic reaction.

    I'm watching The Voice on ITV+1 at the moment. Sir Tom looks younger and more handsome every week! - I wonder if he's ever had Botox?LOL

    I hope you and your family are having a lovely weekend.

    Love
    Kayleigh x

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  • Deb
    replied
    Thanks everyone for your advice and support.. what knowledge there is on here !

    I have tried to straighteners but it does make them ache. It was the MND consultant who first suggested it and the physio said it was worth a go. I have clinic in a few weeks so I will ask again. Apparently there is a doctor trained in botox there and initially they just do one toe.

    My toes have never had such attention. Shame it's not for a spa pedicure.

    Thanks for your replies,
    Love Debbie x

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  • Ellie
    replied
    Hi Debbie,

    Yes I had Botox to relieve muscle contractures in my feet and it certainly helped. It lasts about 3 months.

    The Physiotherapist in my MND Clinic is trained in giving Botox. It's important to have it done by someone who knows exactly what they are doing - how much Botox to use, where to inject etc.

    For the first time, they'll probably be conservative on the dose - I got half dose initially. And I had mine with an EMG needle to identify the best place in the muscle into which the Botox should be injected.

    If you have any questions, ask away!

    Love Ellie.

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  • Terry
    replied
    Hi Debbie,

    I would not be worried much by infection as many people on the have had it.

    But as Doug says, ask what your specialist thinks. I don't think that it would be much good In stopping curling but it's just my uneducated opinion.

    Love Terry

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  • Kayleigh
    replied
    Hi Debbie

    I've been searching the Internet for an alternative option to Botox for uncurling toes. There seems to be more available for uncurling fingers - but perhaps something like these would help?:-

    https://www.feetfeet.co.uk/products/...hoCtxgQAvD_BwE

    I havn't used them, but someone else on the forum might know if they are effective (it could be that they are good for separating toes, but not so good for straightening them).

    Love
    Kayleigh x
    Last edited by Kayleigh; 17 February 2019, 00:02.

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  • Guest's Avatar
    Guest replied
    Hi Deb

    Be careful with Botox, I know people with ALS/MND use it to help with symptoms, but it is filled with toxins, maybe see if the side effects outweigh the benefits.

    My friend use to have Botox parties and women would come and get their faces injected with it. I would go to the party for the fun of a party, but never inject myself with the stuff. I'm not into that kind of stuff because I don't trust the pharmaceutical companies to be truthful where money and greed is involved and what the long term effects could be.

    Just a little info on Botox.

    CCxx

    ***
    What is Botox?

    Botox (onabotulinumtoxinA) is made from the bacteria that causes botulism. Botulinum toxin blocks nerve activity in the muscles.
    Botox is used in adults to treat cervical dystonia (severe spasms in the neck muscles), or muscle stiffness in the elbows, wrists, fingers, ankles, or toes. It is also used to treat severe underarm sweating (hyperhidrosis).

    Botox is also used in adults to treat overactive bladder and incontinence (urine leakage) caused by nerve disorders such as spinal cord injury or multiple sclerosis.

    Botox is also used in adults to prevent chronic migraine headaches in adults who have migraines for more than 15 days per month, each lasting 4 hours or longer. This medicine should not be used to treat a common tension headache.

    Botox is also used to treat certain eye muscle conditions caused by nerve disorders in adults and children who are at least 12 years old. This includes uncontrolled blinking or spasm of the eyelids, and a condition in which the eyes do not point in the same direction.

    Botox Cosmetic is used to temporarily lessen the appearance of facial wrinkles in adults.


    Important Information

    You should not use Botox if you have an infection in the area where the medicine will be injected. This medicine should not be used to treat overactive bladder or incontinence if you have a current bladder infection or if you are unable to urinate (unless you routinely use a catheter).
    The botulinum toxin contained in Botox can spread to other body areas beyond where it was injected. This can cause serious life-threatening side effects.

    Botox is made from donated human plasma and may contain viruses or other infectious agents. Donated plasma is tested and treated to reduce the risk of contamination, but there is still a small possibility it could transmit disease. Ask your doctor about any possible risk.

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  • Jaxx
    replied
    My daughter just had Botox injected into her salivary glands to hopefully cut down on excess saliva.

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  • Doug Carpenter
    replied
    Hi Debbie

    Do discuss with your MND consultant beforehand.

    Doug

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  • Terry
    replied
    Hi Debbie;

    I know something of the problem but mine is not so bad and I can live with it.

    I think that they would be injecting toes to straighten them up a bit. I have never heard of this before but it could make a lot of difference. It might work on my toes as they don't have much integrity. I also think that the muscles that control your toes are elsewhere.

    Maybe try it out on a few of them.

    Love Terry

    Leave a comment:

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