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Thread: Fasciculations, cramps, are they good or bad signs?

  1. #321
    Forum Member Barry52's Avatar
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    Hi Marieline,

    Northern India is very desert like so they use camels for transport. I don't recommend riding on an elephant as you sit high on a platform and there is nothing to hold onto. Going up a steep incline I finished the ride on my back. Needless to say I elected to take a bus back down the hill.
    Nothing so adventurous at the end of this month as we are taking a cruise around the Adriatic and the Mediterranean. I am looking forward to the hydrotherapy pool provided I can get in and out of it. Enjoy your cruise and we can compare notes afterwards.

    Best wishes
    Barry
    Life is a journey, not a destination.

  2. #322
    Forum Member marieline's Avatar
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    hehe, hi Barry, I have not stop talking about this cruise, constantly wanting infos or tips on how to make the best of it. My first cruise but i have been reassured that i will be well looked after. Sounds like the great adventure, cruising the mediterranean and adriatic in summer. Yes we must compare notes.
    My visit to india was in 2005, i travelled by train safer than the camel back
    I am lucky and touching wood that i can still access the pool independently. Every extra is a win. Just take it slow

    Best wishes Marieline

  3. #323
    Forum Member marieline's Avatar
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    MY RECENT HOSPITAL STINT

    Hello all, I came back from my 10day cruise all relaxed and well fed to sort out extra help with shopping and cleaning.
    You will see the Irony I had a meeting organised on the wednesday and fell on my right hip on the Tuesday evening. The loud crack was not a good sign but when i tried to hoist myself to the bed my right leg would not unfold.
    So if you live on your own, please have some emergency plan in place. I never thought i would have to wriggle on my butt to get to the living room to my phone to call for help. I have lucky for so long.
    I made it, i am still wondering how to this day, and once i was able to send a text to a friend, i had to wriggle to the door to open it.
    Luckily the friend i texted was already on the road on his way to dinner, so he was able to get to me and call an ambulance. i was very lucky in this instance but it could have been catastrophic. So my next step is to get emergency system in place.
    I had surgery the next day and i requested PROPOFOL to be used as muscle relaxant. The team of anaesthetists have never put an MND PATIENT to sleep before, so they were very excited and wanted to preempt all problems.
    The PROPOFOL experience was very interesting indeed, if it wasn't for my continued dysarthric speech, i swear i had no spasticity. Because i was communicating a lot in writing while in rehab, my handwriting was at the same speed as it was before the mnd. I experienced no chocking, laryngeal spasm for 3weeks. only this week have i choked once and had a mild attack of laryngeal spasm.
    If this PROPOFOL can make someone forget that they have MND for nearly 4 weeks, i wonder if it should be looked into as an alternative to Baclofen or other muscle relaxant used in MND.
    Anyway i thought i would share the good part of my bad news, iin case you find yourself in need of general anaesthesia and would wish to try the PROPOFOL EXPERIENCE.
    I have been bak home now for 2 weeks, continuing my independent life, but having learned my lesson the hard way i now use a Zimmer frame to move around, and would most like keep on doing so even after i am fully healed. One stay in hospital is more than enough ....

    Best wishes to you all Marieline

  4. #324
    Forum Member Terry's Avatar
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    Hi Marieline;

    Sorry to hear of your fall and troubles after that. I am not alone for long normally, perhaps 4 hour occasionally. I keep a old mobile phone on my walker and have a phone by my chair.

    You can also get a key safe for the outside of your house that has code buttons.

    Like the idea of Propofol, possibly like you my muscle spasms have caused a major problem after a fall as I can not relax them.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keeps us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  5. #325
    Forum Member Barry52's Avatar
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    Hi Marieline,

    I'm sorry you ended up in hospital and hope you recover soon. It sounds like you enjoyed the cruise and you must tell me the highlights.

    I am also alone much of the time and I have an alarm pendant linked to my phone. The service provider can contact my wife or daughters for assistance. Like Terry advises I also have a key box outside so anyone with the code can gain entry into my house. Like you I did all of this as an afterthought following 10 days in hospital and I now use my walker indoor and outdoor.

    Barry x
    Life is a journey, not a destination.

  6. #326
    Forum Member marieline's Avatar
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    Yes great advice terry and barry,
    I am looking at mobile medical alert device. I can wear it as a watch and it is waterproof, so i do not have to remove it. There is only me, in a 1bedroom flat, my living arrangement i'm afraid is not going to change unless i win the lottery.
    The funny thing is the week i decided to order a mobile phone to have on me all the time is actually the week i broke my hip. maybe subconsciously i jinxed myself haha.
    Anyway there was some good that came out, for example i cut keys for a couple of friends, will be using a walking indoor from now on.
    I am going to keep the cleaning service, i just realised that the cleaning lady did in 1hr what usually take me several days.
    so i believe i deserved the reality check.
    Yes the Propofol is promising for those of us who have the spasticity version of the MND. But how to get actually find a neurologist who would want to trial it.
    In time like this i miss Ray, because he was good at research. Propofol being of the Benzodiazepine, i cannot help wondering that there might be other drugs in the group that can have similar effect.
    The good thing with Propofol is the effect is instant and has lasted nearly 1 month. Many of us could probably the workforce again.
    The strange coincidence is THERE HAS BEEN NO FASCICULATION. What does this mean? I understand some of us do not experience fasciculations, but i have been plagued by this symptom from the beginning and it never eased for more than a couple of days or 1 week at best.
    I have questions, many questions.
    Best wishes Marieline

  7. #327
    Forum Member marieline's Avatar
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    Hi Barry,
    The 10 day cruise was great adventure. I expected a floating hotel, but found out very early that cruise ship rocks in rough Ocean and the Indian Ocean get rough.
    I got very seasick on the very last night, as we had 5 metre swells, and it was rough, i doubt many enjoyed the parties and shows.
    I will personally recommend it. the entertainments were really world class, i could indulge in live jazz and blues every night after dinner.
    I was able to tick off a bucket list item off, i went dancing with my walker as partner to Abba music.
    I never got to ride my camel but got to hang out on Cable beach to watch the sun set. Simply a special moment in time.
    if it wasn't for the rough ocean i would most like be planning my next cruise, but seasickness sucks!
    How was your grand adventure, do share please
    Best wishes Marie

  8. #328
    Forum Member Barry52's Avatar
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    Hi Marieline,

    The cessation of fasciculations may just be a coincidence as mine stopped a few months ago, although I have now developed an annoying tremor in my hands which makes typing slow.

    Unlike you my cruise in the eastern Mediterranean was blessed with calm seas and I managed 6 out of the 9 shore trips using my walker and only 1 fall with minor injuries. As a former pleasure sailor I seem to be immune from sea sickness but I sympathise with you as I understand it is not a pleasant experience. I'm pleased you gave the camel ride a miss since it was before MND that I did it and I was lucky to stay in the saddle then.

    Stay safe.

    Barry x
    Life is a journey, not a destination.

  9. #329
    Forum Member marieline's Avatar
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    haha Barry,
    ISounds like you had a wonderful holiday, calm seas, the Indian Ocean is very rough, i just did not think it would sway a big ship . You did better than me tour - wise, i only did 1 shore trip out of 4, but did not feel too bad about it as i already visited those places before. One could get use to the cruise lifestyle, but i am afraid, 10days was a bit much for me, perhaps shorter ones in calmer seas.
    I envied all the people who were camel riding on Cable Beach, i couldn't help feeling like a chicken! Perhaps if the opportunity arose again one day, i might cease it.
    I have had those tremors in my digits as well, i think it is just another aspect of spasticity. i just stretch my hands and digits a few times a day. it can be annoying to pick stuff off the floor and chop stuff, but i do not think that it is harmful.
    I tend to increase my magnesium intake to twice a day when this happen. do not let the tremors stop you from your routine activities, just work with the constraint.
    Patience will get you there

  10. #330
    Forum Member marieline's Avatar
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    I have been thinking a lot about Fishmates recently, our grumpy researcher. I missed his hunger, his passion and his single mindedness. He was not one to be politically correct, but he came up with so much datas and infos for us.
    I couldn't help wanting to pay hommage to him. I continue to peruse his post whenever i get some times.
    My last stint and only hospital stint, made me realised that i want to try harder to keep this body functioning as best as i can.
    One extra bit of info that i learned in the operating theatre is that anaesthesia tends to lower blood pressure of MND sufferers, so i was in luck since my blood pressure has always been high.
    Funnily enough, my blood pressure has been normal and has stayed within the normal range ever since. Now i am thinking perhaps the blood thinner has something to do with this.
    There is so much about MND being a disease that affects motor nerves that is not yet verified, for example does it influence the sympathetic and parasympathetic nervous system?
    The fact that my blood pressure is now normal after being morbidly high for so long could be pure coincidence or the influence of Propofol.
    I can't help having many questions though. On days like this i miss having Ray around to toss my questions to.

    It's raining and it's cold, here in Perth and so a lot more time for deep thinking.
    Best wishes to all, i need a bit of sun.
    Marie

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