Page 3 of 7 FirstFirst 12345 ... LastLast
Results 21 to 30 of 64

Thread: Partner Has Mnd symptoms Any help

  1. #21
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    661
    Good evening Emma. We bought suction grab rails from Amazon. They are not meant to be permanent as they do work loose which could be dangerous. I had them in the bathroom of our previous house until the local services installed permanent ones. We took them on holiday last year and were invaluable making it possible for me to use the shower. I have them in my wet-room now awaiting the services to come out to do permanent ones. You shouldn't have to purchase a wheelchair because local services ought to provide a manual portable wheelchair in the first instance and a power wheelchair when walking indoors and out becomes impossible. Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  2. #22
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    661
    Hi Kayleigh, about whether or not an brain MRI can detect MND. Mine was almost conclusive showing my anteria horns showed some kind of degeneration but nerve conduction tests were ordered so as to be definitive. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  3. #23
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Location
    England
    Posts
    732
    That's interesting Lynne. Thank you for letting us know.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  4. #24
    Forum Member
    Join Date
    Dec 2018
    Posts
    48
    morning lynn
    just bought suction grabs from amazon ,thanks for the tip.
    it will make it easier for him to balance.
    must say its an awful waiting game, im still unsure of what is causing his symptoms
    i'll try and keep myself busy until he had his MRI
    emma
    x

  5. #25
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,527
    Hi Emma;

    I have found that suction grip can come off. Even on clean surfaces. I have had one of the ends come off quite a few times.

    Your OT should supply and possibly install the screwed ones where you need them. Sometimes best to try out different positions using suction ones so you know whats best for your situation.

    Love Terry

  6. #26
    Forum Member
    Join Date
    Dec 2018
    Posts
    48
    hi terry
    thanks
    we don't have a OT at the moment, as the neurosurgeon who saw us wasn't sure, what at all what my hubby has
    he ordered the mri scan, to see if there is something going on in his brain or his spine, before he said if its clear then its time for more test
    love
    emma x

  7. #27
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,978
    An MRI of the brain cannot detect damage due to ALS yet - FTD damage, yes.

    Anterior Horn cells are located in the spinal cord, so an MRI of (part of) the spinal cord has the potential to show damage to this area.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #28
    Forum Member
    Join Date
    May 2018
    Posts
    303
    Hi Emma,

    Sorry for your uncertainty.The waiting for tests and then results is really stressful.
    Before I was diagnosed I had spine and brain MRIs, a lumbar puncture and numerous x rays. and blood tests but this was to rule out other reasons for my leg weakness. At this stage I did push for their opinion and the neurologist said he thought it was an MND, because everything else had been ruled out. ( MY fault for asking . He did say most people don't want to know at this stage) It was confirmed after an EMG and nerve conduction tests but even then I was referred for a second opinion from another MND neurologist. The EMG and NCT were repeated and the second neurologist thought it was a different variant of MND , although she said it could become ALS. It is really hard to diagnose because everyone is different and we have other health issues that can confuse things. I have always had a bad back so initially my GP thought that was causing problems. Ironically it is fine now because I am not bending and lifting. It is a long and frustrating route to diagnosis but once I knew there was lots of advice and practical support. Also I stoped trying to struggle to do things that were really not possible.

    As Terry said be careful with suction handles. Before we had our bathroom adapted I used to steady myself on our heated towel rail ! It really wasn't my best idea as we both ended up on the floor.

    Take Care and I hope you have some answers soon and it is not bad news.
    Love Debbie x

  9. #29
    Forum Member
    Join Date
    Dec 2018
    Posts
    48
    hi debbie
    thanks very much ,your message was a great help and comfort
    i know exactly about the bathroom heater
    the other half, has it nearly hanging of the wall,hence the suction grips
    thanks
    emma x

  10. #30
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Location
    England
    Posts
    732
    Hello Emma,

    I used the grab rails with suction grips in my shower, before permanent grab rails were put in. The temporary ones can come lose and fall off but I found them ok to use as long as my husband made sure that they were securely attached, every day just before I had my shower. He found that putting a small amount of water on the pads helped with the suction.

    Terry mentioned that an Occupational Therapist (OT) is the person to speak to about any house adaptations (such as permanent grab rails) that could be paid for and installed by your local authority. Your husband should also have an assessment for a wheelchair, provided by your local authority. Your husband might get an OT assigned to him in future, but this might depend on what his diagnosis is.

    As your husband's mobility is already being affected by problems with his health, he might already be entitled to an assessment for a wheelchair and also an assessment for house adaptations? - someone else on this forum might know whether he is - or this information might be on your council/local authority's website?

    Love Kayleigh xx
    Last edited by Kayleigh; 14th December 2018 at 16:35.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •