You, Me & MND - Motor Neurone Disease
You, Me & MND - Motor Neurone Disease
  • Видео 42
  • Просмотров 18 949
NDIS Rejects Lift Request
29th July 2020 - NDIS Rejects Lift Request
NDIS rejects our request for a lift to give me continued access to our home.
We have had multiple builders, lift companies, stairlift suppliers and Occupational Therapists in our home since the diagnosis in January - all looking at our options for me to fully access our home as the MND progresses.
Every one who has come has come to the same conclusion- a lift is the only viable option for our house and in one position.
So we put the request in to NDIS thinking it is a no brainer.
NDIS said no.
Просмотров: 598

Видео

When I Fall
Просмотров 2,5 тыс.3 года назад
29th June 2020 - When I Fall Each time I fall the consequences and list of injuries are compounded. I am a constant rainbow of bruises at different stages of healing as well as varying stages of pain. It also adds to my fatigue levels. The most impact though is to the increasing levels of worry for me and concern for my family regarding the what ifs and what happens next time.
Meet Sco-Mo, My New Mobility Scooter
Просмотров 3763 года назад
14th July 2020 - Meet Sco-Mo - my new mobility scooter Meet Sco-Mo, my new mobility scooter. (BTW - all my sons are cringing at the name and plaintively crying “Why”? Between you and me this makes the choice of name even better for me 🤪😁
A Scary Night
Просмотров 3173 года назад
Sunday 21st June 2020 - AScary Night The first night I’ve stayed awake really worried due to the symptoms keeping me up and what this means about the progression of my MND.
A Rough Few Days
Просмотров 1883 года назад
16th June 2020 - A Rough Few Days A rough few days as I and the family face some hard realities regarding what the future, the near future, holds. PEG/PIG tubes - and who really has control of my treatment and journey through MND
11th June 2020 MND Clinic
Просмотров 1213 года назад
11 June 2020 - MND Clinic Today I attended an MND Clinic, via Telehealth due to COVID restrictions. This is run (for me) at the University of Canberra and is a few hours of seeing specialists relevant to MND one after another. Great set up to do it all at once, but can be confronting as you cover all the different effects and face up to the declines in the different parts of my body and ability.
May 2020 My First Wheelchair
Просмотров 1883 года назад
My first wheelchair May 2020 - I get my first wheelchair. I thought I’d struggle emotionally with this, but the feeling of freedom by getting across a room much faster, the lack of fatigue and feeling safer made me love it straight away.
26th May 2020 Lift Recliner Chair
Просмотров 423 года назад
Lift Recliner Chair - 26th May 2020 I now have a lift recliner chair due to the increasing difficulty in getting in and out of chairs and my lounge. It has made such a difference to my mobility, independence and fatigue levels. The chair and I have a love-hate relationship 😂
16 April 2020 - More on Fall Alert on Apple Watch
Просмотров 603 года назад
Fall Detection on the Apple Watch A bit about the fall detection on the Apple Watch I mentioned in our previous post. Note - I am not paid or endorsed to promote this watch 😆🤣
15 April 2020 - Stumbling and Falling
Просмотров 1273 года назад
Stumbling and Falling From loss of balance to stumbling in the early stages to hard falls - all within 6 months.
One Of The Things I Will Miss Out On
Просмотров 1594 года назад
Saturday 14th March 2020 As with a lot of unexpected moments, I had a realisation about the impacts of my diagnosis. I was lucky enough to go to the wedding of our oldest son’s friend and his beautiful bride. Our eldest was Best Man. Matt was sick, so my Mum came as my 1 and videographer 😂🙄 As you can see, there are some moments where the grieving for the things I will miss just hit - and this ...
Applying to My Superannuation Funds For My Terminal Illness Benefit
Просмотров 1044 года назад
Thursday 2nd April 2020 Applying to my Super Funds, PSSap and MSBS to access my Terminal Illness Benefit
An End To The Week That Gets Me Moving Forward
Просмотров 564 года назад
A new drug (Kivexa) added to my daily intake and finally had my initial NDIS Planning meeting - YAY! #Kivexa #MND #ALS
Finding Out I Need A Leg Brace
Просмотров 1494 года назад
Friday 27th March 2020 Off to Momentum Sports & Rehabilitation in Bruce, ACT to see about getting a leg brace to help my stability and walking gait.
It's a No for the Drug Trial
Просмотров 664 года назад
Wednesday 25th March 2020 After 10 days of doing everything possible to lower my AST levels I went for my final chance blood test 2 days ago. Today I heard the news..
Doing What I Can to Get On The Drug Trial
Просмотров 194 года назад
Doing What I Can to Get On The Drug Trial
Scuba Dive in the Bay of Islands, New Zealand
Просмотров 204 года назад
Scuba Dive in the Bay of Islands, New Zealand
The Reality of the Lifestyle Changes Needed
Просмотров 564 года назад
The Reality of the Lifestyle Changes Needed
Living Adventurously
Просмотров 384 года назад
Living Adventurously
The Support from Small Business Owners in Queanbeyan
Просмотров 154 года назад
The Support from Small Business Owners in Queanbeyan
The First Nail in my Coffin
Просмотров 834 года назад
The First Nail in my Coffin
Tests for the Drug Trial
Просмотров 254 года назад
Tests for the Drug Trial
Linked In to Community Health While Waiting for NDIS
Просмотров 204 года назад
Linked In to Community Health While Waiting for NDIS
Waiting for NDIS
Просмотров 284 года назад
Waiting for NDIS
Scripts, Medication and the PBS
Просмотров 254 года назад
Scripts, Medication and the PBS
Relaity Hits as I am Told to Close My Dream Business
Просмотров 404 года назад
Relaity Hits as I am Told to Close My Dream Business
Meeting my New Companion Candy
Просмотров 334 года назад
Meeting my New Companion Candy
The First Prescription Medications
Просмотров 504 года назад
The First Prescription Medications
Meeting Professor Dominic Rowe at Macquarie University Hospital
Просмотров 1574 года назад
Meeting Professor Dominic Rowe at Macquarie University Hospital
Telling the Family
Просмотров 1014 года назад
Telling the Family

Комментарии

  • @Raj-ul9my
    @Raj-ul9my 5 месяцев назад

    Must be hyperthyroidism

  • @jacquelinevazquez498
    @jacquelinevazquez498 Год назад

    That happens to me its so weird i thought i was pregnant again after i had my twins now the twitching is all over my body

  • @stepheniestacey4380
    @stepheniestacey4380 Год назад

    0:07

  • @kerrielee2830
    @kerrielee2830 Год назад

    Just wondering how ypu are doing now ?

  • @mindy9061
    @mindy9061 Год назад

    Would you mind giving an update? I only just came across your channel and have been catching up on all your videos. You are very brave 🙏

  • @alexandresouza1109
    @alexandresouza1109 2 года назад

    Drink water with molecular hydrogen ..The most alkalizing water there is... there is a device that, through the reaction of water with sodium bicarbonate and with two electrodes (one positive and one negative) with a source of 12 volts, produces the hydrogen gas that through a hose and channeled into a container with water. Water from this container (a glass for example) is rich with hydrogen atoms, making the water super alkalizing. The results in health are extraordinary... See Douglas Ormeneze's channel, he teaches how to make the device at home.

  • @alexandresouza1109
    @alexandresouza1109 2 года назад

    See the power of water with molecular hydrogen.

  • @RAINYDAYS00505
    @RAINYDAYS00505 2 года назад

    I have the basic fasciculations in my calves, feet, arms, chin and thumbs. But lately I have this shuddering, twitch like feeling all over my body. If you have clonus/brisk reflexes you might know the feeling you get when the doctor hits them...its like an all over shutter/shaking/twitching feeling. It's lasting hours at rest now. What is that?

  • @genu1nemonsta640
    @genu1nemonsta640 2 года назад

    So what was wrong?

  • @mikibernard746
    @mikibernard746 3 года назад

    Dear One, in nothing but love I must ask you the most important question of your life. The Million-Dollar Question: Will you go to Heaven when you die? Have you lied, stolen, used God's name in vain, or lusted (which Jesus said was adultery, Mt. 5:28)? If so, God sees you as a liar, thief, blasphemer and adulterer at heart. If you die in your sins, you will end up in a terrible place called Hell. But there is good news!!! Though we broke God's Law, Jesus paid the fine by dying on the cross: "God so loved the world that He gave His only begotten son, that whoever believes in Him should not perish but have everlasting life" (Jn. 3:16). Then Jesus rose from the dead and was seen by hundreds (It's no fairytale). He fulfilled all the prophecies of the promised Savior. Please, today, repent (confess and turn away from sin, you will be free of guilt and shame) and put your faith in Jesus Christ as the only one who can save you from the judgement of God through His sacrifice on the cross. This is so urgent. You do not know when your last breath will be. God will forgive you and grant you the gift of eternal life (Eph. 2:8,9). He will give you a new heart that desires what is pleasing to God and the Holy Spirit will live inside you as you are now a child of God. Then to show your gratitude, read the bible daily (God speaks to you personally through the scriptures) and obey it, join a Christian church and be baptized. I love you. I beg you. Do not delay. "The time is fulfilled, and the kingdom of God is at hand; repent and believe in The Gospel" Mark 1:15. This is a production of Living Waters Ministry LivingWaters.com Visit NeedGod.com

  • @MY-hy8bh
    @MY-hy8bh 3 года назад

    Actually i jst wanted to know that do you have your emg test and if yes then what was the result? Please share if possible

  • @MY-hy8bh
    @MY-hy8bh 3 года назад

    Whats your emg report says?

  • @MY-hy8bh
    @MY-hy8bh 3 года назад

    Did your diagnosis was confirmed by EMG?

  • @amandasmith749
    @amandasmith749 3 года назад

    I am listening to this and crying. Had this all over for 7months wrist are weak and arms , Happens when resting or sleeping. still waiting for a diagnosis . God bless

    • @MozertNery
      @MozertNery Год назад

      @amandasmith749 how are you doing?

    • @sniperreddragon2782
      @sniperreddragon2782 Год назад

      How are you?

    • @amandasmith749
      @amandasmith749 Год назад

      @@sniperreddragon2782 hi not to bad. Waiting for mri spine and brain

    • @sniperreddragon2782
      @sniperreddragon2782 Год назад

      @@amandasmith749 that's great to hear. I'm currently going through the same process. Had clear MRI and I am in 3 month waiting list to see a neurologist

    • @amandasmith749
      @amandasmith749 Год назад

      @@sniperreddragon2782 it's a a waiting game. My antiphospholipid syndrome they thi k is the cause. But we'll see

  • @adanoid
    @adanoid 3 года назад

    Good to hear your experiences. I fall quite a lot too. I’ve fallen thousands of times in the last 6 years but I fall like a feather or I have strong bones. Don’t no why but had lots of MND like symptoms like twitching muscles and great weakness in arms, hands and legs. However over time it got better and now I only fall when I do some walking at the shops etc.

  • @MichaelB-od3xh
    @MichaelB-od3xh 3 года назад

    Gonna pray for you. I watched some of your videos. Last update was from 8 months ago. How are you doing now? If you are able to do an update I'll hope you aren't progressing with your symptoms. You are an amazing woman.

  • @robertmacey5869
    @robertmacey5869 3 года назад

    Charlotte Martha BEWARE .

  • @lordzmusic8461
    @lordzmusic8461 3 года назад

    When are you diagnosed?

  • @charlottemartha4282
    @charlottemartha4282 3 года назад

    All thanks to doctor Ehimare on RUclips who cure my mum from ALS disease with the herbal products, God bless xx doctor.Ehimare on RUclips....

  • @barraqaalim7459
    @barraqaalim7459 3 года назад

    I had to always take mutum (pills) so I did not pee on my pants because I got so weak in my hands and legs as a result of the symptoms of this ALS disease. I depended on Walker to move a step after minutes of struggles with every step and moves. I also couldn't pick up a glass of water or anything that has weight because my hands were also weakened and twitching. I always felt sad and depressed with this disease because the doctor told us there is no cure and despite all efforts we made to help me improve I never got any better, I took riluzole to help me slow deterioration,he had to recommend a depression pill for me to always take when sad. I never imagined in my life that I could get any better and have this disease totally reversed with natural herbs. We got introduced to Doctor Okolo which has helped so many other people with this disease too but it got me skeptical at a point but still ordered his medicine. I was given instructions to use the medicine and within a few weeks on this medicine I could already feel back strength in my muscles, all twitching and vibrations in my body stopped completely and after a time I could walk without a Walker, all the symptoms completely started reversing gradually. I am completely strong now and I've only been on this herb for three weeks. I will recommend this herbal solution to you if you have or know anyone who struggles with this disease because it's very very effective. Contact DR Okolo on drokolosolutioncenter@gmail.com HIV/AIDS HERPES CANCER DIABETES Alzheimer NPH MND ETC

  • @genxmamabear5965
    @genxmamabear5965 3 года назад

    Sending you love ❤️

  • @genxmamabear5965
    @genxmamabear5965 3 года назад

    Thanks so much for doing this video. I’m looking for a fall detector for my dear old dad. This seems easy enough to use. And I just got him a new iPhone, so it makes sense to pair it with the watch. Thanks lovely Lady 🥰

  • @mimischateau_chic_9
    @mimischateau_chic_9 3 года назад

    I truly hope you’re doing well. Thank you for sharing your journey. I’m currently going through the diagnosis process, and it’s arduous and bloody scary. Sending you love and best wishes, from Leura in the Blue Mountains xx

  • @almaalondra9268
    @almaalondra9268 3 года назад

    Nice 36:14 🍌🍌🍌🍌

  • @GTschumacher
    @GTschumacher 3 года назад

    😥

  • @GTschumacher
    @GTschumacher 3 года назад

    That's scary, most doctors seem to think theres no pain with mnd,completely wrong ....

  • @GTschumacher
    @GTschumacher 4 года назад

    ruclips.net/video/3d_tg6iWyqU/видео.html

  • @GTschumacher
    @GTschumacher 4 года назад

    instagram.com/tv/CHdPkZPpnyI/?igshid=10oub707dfa75

  • @ultrabun6133
    @ultrabun6133 4 года назад

    Something that can help get rid of it is by sleeping better, find ways to be less stressed, and cutting back on alcohol or caffeine.

    • @MichaelB-od3xh
      @MichaelB-od3xh 3 года назад

      Do you know this is about her having ALS symptoms? Your ridiculous advice is just that, ridiculous as ALS is a terminal illness and cutting back on caffeine or alcohol will not lessen the muscle twitching smh. Good grief.

  • @GTschumacher
    @GTschumacher 4 года назад

    😥

  • @GTschumacher
    @GTschumacher 4 года назад

    Sorry to hear this.. stay positive the nurown treatment sounds like its getting close

  • @GTschumacher
    @GTschumacher 4 года назад

    I hope you dont mind me asking. When reading about mnd it never mentions pain, apart from cramps is it very painful?

  • @GTschumacher
    @GTschumacher 4 года назад

  • @GTschumacher
    @GTschumacher 4 года назад

    I had the same experience with my first neurologist.. awful person

    • @youmemnd-motorneuronedisea3621
      @youmemnd-motorneuronedisea3621 4 года назад

      I'm sorry you had the same experience - it is so frustrating and upsetting when this happens and to have to pay for the experience! I hope you have had better luck since.

    • @GTschumacher
      @GTschumacher 4 года назад

      @@youmemnd-motorneuronedisea3621 the second one years later was much better.. had the EMG and it showed nerve hyperexcitability.. that was 9 months ago and things getting worse still ..

  • @GTschumacher
    @GTschumacher 4 года назад

    Thank you for sharing your story ❤