ALS Warrior & LIFE student as a father, a son, a brother and a husband to my beloved caregiver !
Joined May 2021
- Tweets 388
- Following 361
- Followers 526
- Likes 749
37 Photos and videos
Pinned Tweet
3 Apr 2022
At 3.13 am (local time), i recalled greeting the birth of my princess 21 years ago. I am so happy that I got to celebrate her life and adulthood while i am still around. In the words of Brian Wallach famous saying "Not today ALS, not today.
Happy Birthday girl
#endALS #Hope4ALS
25 Mar 2022
This is my arm minutes after we welcomed our first daughter into the world in 2015. Nearly 7 years later the ink has faded but my love has only grown.
Not today ALS. Not today.
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13 May 2024
Yes we can make a change #Hope4ALS
13 May 2024
We would like to extend a great big THANK YOU to all the people living with ALS/MND and their caregivers who give their time and experiences to the fight against ALS/MND. 🙏 ❄️ ow.ly/LQN250Rzglw #ALSMNDWithoutBorders #ALSIceBucketChallenge #MNDIceBucketChallenge
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7 Mar 2024
Do you feel helpless and alone when you have ALS, worrying doesn't help. Live a little! Credit to Goosebumpcinema for sharing this snippet
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1 Dec 2023
One of the reason that I am unable to enjoy my motorized wheelchair when I have to air travel. Sigh, when will baggage handlers wake up that those are our only form of mobility? Please have mercy on our only form of movements. Let’s start to create awareness and educate #ALS
20 Nov 2023
Wheelchair users have been trying for ages to raise awareness about their wheelchairs being broken so often when they fly, and the devastating impact this has on them.
@AmericanAir baggage handlers decided to give a demonstration of how much they enjoy breaking them 😡
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18 Nov 2023
Covid for the 2nd time ! Back to drinking coconut water, Vitamin C, K2 D3, zinc and magnesium ! REPEAT. I pray that none of the pALS and their caregivers will not be a victim to this unseen monster !
#als #overcomingchallenges #MND
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18 Nov 2023
The dreadful 2 lines
The kind of positive that people hates !
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17 Nov 2023
"I love those who can smile in trouble, who can gather strength from distress, and grow brave by reflection. 'Tis the business of little minds to shrink, but they whose heart is firm, and whose conscience approves their conduct, will pursue their principles unto death.
-LeoDVinci
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A pALS Journey retweeted
16 Sep 2023
“The scene quite literally sets the stage for the rest of the person’s life”
A powerful session from @ALSMNDAlliance @MelindaSKav & colleagues - supporting clinicians to deliver news of #MND #ALS diagnosis. A journey #patients, #caregivers & healthcare teams travel together.
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1 Sep 2023
As a pALS, I have lost some friends when I stopped being the first to text them ! Is this statement true to some of us who are in this position ? We didn’t asked to be in this but we have to faced this ! #cruelALS #friendship #grateful #gratitude
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1 Sep 2023
Sometimes I do feel tired as it seems that I am the only person making the effort to keep in touch ! I always believed in the notion that friendship are mutual ! No one is too busy to call ! It’s a matter of priority #friendship
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31 Aug 2023
A very important event on the 7th September 2023
31 Aug 2023
NEXT WEEK: Join us for our next webinar, “Global Fundamental Rights Survey Results,” on September 7. Learn more about the data, strengths and weaknesses globally, the topics that require further attention, and how these compare to our 2021 survey.
🔗 ow.ly/zKyi50PAT0s
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24 Aug 2023
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23 Aug 2023
Marcey is now a lonely figure as she sleeps in a different place. I no longer able to spent as much time with her since making my bed downstairs. I miss you, Marcey ! #marcey #gooddog #furryfriend #loyal
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23 Aug 2023
This little ninja decided to make our house her home ! Loves high places to keep to her predatory skills. A bundle of joy as she terrorize the whole household ! #littleterror
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23 Aug 2023
It’s easier said than done but struggling through a dry spell when everything is so gloomy and future is so bleak ! Not gonna let this pull me down ! There are other important things for me to do still ! #Livethepresent #Hope4ALS
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23 Aug 2023
Spent some time chatting with a friend who is dying from late stage Liver cancer. Doctor has just given him until Oct or November 2022. We spoke and we both agreed that our life is in God’s hand not medical science ! #livingwithALS #Hope4ALS #NeverGiveUp #LiveLife
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15 Jun 2023
Maintaining my independence is now available on YouTube. Check it out today !
15 Jun 2023
Alliance Board Member Gudjon Sigurdsson and occupational therapist Sarah Solomon provide recommendations on how to maintain independence while living with ALS/MND in our latest webinar: Maintaining my Independence:
youtube.com/watch?v=E-ZY1rbn…
#ALSMNDWithoutBorders
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A pALS Journey retweeted
15 Jun 2023
Alliance Board Member Gudjon Sigurdsson and occupational therapist Sarah Solomon provide recommendations on how to maintain independence while living with ALS/MND in our latest webinar: Maintaining my Independence:
youtube.com/watch?v=E-ZY1rbn…
#ALSMNDWithoutBorders
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18 Apr 2023
Look out for this survey ! It’s happening next month !
18 Apr 2023
The Alliance supports fundamental rights for people living with ALS/MND and their Caregivers.
Our 2023 survey will open to all PALS & CALS worldwide in the first week of May. Stay tuned to our social channels for updates on how you can get involved.
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13 Mar 2023
Had the strangest dream last night where I met 2 men who have passed away - one (16/2/2016) and another (28/1/2021). When I try to approach the first, he refused to shake my extended hands - as though he is telling me something, while the second was just his usual casual self 1/2
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13 Mar 2023
I wonder why I have that dream ! What it meant to me ….The consolation is that I met someone dear who is still alive and kicking the in the same dream after that ! For those curios about the people that I saw in my dream - one was one mentor employer and the other my good bro
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13 Mar 2023
I will hold dear the memories that I have shared with them …. 3/3
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