Du har lämnat ett stort tomrum efter dig mamma och du kommer att vara enormt saknad av oss alla❤️
Som du kämpade och visade att viljan att leva var starkare än något annat. Men i onsdags bestämde du dig att sjukdomen skulle få gå segrande ur striden.
Men idag är det din dag mor och jag är både glad och stolt att just du var min mamma❤️
Sov i ro mor och jag vet att du har det bra nu. #fuckALS#alltidsaknad#tomhet
27 618 hours ago
Today, my mom lost her battle with ALS. She fought against this horrible disease for almost 5 years. While I do miss her, I can rest now knowing she is no longer suffering. I love you, Mom. #fuckals#fucklougehrigsdisease
70 21216 hours ago
You have always been my rock. You were the best mother anyone could ever ask for. I know you are in a better place now, but I will miss you so much! 😭😭😭💔💔💔 .
I am a fairly private person, so for those of you who did not know, my mom was diagnosed with ALS less than a year ago, which was detrimental to hear. After less than a year of fighting she lost her battle this past wednesday. It has been heartbreaking. .
I wouldn't wish ALS on anyone. I feel like many of us are not aware of how horrible ALS is and the fact that there no easy way for detection of ALS disease as well as absolutely no cure for the disease at this point. I know there will be a new challenge just like the #icebucketchallenge coming up here in the future. So please everyone be active and help out and challenge each other because the funding will really help others which are dealing with ALS and their families. Let's find a cure so other don't suffer like my mother did.
Ok this was a little heart wrenching when it came up in my Timehop ... but Look at the strength of this woman! If you scroll through you can see the priceless shock on @cerzosiejr.lenny ‘s face when mom decided to lie back and float around the pool .. ❤️ and of course Lu and Belinda there for some entertainment #FuckALS#missyou#love#pooltherapy#homecare#shesashark#babyshark (and yes Lenny goes swimming fully dressed 😅😂) 🙏😇
8 5718 hours ago
💕Hjemmestrikka Tovede barnevotter 💕 ❤20 kr pr solgte par gir eg til forskning på kur mot ALS!! ❤ ❤HJELP Å HJELPE!! ❤
Strikkes på bestilling. Kommenter hvor mange par og hvilke str du vil ha, så tar eg pinnene fatt og strikker til deg.
Supre som julegave/ bursdagsgave 😉
Har selv gitt slike i gave, når ungene skal i bursdagsselskap. ( spesielt når det gjelde jentene mine som går i 2. og 3.Klasse.) 😊
Str 1-2 år kr 175,- Str 3-5 år kr 200,-
Str 6-8 år kr 225,-
Str 8-10 år kr 250,-
Str 10-12 år kr 275,- Evnt porto og komme i tillegg😊
65 kr i frakt og emballasje for 1-2 par.
95 kr i frakt og emballasje for 3-4 par.
My mom is going through a rough time with ALS and it really sucks. It’s hard to see her like this because she’s had more energy than I’ve had my entire life. I’m not one who shares about this stuff on social media but seeing her like this really rough today. I love her and I really hate that she is suffering ❤️ #fuckALS
That is how it looks when about half of your body is paralyzed by ALS and you wanna change your position in a chair. Such projects get suddenly the size of a mammoth task. By watching that video by myself I was astonished how often I needed to place my left arm. And I was a bit frightened of the visible state of disability. I can imagine it may seem worse to others than it feels for the suffered one.
Every movement of the body is hard and often combined with pain. You start to plan exactly how to move. So everything needs full concentration and awareness. However, in all that shit, I am grateful I am able yet to walk a few steps with assistance. I am grateful to have my voice yet.
But this stupid disease makes me angry. At least it will go down together with me 🔫
Meine Frau ist an ALS, mit bulbären Verlauf erkrankt. Alles hat sich komplett verändert. Nichts ist mehr wie es einmal war. Die ersten Beschwerden, Riech- und Geschmacksstörung, machten sich im Januar 2018 bemerkbar. Eine verwaschene Sprache und Schluckstörungen folgten. Ein Untersuchsmaraton um die Ursache zu finden begann. Im Dezember 2018 dann die Diagnose ALS. Seit einiger Zeit sind die Sprachlaute nicht mehr verständlich. Ein Sprachcomputer oder die Handschrift hilft uns weiter. Das Schlucken ist unsere tägliche Herausforderung und so nimmt das Essen sehr viel Zeit in Anspruch. Mittlerweile kann der Kopf beim Laufen nicht mehr gehalten werden und fällt durch den fortschreitenden Muskelabbau nach unten. Die fehlende Ansteuerung der Muskulatur durch die geschädigten Motoneuronen macht sich am ganzen Körper bemerkbar. Viele tägliche Handgriffe sind schwer oder schon unmöglich geworden. Die ständige Gewichtsabnahme trotz Hochkalorien-Nahrung zwingt uns an eine Magensonde zu denken.
Meine ganze Kraft gehört jetzt meiner Frau und so werde ich in Kürze meine Arbeit aufgeben.
Die Fotografie möchte ich mir für die kleinen Zeitfenster erhalten. Sie soll mir ein Rettungsanker und Entspannung sein. Also sorry Ihr da draußen, wenn ich nur wenige Fotos zeigen.
My wife has fallen ill in ALS, nothing is more like it was once. The illness strike every day mercilessy. All my strength now belong to my wife. I Hope the photography can be rescue anchor for me.
Wrapping up the final details of our upcoming @pinkbike spring kit reviews. Lots of testing, a little bit of shooting, and too much writing... Colin being Colin rented a Sony A7III to test drive this past weekend - with the help of a monopod and patience on my part - we had a wee bit of fun doing some clean up shots and the @sonyalpha did not disappoint. #pinkbike#pivotmach6#smithoptics#fuckALS#sneakpeak //
Recently I have come to terms with the fact that I will never identify as a Catholic, a Christian, etc. ever again. I am a believer in God & Jesus & their fundamental teachings of being love & loving others without judgement. I am forever a work in progress, but I have more love in my heart & better standards for my life than I did in all my years of following organized religion. 🙏
Where did religion go wrong? We are human. We fall. We sin. We let society direct our steps. I used to worry that my Dad wouldn't be in Heaven when I got there because he wrote off religion long before he got sick. But as ALS Awareness Month comes to a close, I am sending out gratitude for realizing that the same path my Dad was on is the same one I find myself walking down, & if there is peace & knowing in my heart, imagine how my Dad felt when he knew he was finally going home.
There are 2 types of religious people; those who use religion for their own selfish gain & those who don't fit in because of it. All my life I identified with the latter. Religion has become more about the outward appearances of the people sitting in church rather than the inward state of our souls.
It's funny but these same religious people are the ones who have judged me when I dressed different, spent my money different, began certain relationships, cut ties in others, & found my voice in the exact opposite of what they wanted me to become.
I send these people love & gratitude & I pray for them daily. Before I found spirituality, I didn't really care about anyone. I pretended to but it was based on what they could do for me. I realize today that there is nothing a person can do for me that I can't do for myself & that is such a liberating feeling. It leaves me with the freedom to just love people as they are; messy, fragile, & often hiding who they truly are because religion has told them to conceal their greatness.
Spirituality isn't for the weak. It takes a strong person to sit with their demons & overcome years of social conditioning, thus reprogramming their mind. But it is always worth it to find peace & see the lessons in why things are the way they are. Keep your eyes open, my loves 💖
Last little note about this past weekend and then we’re moving on. I cannot express it enough how grateful I am to be a part of this team. Still feeling the love from this day. I wish I knew who the photographer(s) are/were so I can give credit for the great pictures. If anyone knows, tag that human with lots of thanks!! What a day!! Until next year...(and contrary to popular belief I am in the team photo).
So much love for these women and this team. Even though I lost my t-shirt and my sunglasses, all is well knowing that I finished with an official time of 53:31 averaging 10:43 a mile! Very proud of all who ran, especially our fearless coach, @coachdanbos, who won his age group, @rosamoriello, @amy__tea and all of the @heartbreakersrun friends who snagged awards in today’s race!! So very thankful to be a part of this group and call these people friends! Already looking forward to next year!!
Vi har venner og bekjente som har fått denne alvorlige diagnosen som ingen i verden har en god kur mot. Norge må øke midlene betraktelig for å forske på, og anerkjenne medisiner som fungerer. Pårørende må tas vare på. Kjøp armbånd på Facebookgruppen: Fuck als/Cure als #fuckals#endals#cureals#armbånd#defeatals
May is ALS awareness month. I've never been good at doing an awareness week or month, but I try to share bits and pieces of awareness through our day to day.
But this picture popped up from when Steve and I were dating. 2nd picture is today just a good comparison. 🤓🐻
This was one of our many trips we made to the hooch throughout the 4 months we dated. It's where he proposed, and where we spent many days walking, enjoying our time we had left of him on his own two feet. Which didn't last long.
What I wouldn't do for us to hop in the car and go for a walk at the river today like normal people. If you and your loved one has your/their health, soak up every minute of it. You never know when things could change.
You never know what could happen. ALS still has no cure, and there are many speculated causes, some of which WE ALL are exposed to on a regular.
Let's take better care of our planet, of each other, and of course never take our lives for granted. I think that's the best way to honor anyone living with ALS. . #hopeforsteve#fuckALS#allihavetosayaboutthat
Äntligen hemma igen, varit hemma nästan två veckor nu. Helt underbart att vara på hemmaplan, brutit några revben till men vad gör det, det är ju jul! Kommit igång med många av mina vanliga rutiner och speciellt maten gör det mycket lättare. Att byta ut massa sprutor i armarna, kala väggar och isolering mot en fantastisk julgran och julstämning är något som lyft mig till skyarna. Jag stannar här!
God jul på er och tack för all styrka ni gett mig och min familj. ❤🍌🎄✨ #Beatals#Fuckals#julstämning#värme#forartssake#kärlek#als#kissmyals#marrychristmas