- Видео 147
- Просмотров 112 042
tallskinnywith6shots
США
Добавлен 25 май 2014
I like strong coffee while enjoying the adventures each day brings....Practical free spirit full of inane facts and funny stories
Health and Life related stories to come
My Videos are for entertainment purposes only, vlogging my journey with ALS and life
They are for NOT for replacement of personal Health Care Advice Or Care. Please see your MD, Health Team, and or ALS Team with questions for your own healthcare concerns.
Health and Life related stories to come
My Videos are for entertainment purposes only, vlogging my journey with ALS and life
They are for NOT for replacement of personal Health Care Advice Or Care. Please see your MD, Health Team, and or ALS Team with questions for your own healthcare concerns.
October pALS life update and thoughts
Hey everyone ! I finally feel well enough to put up a video albeit a bit tired and hope this finds you doing well. An update on my ALS and life. Hope you all get some chocolate and some creepy fun.
Oh my brain the book I was talking and was The Soul’s Red Thread: Navigating Life’s Great Passages by Scott Eberle, M.D about the CCALS series here’s a link ruclips.net/video/bRLSqplVrYA/видео.htmlfeature=shared
It’s great
Oh my brain the book I was talking and was The Soul’s Red Thread: Navigating Life’s Great Passages by Scott Eberle, M.D about the CCALS series here’s a link ruclips.net/video/bRLSqplVrYA/видео.htmlfeature=shared
It’s great
Просмотров: 512
Видео
My ALS Journey #pALS Life Update coping with change
Просмотров 6262 месяца назад
Hello! I hope you all are well. This vlog is me talking about life and quality of life changes figuring out the now and what I can do. Life is always changing
ALS/MND Spastic hand
Просмотров 6902 месяца назад
My right hand is spastic right now and I’ve been having problems on my right side with spastic facial muscles down my right arm and now my hand is in a big cramp. It has been very painful despite the anti-spasmodic medicines. At least the Botox in my face prevented full hemifacial cramps the right side hurts for me brushes the trigeminal nerves, just tight masseter ouch. Lower motor neuron symp...
My ALS Journey Still trying to find comfort
Просмотров 4792 месяца назад
Hello Everyone watching. I’m finally at the moment out of the hell of pain crisis/ medication reactions. Changing waters in my journey with ALS I’m getting weaker physically but otherwise okay. Trying not to let this take my peace
My ALS Journey Finding comfort and relief
Просмотров 2193 месяца назад
A follow up after Friday’s’s trigger pain shots. Those muscles are relaxed, but other muscles are straining and post procedural pain crisis from my fatigued muscles screaming. Good News The Botox Works!!! I feel my face having fasciculations but no hemifacial cramps! That is something to be happy about day five it works!
My ALS Journey trying to find Pain Relief
Просмотров 1653 месяца назад
I have found a little relief. This week I’ve had Botox in my face the neurologist and my pain specialist did a combo shot in muscles in my neck and upper back. Cramping in those areas are better now it’s my intercostal muscles now over simple ugh. Joy step-by-step, finding relief. Important to also live in the moment there’s good around.
Part 2 My ALS Journey August 2024 abbreviated last part
Просмотров 1213 месяца назад
Oops, the microphone went out. Darn my ADHD.
July 2024 Wedding Vow renewal and 🌀 My ALS Journey Thank you Wish Upon A Wedding
Просмотров 3614 месяца назад
July 2024 Wedding Vow renewal and 🌀 My ALS Journey Thank you Wish Upon A Wedding
10 yr Vow Renewal and Hurricane Beryl
Просмотров 1615 месяцев назад
10 yr Vow Renewal and Hurricane Beryl
My ALS Journey #pals Life update overdoing it and enjoying June
Просмотров 4745 месяцев назад
My ALS Journey #pals Life update overdoing it and enjoying June
Wrist fasciculations, ALS spastic hand #spasticity #pals
Просмотров 1,9 тыс.6 месяцев назад
Wrist fasciculations, ALS spastic hand #spasticity #pals
Postcard from the edge of a Spasticity attack
Просмотров 4276 месяцев назад
Postcard from the edge of a Spasticity attack
#pals Book Review Steve Gleason’s new book
Просмотров 1857 месяцев назад
#pals Book Review Steve Gleason’s new book
#MyALSStory Support the ALS Association
Просмотров 957 месяцев назад
#MyALSStory Support the ALS Association
My ALS Journey #PALS Update April showers
Просмотров 1,1 тыс.7 месяцев назад
My ALS Journey #PALS Update April showers
April 2024 My ALS Journey and Life Update
Просмотров 1,9 тыс.8 месяцев назад
April 2024 My ALS Journey and Life Update
A call to action for ALS and Lou Gehrig’s disease here in the United States
Просмотров 768 месяцев назад
A call to action for ALS and Lou Gehrig’s disease here in the United States
My ALS Journey PALS Life update March days 2024
Просмотров 1,2 тыс.9 месяцев назад
My ALS Journey PALS Life update March days 2024
My ALS Journey # PALS Life Update February 2024
Просмотров 9299 месяцев назад
My ALS Journey # PALS Life Update February 2024
My ALS Journey December PALS life update
Просмотров 680Год назад
My ALS Journey December PALS life update
My ALS Journey Dia De Los Muetos 2023 just remembrance of sweet things
Просмотров 490Год назад
My ALS Journey Dia De Los Muetos 2023 just remembrance of sweet things
Meditation Body Scan and Generosity 16e
Просмотров 98Год назад
Meditation Body Scan and Generosity 16e
My ALS Journey #PALS Life Update Sept 2023
Просмотров 736Год назад
My ALS Journey #PALS Life Update Sept 2023
I watched your first video, which you posted on RUclips 5 years ago. You said that you were diagnosed with amyotrophic lateral sclerosis in your last video, which you posted on RUclips 1 month ago. There has been no change in you for 5 years, don't deceive people, you are not a patient with amyotrophic lateral sclerosis, you opened this channel to earn money and ratings..
@@Ruslanmagomedov-c9u not true I have significantly weaken, athropied etc and I have tested positive by three different of expert Neurology groups. I have C9orf72 ALS. I am not monetized nor does your views match the clinical diagnosis I have no experience life. You have a better day.
@@tallskinnywith6shots1c9orf72 gene is frontotemporal dementia progressive type in amyotrophic lateral sclerosis i have this type i think you are a liar you have no change in 5 years 0% yes i have had this disease for 11 months now i can't walk anymore no amyotrophic lateral sclerosis patient 5 years you are can't stay in the situation, don't deceive people with lies..
@@tallskinnywith6shots1and you don't have muscle atrophy I haven't seen any fasciculations in your videos I've watched all your videos.
Am i missing Nov and Dec?
@@qedqed110 I just celebrated Thanksgiving with the family and caught Covid so when I’m a bit better, I’ll put a video up
Hello, I hope you are well. I have been having twitches for a year (arm, shoulder, back, leg, calf and hip). It is everywhere. If it had been twitching, would it have been obvious in such a long time? Doctors did a physical examination and said it was anxiety. EMG I DID NOT HESITATE.
@@haticecicek8409 I hope the EMG was clear. Benign fasciculations are actually more common than ALS. I hope you find some relief and are negative for ALS. Please take care of yourself.
@@tallskinnywith6shots1 emg i didn't hesitate
What trial have you gotten into ? I know for a fact that there is a cure for this disease they are holding back.
@@lukebassignani8169 COYA 302 phase 1 a,b and c
Are you still alive and kicking it seems women have a longer life with als. I know for a fact there is a cure. They split atoms 100years ago they no doubt can stop the death of human cells. Hopefully with the change in the government within the next two years or so these cures will be released. If they can fast track a Covid “vaccine” for free they can save terminally I’ll citizens.
I joined the 50 club two weeks ago. Happy to get here after a cancer battle mid-30s! Happy Birthday and I hope your health batlles progress very slowly.
Happy Belated Birthday!!! Stay strong!! 🥳🥳🥳🎉
Thank you all!!!!❤❤❤
Happy Birthday
Happy birthday, enjoy your day 🥰🍰
Happy Birthday 🎉🎉
Happy birthday 🎉
Happy Birthday lovely ❤
Happy birthday!!!🎁 🎂
Happy birthday 🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂
Happy birthday dear!!
Happy birthday ❤
Happy birthday 🎉
Happy birthday 🎉🎉🎉🎉🎉🎉🎉
Happy birthday, looking great.
Happy Birthday ❤
Happy 50th Birthday! 🎉🎂 You look more like 30! Have a wonderful day 😘
Happy Birthday!
Looking good, sister. Where is your Boo-tiful Halloween theme? Your wise thoughts to me mean so much to me. I'm here for you. (I am 20 yrs older than you. But, due to my severe ADHD, i am immature. a psych told me that we also look younger with ADHD. Oh look--a squirrel! Off to a new distraction Frontporchtalker
@@qedqed110 I did a graveyard thing this year with lights and sounds full-size candy bars. It went well. ADHD is neurodivergent gift I believe.
Howdy, my dear, funny sister from the RED, RED, state of Texas. Here's how I think of my own pain: One great thing I do is tune-in to here your pearls of wisdom. Had a hard time finding you. Where's your Halloween theme? Things are scary enough already, Tomorrow is the big day for the election?
@@qedqed110 I live in blue Houston most of the big cities are blue and the election hit me hard. Hope you’re doing well.
I have tried to meditate many times, but my mind keeps wandering. I think you look great! ✌🙋❤🌹
I am so glad u have a really slow moving a.l.s.. I don't notice really anything. Soooo glad for u. Prayers always to you😅
@@cindykindel4717 thank you Cindy prayers work
Are you ever feel that your tongue is in fasciculations.
@@Tayyab-hr1gp when it first started yes. Now I don’t notice it my tongue is thinner now though. I guess you get accustomed to it
Take care and hope you enjoy Halloween. xx
Happy Halloween Teresa hope you are well 💕
You look amazing. Never give up, I hope they find a cure for all these horrible diseases. Love & hugs to you. Xx ❤
Hugs to you from Texas Lindy Lou
Hi there just found your channel all the best x
My is the same i have ALS to
Sending you love ❤️🩹
I like cheese
I wish you the best
I'm sorry you have to put up with this cr@p.
Use chapstick
Wear contacts
@@614_hill I have dry eyes and discoordinated hands it wouldn’t work
Why should she? She stunning as she is.
That didnt happen
@@614_hill I’ve had several people comment things I don’t get it, but the Chapstick is a good idea. Thank you.
No
🤷🏻♂️
My heart goes out to you. Thanks for another video. You're righ,t acceptance and finding peace and gratitude are key, not always easy but definitely key. For me with my condition (not als) it's also a case of thinking what can I do, as well as what do I need to do to bring me moments of peace, joy and contentment. I'm writing a 'personal winter survival guide' whilst watching this and the first thing is 'conscious living'. The second thing is drink more tea!!😅Take care and thank you. xxx
Hi Teresa, enjoy a warm cup of tea it’s the little things that soothe. Life brings many things thanks for the sweet comment hugs :)
Your weight appears healthy to me.
@@trudyboschert4472 yes I just lost a lot of weight rapidly- fluffy before
Voice is very very slow
My mouth is effected cramps in the jaw couldn’t open it normally
@@tallskinnywith6shots1 ok sorry 😭 😭😭 dear friend
@@Tayyab-hr1gp thank you
@@tallskinnywith6shots1 welcome
Hello and good to see and hear from you again.
@@ThePerfectSeason1972 thank you for watching :)
I love your Fall theme! Your fave holiday just around the corner. Halloween! Here's a challenge: try fixing the toilet based on a youtube video~.I can't replace the engine in my Jeep (turns out it needs oil!). I hear you about your spastic issues. Sometimes I am prone to that little, teeny, weeny voice that tells me I'll never publish! But then I tuned into you, my friend. Resetting life is a strange concept. But it's living consciously. My dear Texas Lone Star, hugs. Frontporchtalker.
@@qedqed110 Darn your inner critic if you publish, I think you would find an audience. It’s hard on the online platforms sharing your stories. It just takes that little click to get wider audiences. Time It’s a commodity to hit it at the right time. It is amazing what you can find and fix by RUclips videos one thing that is a wonderful side effect of the pandemic if ask me. Yep, resetting life what are my goals for quality of life? Consciously living and sobering for realistic goals coming from a body that is having deterioration of motor neurons. Frontporchtalker. I could see your writing going viral on NPR. Overtime collect a manuscript , I enjoy your stories. I’m not gaslighting either. What would be the point of that? Hugs my PNW sister
Hugs to you my PNW sister. Halloween is coming such fun. I’m blowing up the fake body today to wrap it up in a garbage bag and use the duct tape such fun. I’m twisted I know. I am so glad your jeep just needed oil. Forewarned does jeeps and oil in jeep is really important. My niece blew her engine in her jeep 10k I would keep an extra oil container in the jeep. Darn your inner critic you’re writing is really good Frontporchtalker it’s worth publishing I can see it being sold in Powells and other bookstores perhaps an NPR recommendation. It’s just timing time is commodity. May you be blessed with a lot. I am just restructuring to be realistic and to be able to enjoy my life yes living consciously resetting my goals for quality of life. Should be interesting and helpful
From how long you are not able to move your hand and its parts easily right 👍 hand
It last as long as the spastcicty does it can be for several hours or several days. Dr. Appel told me to shake my hands to help release and I do thumb finger exercises as I can. My hands are weaker, but not that spastic
@@tallskinnywith6shots1 no I means how long before rigidity in your movement right hand
What med do you take for it ?
@@mohammedelamineayad5237 baclofen
You are so loved, my lone star sister! Just like the woman I met over the border (see below), we've never met in person either. I use my intuition and my keen senses for everything. You know sooo much about the physical understanding of medical stuff. I use my special power, ADHD, to get around. The other day I was looking thru a car lot (i blew the engine in my JEEP, and a rude woman treated me like I was casing the place... oK, YOU are now au courant!
How rude what a way to treat a potential customer. People these days the election doesn’t help the way people are treating each other. Jeep engine that’s an expensive one. My niece just spent well is paying off $10,000 to have her engine replaced in her jeep eek. May it all work out. Much love to you