Відео

Oh my ALS sister, the pain is awful and we get medically gas lit and the concern for our breathing with opioids is ridiculous. The pain besides our dying motor neurons and muscles is bad on our minds. Severe pain crisis cycles this is awful. My ALS doc mentioned the baclofen pump is it any better? I’ve found the benzos help at the beginning of a severe spasticity attack but not during. I went to a palliative doctor that was more set on cancer patients. Seeing pain management now they explained that when the spasticity is relieved the brain and nerves scan and pick up the other pain areas. I’ve almost past out in pain. We need better pain control allowing people to suffer like this is cruel. My heart goes out to you ❤

@@tallskinnywith6shots1the pump is a progressive process. They fill it with the drug, & adjust every 2 weeks until you’ve hit your sweet spot. All the while bringing down slowly your benzos so you don’t go through withdrawal. Since I was so high on so many benzos I haven’t noticed anything from the pump. Most people it take 3-6 months to find the right dose. Keep in my surgery on the spine & ALS can do weird things. I’ve completely lost most my bladder continence since the surgery. Also my breathing has dropped & again the pain is everywhere. My doctor said ALS patients bodies are constantly compensating for changes. & when something rattles that (surgery) it can take forever to recover. & it’s a progressive disease so we don’t have forever. I had to get the pump with the orals not working my spasticity was getting into my diaphragm & I was chocking & passing out. Midazolam is the only thing that unlocks me enough. But you can’t be on that to long. So hopeful for something happening with the pump.

Holding on, I hope you’re good too!

Its so hard to cope mentally my als is Quick progessing but i love ur attitude you inspire me

@@Tayyab-hr1gp yes I realized that after sorry

@@tallskinnywith6shots1 it's ok nevermind

Thank you 🙏❤️

I appreciate your comment. I’m sharing it because I know that I’m not the only one going through this. I know that healthcare and hospital system. The US is kind of broken. I am navigating this and sharing it in hopes of helping someone else I will eventually find the right fit, and hopefully my journey can help somebody else.

I may share some physical things, but my channel is more about the mental and emotional and my life. it is my ALS journey and I do not want to be a monkey that people look at for what does ALS do to you? The focus is a different aspect of the journey. Should I feel like I want to share that I will but it is not a look what ALS has done to me physicality thing for me . I have a boundary with that.

I appreciate you and I’m actually doing that every day I really hope the garlic turmeric, black pepper and ginger helps :)

@@ThePerfectSeason1972 thanks :)

@@lindylouwilliams8331 Today is better thank you dear

@@tallskinnywith6shots1 I have Dystonia & I have good & bad days when I'm shaky & tired. I know what you have is worse than me & I wish that could find a cure for all these illnesses. Take care. Lots of love. Linda xx

@@lindylouwilliams8331 much love to Linda. Dystonia is awful. I had other shots today and I’m finally having some relief if a little bit of nausea. I’m hoping to Botox hits in tomorrow. Step-by-step, finding relief and let’s hope that cures are found 🙏💕

@@adv.satadrusovonghosh.bhar8090 I will do an update tomorrow and discuss them thank you for your prayers

@@qedqed110 My July video was a live video. This has been a rougher month with fatigue, but I will put a video up this weekend my dear

@@qedqed110 ?

@@abrahamcastillo4153 Hola, lamento que estés lidiando con una gran ansiedad. Por favor, no escuches al Dr. Google. Muchas cosas que no son ELA pueden causar aceleraciones y son mucho más probables. No tenía ansiedad cuando empezó la mía y era mucho mayor. Hable con su médico y cuídese. La ansiedad por su salud puede ser debilitante. La vida puede ser más grande que eso, no te quedes atrapado y te lo pierdas. Con amabilidad te digo que probablemente sean fasciculaciones benignas y sólo un médico te lo puede decir con seguridad, nadie en Internet

@@tallskinnywith6shots1 si, es que mis primeros sintomas fueron como si la rodilla estuviera sin sensibilidad y mis piernas entumecidas. Y me di cuenta que en la ELA esa enfermedad dentro de sus sintomas no existe el entumecimiento ni quita la sensibilidad, por esa parte me siento tranquilo, solo fue buscar en google y cuando abrí la boca las ví, luego me dió otro ataque de ansiedad fuerte. Sinceramente me voy por la ansiedad aunque de todas maneras saqué cita con el neurologo. Espero que seas fuerte, muchas bendiciones y sigue adelante. Un abrazo

Inteligente acudir al neurólogo y eso fue un gran paso orgulloso de ti. Sé que obtendrás tus respuestas y espero que esa ansiedad también sea tratada porque es un oso y extremadamente difícil de manejar. Te deseo salud y que estés a gusto, un abrazo.

Yup

Hello life has been really busy and I’ve had some miserable physical events. My first video ever talks about how I got diagnosed I am a genetic ALS patient I have had three family members diagnosed with ALS and my father had a related disease to our genetic form FTD with MND symptoms so when I started dropping things didn’t worry about when my legs were stiff. That was my ankle still stiff didn’t think about it but when my gate changed, I knew what it was because of my family history.. unfortunately my primary doctor noted motor neuron deficits and sent me to motor neuron neurologist, and I was diagnosed with ALS. I was confirmed the genetic type. I am a slow progressor. From being in a clinical trial, I am Lyme negative as well as other infections that can affect the neurological system My daughter likes this area. I have friends I used to have more family that lived here but most of passed so we own a house here. I don’t see us moving anytime. My little one wants to live here so that’s where we are. I hope you are doing well .

I was exhausted ALS fatigue

@@tallskinnywith6shots1 take care

I’m back in Houston now and waiting to see another specialized neurologist for hemifacial cramps

Que tenías???

@@ThePerfectSeason1972 Thank you I hope that your family member can be used to be empowered with the knowledge and also have a miracle

@@ThePerfectSeason1972 I have a video I put up last week. I’m still alive. I’m still breathing. I have a unsteady gate, but I’m still able to walk. I am generally weaker all over than I was. I deal with fatigue currently, I am waiting for my pulmonologist to contact me. I may need to switch from CPAP to BiPAP when I sleep, but amazingly preserved.

@@tallskinnywith6shots1 take any medicine for fatigue dear friend

@@tallskinnywith6shots1 are you using TikTok

@@Tayyab-hr1gp No medicine for fatigue just have to cope my friend

@@teresa2638 hi Teresa, I look good sitting in the chair :) I can still walk and talk. It’s just something internal. I don’t know what it is.

@@tallskinnywith6shots1 I'm sorry. Can't be very pleasant for you. I hope you keep enjoying life for now. It's a cruel disease. Hoping you have a good weekend. xx

@@teresa2638 thank you love it is a cruel disease

No, I do have familial ALS I have a slow progression which is different. It’s been confirmed by three different medical groups highly esteemed ones.. if you look at community page, you can see the confirmed diagnosis. No two people with ALS will present exactly the same. We all die the same though.

@@tallskinnywith6shots1 yes I know as you told in your videos you have ALS. but you are looking as you are not patient of ALS.

@@Tayyab-hr1gp I have it and I have doctors diagnosed me. Sorry I don’t look the way you want me to. I am a real person sharing my story with ALS.

@@Tayyab-hr1gp What do assume an ALS patient to look like? Because different people present in different ways depending on the stage of the disease and the type of disease. There is more than one ' type' of ALS. They're all horrible though and one of the cruellest afflictions. Most do not go from healthy to bedridden and paralysed overnight. This lady has already explained that she's a slow progresser and frankly, we should be happy about that for her sake. Quite honestly, I think you need to stop asking insensitive questions.

@@tallskinnywith6shots1 I'm so sorry people question you like this. You don't deserve it. Yes, some awful people fake illness but you're not one of them. xxx

Thank you Emma❤

I’m sorry you have myclonic dystonia a trial in its self. Love to you. Kate❤

@@tallskinnywith6shots1 ❤

@@karinavelasco2103 Amen hugs right back!

@@jklscrochetthisthat905 thank you 🙏💕

🙏 Thank you

@@NicoleStarr8287 it was just a little short. I tried something different. I have ALS and it does affect my voice. I’ll get some microphone. I hope you have a blessed day.