My ALS Journey August 2024

[@shugm65]

Hi there just found your channel all the best x

[@jklscrochetthisthat905]

It's nice to see you again. I'm sorry to hear that you're having trouble getting pain medications. May God bless you and keep you 🙏 ❤️ Jan

[@ThePerfectSeason1972]

Hello Welcome Back !

[@tallskinnywith6shots1]

@@ThePerfectSeason1972 thanks :)

[@leewate239]

❤❤❤❤❤❤

[@JajwHajw]

Hope ur good im 31 years with als

[@tallskinnywith6shots1]

Holding on, I hope you’re good too!

[@JajwHajw]

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

[@lindylouwilliams8331]

Hi, I hope you are feeling well at the moment xx ❤

[@tallskinnywith6shots1]

@@lindylouwilliams8331 Today is better thank you dear

[@lindylouwilliams8331]

@@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

[@tallskinnywith6shots1]

@@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 🙏💕

[@Tayyab-hr1gp]

Make a video in which you are walking.

[@tallskinnywith6shots1]

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.

[@nicolefobes7083]

40 with ALS 3 years in here. I have severe spasticity & clonus. I’m on diazepam (Valium), tizanidine, dantrolene, clonazepam, midazolam. I’ve topped out on all those I had started out in my benzo journey last thanksgiving. Now I’m stuck they don’t work anymore now they had me put a baclofen pump in in July. Haven't notice anything they started taking down my benzos. my pain aches and my neuromuscular system joints tendons have been through the roof. They can only go up 15 to 20% I have a baclofen pump adjustment. I’ve done the math on where I was with my oral medication and adjusting my baclofen pump. It’s going to be over a year before I find any relief from the damn thing. I don’t even know if I’ll make it till then. The pain in ALS is so under talked about that. It’s almost ridiculous. I told one doctor have you had your muscles start to die because your motor neurons are dying and they said no and I said well then you have no idea how it feels and it hurts. I’m just stuck in a hole right now oral not working. baclofen is working its way up. I just don’t know what’s gonna happen in the coming months. I feel like I’m just shutting down. I love your videos and I wish you luck, my ALS sister!

[@tallskinnywith6shots1]

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 ❤

[@nicolefobes7083]

@@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.

[@jillybean3688]

You 2 women are so brave and admirable! ❤️❤️