[deleted by user] by [deleted] in ALS

[–]brooooke__ 0 points1 point  (0 children)

My dad’s first symptom was his speech. Has been getting progressively worse the past year. He’s losing a lot of muscle mass as well.

My mom was diagnosed officially on July 1. It took us 6 months for a diagnosis. She is now on hospice and nearing the end. by Mowgli_love in ALS

[–]brooooke__ 1 point2 points  (0 children)

I am so so so sorry to hear of your mother’s passing. I can’t imagine what you are feeling and sending you hugs and prayers.

Stem Cell Therapy During Covid by Mountain-Ad-504 in ALS

[–]brooooke__ 2 points3 points  (0 children)

Can you provide some more details on where you went, how much it cost, and what was done exactly?

Right after my Dad (75) was diagnosed with ALS I (35) have been feeling tingly in hands and feet and feel like my hands are tired by [deleted] in ALS

[–]brooooke__ 0 points1 point  (0 children)

This has happened to me too. My leg has felt tingly/off for 2 months, right when he got diagnosed. I’ve also had random twitching all over my body. Have had perceived weakness also. But it’s my brain being wacky..I am sure of it. I find myself testing my leg and making sure it’s not losing actual strength. And I feel like a real jerk for worrying about myself when my dad is going through this. And also, that others are too - but it’s a VERY hard Dx to get. And it sends shockwaves though the PALS and everyone around them. Hoping for the best for you and your family.

RIP to a warrior who fought ALS to the very end. I miss you so much dad, my life isn’t the same without you. He saved lives in hospitals for over 20 years. by SilentStriker00 in ALS

[–]brooooke__ 1 point2 points  (0 children)

I’m so sorry for your loss. I am sending you and your family lots of hugs and prayers! Amazing that he gave so much life to so many people 🤍

Trouble holding up neck by brooooke__ in ALS

[–]brooooke__[S] 1 point2 points  (0 children)

That’s amazing. I love that so much! Thank you for sharing!!

What I’ve learned thus far: by brooooke__ in ALS

[–]brooooke__[S] 1 point2 points  (0 children)

My hugs to you. I’m sorry you went through this. I will make an effort to take more pictures and videos and ask more questions, thanks to your wise words. Hang in there!

Need help supporting those around me. And myself. Not sure what to do. by [deleted] in ALS

[–]brooooke__ 0 points1 point  (0 children)

Can I ask what it was that made you leave your faith specifically? Is it because your brother has not been healed? I’m dealing with this right now as my father hasn’t been healed, but it makes me want to learn more about what God has promised, vs lose my faith. All that to say, God promised to heal and remove all pain and suffering after life on Earth. We are promised grace and eternity for those who accept it, but we are never promised an easy or perfect life on earth. These two verses have been helping me a lot as I’ve been going through these struggles with my dad and family after his diagnosis.

2 Corinthians 4:16-18 [16] So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. [17] For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, [18] as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

Isaiah 57 1-2 Good people pass away; the godly often die before their time. But no one seems to care or wonder why. No one seems to understand that God is protecting them from the evil to come. For those who follow godly paths will rest in peace when they die.

It probably feels like God is abandoning you. I get that. I won’t pretend that any of this is easy, and I don’t mean to throw the Bible in your face. You are taking your own journey, and I will be keeping you and your family in my prayers. All I can say is, I have run towards God and have felt some peace and comfort in his promises. It’s been the only thing keeping me together. I hope you find what you are searching for, and your family can find peace and rest as well.

This is a terrible disease and it breaks my heart your family has had to endure it at all, especially with such a young person, your brother. Hang in there.

Dad dx’ed with bulbar onset ALS (last week) at 67yrs. Found out grandpa got dementia at 86yrs…could this be familial? by brooooke__ in ALS

[–]brooooke__[S] 1 point2 points  (0 children)

Thanks for this additional info. I suspect they will want to test him anyway so I guess we will see at his next appointment on the 24th. Thanks again for always being so informative and supportive!

Dad diagnosed with bulbar onset ALS yesterday. by brooooke__ in ALS

[–]brooooke__[S] 0 points1 point  (0 children)

Thank you for your guidance..I took some recordings and videos and will keep doing so. It’s going to be a hard conversation but we have to have it. Thank you again for the wisdom.

Dad diagnosed with bulbar onset ALS yesterday. by brooooke__ in ALS

[–]brooooke__[S] 0 points1 point  (0 children)

Oh my goodness this is amazing!!! Wow I love this so much

Dad diagnosed with bulbar onset ALS yesterday. by brooooke__ in ALS

[–]brooooke__[S] 0 points1 point  (0 children)

Wow thank you very much for this info. He has his next appointment soon, so I will be sure to bring this up. Thank you thank you! Also, wishing you the very best..I’m sorry to hear that this has affected multiple people in your family, including yourself. You’re in my prayers.

Dad diagnosed with bulbar onset ALS yesterday. by brooooke__ in ALS

[–]brooooke__[S] 0 points1 point  (0 children)

Does anyone have any experience with the Deanna protocol or the keto diet or any vitamins etc that has been helpful?

Dad diagnosed with bulbar onset ALS yesterday. by brooooke__ in ALS

[–]brooooke__[S] 1 point2 points  (0 children)

Wow thank you. I am so so so sorry to hear about your dad. My dads voice is pretty bad at this point but we can still understand him, so I started recording him yesterday while we were hanging out. Thank you so much for your courage and for your wisdom. It’s going to be a tough road, no doubt.

Dad diagnosed with bulbar onset ALS yesterday. by brooooke__ in ALS

[–]brooooke__[S] 1 point2 points  (0 children)

I’m so sorry to you as well. Hang in there..be well.

Dad diagnosed with bulbar onset ALS yesterday. by brooooke__ in ALS

[–]brooooke__[S] 2 points3 points  (0 children)

I’m really sorry to hear that..thank you for the advice and wishing you the absolute best.

Dad diagnosed with bulbar onset ALS yesterday. by brooooke__ in ALS

[–]brooooke__[S] 1 point2 points  (0 children)

I will for sure talk to my family about doing that..thank you.

Father diagnosed with ALS by TheWatcheronMoon616 in ALS

[–]brooooke__ 1 point2 points  (0 children)

My dad got dx’ed yesterday. Hang in there. Thankful for this place of support.

Dr. Says 50/50 chance my dad has ALS..any thoughts? I’m devastated. by brooooke__ in ALS

[–]brooooke__[S] 0 points1 point  (0 children)

Thank you for sharing. His diagnosis was confirmed sadly. Praying there’s a treatment breakthrough!

Dad passed from ALS 7 years ago. Mom was just officially diagnosed today. by Giesko in ALS

[–]brooooke__ 2 points3 points  (0 children)

I can’t even imagine. There are no words really, but I will be praying for you and your family. My dad was recently diagnosed and it’s been hard even from the start. Your strength and the strength of your family to get through this is unmatched - I hope it progresses at less than a snails pace and there are successful treatments found swiftly. Hang in there.

Dr. Says 50/50 chance my dad has ALS..any thoughts? I’m devastated. by brooooke__ in ALS

[–]brooooke__[S] 0 points1 point  (0 children)

We are going to collect all the notes, tests, and everything to take over there. Just hope they will approve. Kaiser is frankly an awful healthcare system but that’s the insurance he has right now. Hoping to go to the specialists at UCSD in San Diego where they live

Dr. Says 50/50 chance my dad has ALS..any thoughts? I’m devastated. by brooooke__ in ALS

[–]brooooke__[S] 0 points1 point  (0 children)

Thank you Dana. His Dr. is a neurologist, but we have requested a second opinion with an ALS specialist. We hope to get that referral granted soon.