ALS type 4

Hi again @rivermaya34 -- While we wait for members seeking information on ALS type 4, I thought I would share one more resource that has helped me in my searches for learning what helps and what research is being done for some of my conditions. Have you used Google Scholar before (https://scholar.google.com/)? It lets you sort the search results by year which can be helpful when looking for the latest research. Here's a link to the search results for the phrase "ALS type 4".
https://scholar.google.com/scholar

Just checking in - I'm really dealing with some deficits and seeking answers. I do my own research on a daily basis, track my condition, talk to my doctors, belong to several ALS communities, stay updated re: my genetic info, etc.....but have yet to see any headway made with this specific subtype. Sometimes, it's hard to navigate the many crossovers this has with my other health challenges. Anyone new (or old) here have any suggestions, encouragement, support, resources etc for a young 35-yr old dealing with this "alone?" (i.e. minimal support bc family is in the dark + few friends know) Just curious...if not, all good in the hood. 🙂 Thanks y'all.

@johnbishop Sorry for the delay in acknowledging this - I saw it when you originally posted and I'm really grateful! Yes, I have used Google Scholar some, but haven't had good results with this specific search. I've dug pretty deep and have some resources earmarked, but it's SO hard to find anything much regarding this type! :/ They say "just be patient," but it's been 4 years now and I'm trying to stay ahead of it. Thankfully, I learned about this in 10th grade and it always stuck with me. Plus, my Dad's best friend died of this, so I've seen it firsthand. Unfortunately (yet fortunately), it was a short battle and I was never put into a caregiver position. It's weird to me that no one in my family has had this (maybe someone did long ago, or I'm the first where it's become 'active'), but I've come to terms with it. It doesn't anger me, but there are certainly days where I wish it would progress faster rather than this slow, agonizing battle. But, I'm thankful for the time that I have to enjoy life and serve others in the meantime. Everyday is a blessed gift. 🙂

@rivermaya34 Thanks for tagging me @rivermaya34. I can't tell you how much I admire your positive attitude and your enthusiasm to reach out and help others especially here on Connect. I know you do a lot of searching trying to find more information on ALS-4. Wondering if you have run across this site?

-- What’s the Latest on ALS Research and Clinical Trials?
https://www.massgeneralbrigham.org/en/about/newsroom/articles/whats-the-latest-on-als-research-and-clinical-trials
At the end of the article is lists 3 different links including one with ALS webinars that I thought might be good to add to your resources if you haven't already seen it.

Hoping you have a blessed day sending more positive vibes in case you need some extra!

@johnbishop John, you are so kind!! And, for the record - you were the FIRST person who originally reached out to me with a lot of encouragement and welcoming into such a bright and beautiful family! So, I should be thanking you! 🙃

Thank you for sharing that site - no, I hadn't actually come across that one yet! So, I'll definitely be pocketing that one away for later. I did, however, recently come across a post on YouTube that an Israeli research group finally made headway where they were able to delay and/or actually reverse the effects of ALS, and I have that saved on my phone somewhere. I need to find it and share the link here for anyone who might be interested; thanks for that reminder to do so. I'm very interested in the webinars you mentioned! Seems most people are interested in the main form of this disease and not the phenosubtype. There's only ever been a "few" number of cases reported, and I was only able to find record of one individual (from Germany, I believe) with the exact mutation that I have. I guess it's really that rare, and truly not enough info established yet. But, like Lorenzo's family (who started the foundation) - they never stopped researching and trialing things, and advocating for their child. Their involvement and passionate pursuit is what really made an impact for so many people in the long run! I have high respect for them, and pray that part of my legacy can be offering hope (real, that is) to people who are in need of it, no matter what the circumstance or condition(s). I have a huge heart for those suffering and enduring persecution in third world countries, in particular. ❤ Both a blessing and a curse, because with joy it also brings pain. Glad I'm not the one in control of all things! 😉

And, yes - thank you for the good vibes!! I definitely needed them after yesterday, hearing that friend #6 died, plus now a new health challenge. 😔Even still, I have no room to complain. About anything, ever. 🌺 Hope you're doing OK! Sending neon vibes back to ya!

OOOOhhh, I love neon vibes! @rivermaya34. I hope you have a Happy Thanksgiving! Wished I could have taken a picture that I know you would love to see - a flock of about 30 to 40 wild turkeys grazing on an open frost covered field down the road from where I live. My first thought was - don't they know it's Thanksgiving next week 🤣

@johnbishop I felt myself shaking with joyful adrenaline as I read this haha!! Ughhhh it makes me stupid lol! I LOVE turkey and deer hunting! 😍 Thank you - I don't really enjoy holidays, but I'm choosing to focus on my 9mo nephew and just be thankful for the big precious wonderful dose of dopamine that he is. And, I thank God for those moments. Happy Thanksgiving to you, too!!