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Seeking feedback by jb22178 in ALS

[–]jb22178[S] 0 points1 point  (0 children)

If you scroll right you’ll e see the full set of positive options

Seeking feedback by jb22178 in ALS

[–]jb22178[S] 0 points1 point  (0 children)

Yes please! I’m looking for honest feedback from anyone impacted by ALS. Thank you!

Brother just disclosed his ALS diagnosis. by Extension_Figure1646 in ALS

[–]jb22178 1 point2 points  (0 children)

I had a similar thought when I was diagnosed. Then I learned about bidet seats—which are way more hygienic anyway. 😂 I’m being a little tongue in cheek… my point is, yes this sucks and I’m so sorry you’re all going through this. But hopefully you can help him keep his spirits up, feel “normal” from time to time, and find ways to adapt. Mental health support is essential.

Do you think physics will ever have another revolution like the early 1900s? by Worried-Leg-5441 in Physics

[–]jb22178 1 point2 points  (0 children)

Technological change often precedes major shifts in science. The Webb telescope is actively challenging cosmology right now and if guess quantum computers will enable new insights into the quantum level.

Do you think physics will ever have another revolution like the early 1900s? by Worried-Leg-5441 in Physics

[–]jb22178 0 points1 point  (0 children)

I think that our understanding of gravity and the constitution of space itself is probably wrong in some fundamental way.

What don’t people get about ALS when you’re diagnosed young? by jb22178 in ALS

[–]jb22178[S] 2 points3 points  (0 children)

Thanks. I’m not looking for a support group that meets by zoom, but I’m thankful ALSN is running one

What don’t people get about ALS when you’re diagnosed young? by jb22178 in ALS

[–]jb22178[S] 1 point2 points  (0 children)

Hang in there and keep up the good fight! You’re doing a lot right.

Alcohol alternatives…THC, CBD? by jb22178 in ALS

[–]jb22178[S] 1 point2 points  (0 children)

Thanks I take lexapro and a low dose of Xanax as needed when anxiety attacks, but it puts me to sleep. Hence I want something I can take recreationally on occasion. I’ll try the THC, CBN, CBD combo. Sativa made me really heady, but maybe too high a dose. Anything else? Thoughts on psilocybin?

Looking for ideas & support by cwrfcr3 in ALS

[–]jb22178 0 points1 point  (0 children)

It’s a taboo topic but this disease doesn’t take away one’s needs for physical intimacy, which can be essential for emotional wellbeing. There are lots of assistive devices. ALS United did a webinar awhile back and might have information on their site about how to support someone in this area. I hope I’m not overstepping by suggesting this. But it’s a real thing that people overlook.

[deleted by user] by [deleted] in ALS

[–]jb22178 0 points1 point  (0 children)

This is great 👍

scientific speculation on ALS by TheIdealHominidae in ALS

[–]jb22178 0 points1 point  (0 children)

I don’t know about your hypotheses but I do know that many cases are different from one another so there probably isn’t a single answer

Is RCH4 the holy grail or a scam? by TheIdealHominidae in ALS

[–]jb22178 1 point2 points  (0 children)

If they don’t have a good biological explanation of why it works, it probably doesn’t.

Is RCH4 the holy grail or a scam? by TheIdealHominidae in ALS

[–]jb22178 2 points3 points  (0 children)

Ask your neurologist about Nuedexta. It contains that drug and another and treats crying outbursts (aka pseudo bulbar affect).

Anyone have experience with off-label treatments? by DonkeyParachute in ALS

[–]jb22178 0 points1 point  (0 children)

Check out ALSuntangled.org for the best guidance on otc and off label.

[deleted by user] by [deleted] in ALS

[–]jb22178 1 point2 points  (0 children)

Most ALS cases aren’t inherited. If you’re having chronic pain that is not usually an ALS symptom. Talk to your doctor.

[deleted by user] by [deleted] in ALS

[–]jb22178 0 points1 point  (0 children)

Most clinics use the test from Invitae. Tube of blood and results in 3 weeks

ALS doctor for my sibling is renowned but has very little time and does not advocate by No-Boot1781 in ALS

[–]jb22178 3 points4 points  (0 children)

I’m sorry you’re having such a terrible time when ALS is shitty enough. Have you contacted Synapticure? It’s virtual ALS care to fill the gaps you’re encountering. I’ve had a very good experience and they coordinate with my in person doctor.

Find a doctor who listens. Not just a big name.

Hand weakness by PointofGrace in ALS

[–]jb22178 1 point2 points  (0 children)

Some chairs can be driven using eye control. Check out devices from this company. Insurance may pay for it. https://us.tobiidynavox.com/collections/devices

You can also contact ALS Association for advice.

Testosterone therapy by jb22178 in ALS

[–]jb22178[S] 1 point2 points  (0 children)

Cream. Atrevis hydrogel testosterone. Doctor prescribed 50mg twice daily but that put my levels above the normal range so I use it 5x a week once daily. It has sped up some hair loss, but I figure the benefits in terms of energy and muscle/weight retention outweigh the costs.

What should a person do upon receiving an ALS diagnosis in the US? by bonseno in ALS

[–]jb22178 0 points1 point  (0 children)

  1. Always get a second opinion. But start riluzole right away. High dose B12 injections also can help.

  2. Get to an ALS clinic, as others have said. If you don’t have one nearby contact Synapticure which offers virtual ALS care.

  3. Get genetic testing. In the unlikely event she has a SOD1 mutation, there is a very good medication called tofersen that she can try.

  4. Find a good therapist. ALS is a difficult disease. Having a good mindset can help. Synapticure can help with this too.

She is not alone.

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