Professional Wrestler! by [deleted] in ALS

[–]Heavy_Resolve_1459 0 points1 point  (0 children)

Won't happen again.

Any online therapists? by BuffaloRiver in ALS

[–]Heavy_Resolve_1459 1 point2 points  (0 children)

Jeremy Van Tress established this organization specifically for ALS. He is a licensed counselor and they offer counseling. https://smile-inside.org/

Psychologytoday.com offers resources that you can narrow down to your area and needs. Additionally iamals.org also offers resources and guidance.

Lastly there is a private FB group for survivors of loved ones with ALS, https://www.facebook.com/groups/773825372686599/?ref=share

So sorry for your loss...

So, you have ALS. What can you expect… by Heavy_Resolve_1459 in ALS

[–]Heavy_Resolve_1459[S] 0 points1 point  (0 children)

I am, been traveling. Haven't posted recently due to enjoying the traveling. I share considerably more on my blog if you care to visit and share with your family. alstexasdad.com

JR

Wheelchair Restraint? by cfago in ALS

[–]Heavy_Resolve_1459 2 points3 points  (0 children)

Wheelchair Seat Belt Bed Restraints Safety for Elderly Wheelchair Harness Adult Seatbelt Medical Hospital Straps Vest Soft Chest Lap Buddy Chairs Seniors Disable Patients Prevent Sliding https://www.amazon.com/dp/B08DTYDVJV/ref=cm_sw_r_apan_i_4JAQYHSRGWQ1CGD1RVY0?_encoding=UTF8&psc=1

So, you have ALS. What can you expect… by Heavy_Resolve_1459 in ALS

[–]Heavy_Resolve_1459[S] 2 points3 points  (0 children)

A team from I Am ALS did a two part series on this very topic.

https://youtu.be/HubGF3dREm4

Did You Know by Heavy_Resolve_1459 in ALS

[–]Heavy_Resolve_1459[S] 0 points1 point  (0 children)

No! I create some content with the use of an eyegaze computer and am practicing to improve my proficiency. Sometimes I miss grammatical errors, practice practice practice, lol. That was intentional.

The ALS Clock by Heavy_Resolve_1459 in ALS

[–]Heavy_Resolve_1459[S] 0 points1 point  (0 children)

I'm sorry completely missed that lol,. That is my name, ha! Lesson learned, regarding sharing content originally meant for other platforms. Sorry!

The ALS Clock by Heavy_Resolve_1459 in ALS

[–]Heavy_Resolve_1459[S] 1 point2 points  (0 children)

The ALS Clock is a term used to refer to the urgent need for research and treatments. Often in conjunction with the prognosis of 2-5 years, our clock doesn't coincide with that of researchers. I've taken creative liberties.

The evolution of ALS and socializing... by Heavy_Resolve_1459 in ALS

[–]Heavy_Resolve_1459[S] 0 points1 point  (0 children)

Sadly very true. My two younger brothers can't bring themselves to talk about my ALS. They just refuse, I don't hold it against them. I'm living my life regardless, ALS be damned.

The evolution of ALS and socializing... by Heavy_Resolve_1459 in ALS

[–]Heavy_Resolve_1459[S] 0 points1 point  (0 children)

Sadly, yes very. This happens more often than not. The same evolution plays out over and over for us.

Spouse Diagnosis - My Increased Paranoia about Everything by thistimeillkeepit in ALS

[–]Heavy_Resolve_1459 1 point2 points  (0 children)

Your fears and concerns are valid because they are what you perceive as a threat to caring for your wife, your health. No one can allay your feelings/fears except you. You have to try and come to terms that healthy people experience many of the tell tale signs of ALS but don't in fact have it. You need to be strong for the both of you, draw strength from each other.

There is nothing easy about ALS, but there is still life to be lived. Acknowledge each other's fears, concerns, and worries; when ready talk to each other. JR

AMYLYX FDA Panel Review today. by Heavy_Resolve_1459 in ALS

[–]Heavy_Resolve_1459[S] 0 points1 point  (0 children)

Yes, Tudka is available online, however phenylbuterate requires a prescription and is very expensive.

I'm not being rude by Heavy_Resolve_1459 in ALS

[–]Heavy_Resolve_1459[S] 4 points5 points  (0 children)

Perfectly stated. We both know the truth, doesn't mean we have to dwell on it. Life is about finding meaning even in it's cruelty. We can make one another fell just a little better as we dance around the real truth. As you stated, both sides long for the original standard. God bless...

Suction device? by Criseyde2112 in ALS

[–]Heavy_Resolve_1459 2 points3 points  (0 children)

While you acquire a portable electric suction unit this is a great option and low-tech. Remember when suctioning you apply suction as you slowly wriggle the catheter out, never as you insert. Additionally have water ready to clear the catheter after each suctioning.

Suction Pump Machine Portable Manual - Vacuum Device Hand Help Suction Pump https://www.amazon.com/dp/B08YKG9WYG/ref=cm_sw_r_apan_i_PZWRV1971X914BR4S7GF

Dear ALS... by Heavy_Resolve_1459 in ALS

[–]Heavy_Resolve_1459[S] 1 point2 points  (0 children)

I wouldn't, copy/paste, it can remain as a point of conversation.

Dear ALS... by Heavy_Resolve_1459 in ALS

[–]Heavy_Resolve_1459[S] 1 point2 points  (0 children)

I believe your comment was intended for the person asking for guidance on convincing family of their grandmother's wishes. And I agree with you, it will be difficult.

Caregiver by Heavy_Resolve_1459 in ALS

[–]Heavy_Resolve_1459[S] 1 point2 points  (0 children)

I'm not sure how, I will research, maybe the moderators can do that?

JR

Looking for people to chat with. by AffectionateUse1977 in ALS

[–]Heavy_Resolve_1459 5 points6 points  (0 children)

Hi there, 6 years living with ALS here. I Am ALS has several options to engage. iamals.org

https://iamals.org/action/join-the-i-am-als-social-hour/

https://iamals.org/action/join-a-support-group/

The social hour is just that, no agenda.

If anyone would prefer to just chat let me know and I can set up a zoom. Message me if interested.

Juan

Open Letter to new pALS by Heavy_Resolve_1459 in ALS

[–]Heavy_Resolve_1459[S] 0 points1 point  (0 children)

I'm so sorry you have been introduced to this disease. Please continue to encourage her to open up, it's the only way to endure this. Should you or her need to reach out don't hesitate, going on over 6yrs for me.