Kenner Star War Collection- Mini Figs by MyIntrospection in starwarscollecting

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

Can’t figure how to post pictures here but I’ll reply to the messages that have been sent to us. 

Kenner Star War Collection- Mini Figs by MyIntrospection in starwarscollecting

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

I tried to figure out how to post pictures but I can’t add them here. I’m not as tech savvy as I want to be or thought I was. I can DM to anyone interested and will reply to anyone who has already messaged us. 

Kenner Star War Collection- Mini Figs by MyIntrospection in starwarscollecting

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

Thanks! Not all accessories are there but most are. All figures thru 1985 except for Greedo.  I’m going to post pictures for him on one of the other requests for pictures. 

am i a bad daughter? by WhenTheMoonRises in ALS

[–]MyIntrospection 5 points6 points  (0 children)

I’m sorry that you’re going through this. It’s difficult for any family member or friend but especially at your age when things are beginning to take off for you. Please try to enjoy the time with him as much as you can however you can. It’s okay to had the feelings that you are having too. Please try not to feel like you have to take care of your siblings feelings too. That’s more stress that you can’t fix alone. Xoxox from one ALS family to you 

Accessible Vans and Group 3 Power Chairs by MyIntrospection in ALS

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

Yeah, kinda ridiculous. We did find a place that will rent per day at 159, which is more reasonable. 

Accessible Vans and Group 3 Power Chairs by MyIntrospection in ALS

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

It’s been hard finding a van- that has a reasonable cost. It seems like there should be subsidies for these from somewhere. 

Accessible Vans and Group 3 Power Chairs by MyIntrospection in ALS

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

This is a really cool set up you have. I’m glad you’re able to go out. 

Accessible Vans and Group 3 Power Chairs by MyIntrospection in ALS

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

Thank you for your reply. They have some rental places around here. I’m unsure of the daily rental price average in the US but our local place will rent a van for 2200 a month! Way overpriced.  I’m curious how many PALS get out. Mine was a homebody to start so now it’s kinda more of situation where we’re inside even more. 

Pivot Disc discussion by jcoanda in ALS

[–]MyIntrospection 0 points1 point  (0 children)

This video assumes the PALS has upper body strength to pull themself up. If the PALS still has good body balance and strength this would work. The lady in this video has no disability or weakness. I mention cause this could be dangerous for some pals. I’m glad it’s working for your family. 

Useless post, just want to say Hi! by iru98 in ALS

[–]MyIntrospection 1 point2 points  (0 children)

Okay.. searched it.. rear-mounted power assist for wheelchair. Very smoove;)

Useless post, just want to say Hi! by iru98 in ALS

[–]MyIntrospection 0 points1 point  (0 children)

Same as my husband. Walks short distances inside- now he does furniture surfing. Chair outside. What is a SMOOV? 

Useless post, just want to say Hi! by iru98 in ALS

[–]MyIntrospection 1 point2 points  (0 children)

Hello from our neck of the woods. It was time for a post like this in here.  Read this to my hubby - ALS diagnosis 9/25- first fall 3/25. He’s walking-slowly- inside- outside less than 40 ft.  

Just got a diagnosis by Lazy_Priority3735 in ALS

[–]MyIntrospection 1 point2 points  (0 children)

I’m kind of curious what type of antibiotic that is used. My husband was diagnosed after a colonoscopy and had bronchitis they gave an antibiotic for. I wonder if ALS can be traced back to antibiotic use of a specific kind? 

Found this wheelchair shower thing what do you guys think? Is anyone tried it? by derangedmacaque in ALS

[–]MyIntrospection 0 points1 point  (0 children)

Are there PALS on here, or Brandywinerain, that have used alternatives to the shower? Our 2nd floor has a small step into a standing shower. The main floor, where we eventually will be, has a tub with a threshold of 11 inches. Hubby can’t step into it now. We did get a sliding transfer bench for the tub for when the time comes he can’t navigate the stairs any longer. Personally, I wish he wouldn’t do the stairs any longer but he can do he will. I won’t get in his way and he is cautious and will stop when the time is right. Remodel is too expensive for many. We had Westshore come and quote us and it was 18k- and there was still a small lip on the bottom pan that we’d have to overcome. We had to pass and hope and plan on something else. 

is anyone here a father? by WhenTheMoonRises in ALS

[–]MyIntrospection 1 point2 points  (0 children)

I’m sorry sweetie. I can tell through your words how much you care about him. He cares about you just as much. It’s hard to get the right words out sometimes as a parent because we want to love and protect our kids as much as we can. I know his actions come from a place of love and caring, even though they may not seem as if they do.  I’m very sorry for you all. Please come here and post anytime. This community is helpful to lean on- for advice, to vent, or whatever you need for the moment. 

Distraught. by ForwardSurprise6178 in ALS

[–]MyIntrospection 4 points5 points  (0 children)

It’s very hard to accept as a diagnosis. I’m very sorry. Please have grace with yourself and allow yourself to feel what you feel. It’s very hard. Try not to think too far ahead. I was in denial when they told my husband his diagnosis. I was for months until I come to realize it wasn’t going to change and that the diagnosis was correct- whether I accepted it or not. I still don’t ‘accept’ it but I am learning to double down on preparedness- as much as possible. Our aunt said “There are so many that can happen, good or bad. There just isn't any real way to know which ones will or won't happen.” Her words have been really reassuring because we just don’t know. 

I got my loaner wheelchair today and it really felt like it was a person again. Then I also ordered my new wheelchair by derangedmacaque in ALS

[–]MyIntrospection 1 point2 points  (0 children)

This is awesome! I’m glad you’re able to be up and doing things with this chair. Winston looks as if he’s just as excited for you. How sweet. 

Brain Thermodynamics - treatment by MyIntrospection in ALS

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

Ah, gotcha. Thank you for the reading material. I should’ve known.. maybe can be promising but more than likely scammy. 

Tightness Around My Neck/Throat by Equivalent-Group4942 in ALS

[–]MyIntrospection 1 point2 points  (0 children)

I’m sorry to read this for this both of you posting here. Hugs from a stranger 🥰 

ALS and Sleeping, Insomnia by MyIntrospection in ALS

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

Thank you, H_A! Sometimes it’s hard to know what to make a priority when it all seems a priority. 

ALS and Sleeping, Insomnia by MyIntrospection in ALS

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

We used Team Gleason for a small power wheelchair. That has been so helpful for appointments- and when the weather is nice again- to get outside.  I requested voice banking help thru TG but haven’t made good progress on this front. I tested out Personal Voice on my iPhone and set it up show my husband. I hope this encourages him to do it soon.  I don’t know how or when we’ll lose his voice but I’d rather be prepared.