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Kristina1

Senior member
Joined
Jan 26, 2017
Messages
822
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
City
Grafton
I was living in a house with tons of stairs that I had to go up and down many times every day. I was struggling to manage stairs due to upper leg weakness and poor balance.

So we moved to a small ranch style house with no stairs. After the first week I already noticed a huge increase in my energy. I couldn't believe how much the stairs had been draining me!

Well recently I had a Clinic visit and to my shock my FVC went from 74 to 91!

Just wanted to share. You may not realize how much certain physical activities that you can technically still do are actually draining you and putting a toll on your entire body.
 
I think when you told me about the stairs and energy that was definitely before radicava. How about the breathing?

And you are in a clinical trial? Timing for that?

I do think saving energy and making lifestyle adjustments make a big difference and thanks for sharing. ( the timing questions were mostly devil's advocate)

Happy for you!
 
Such good news!

I know that I harp on about conserving energy for the things you enjoy. I know that sometimes it irritates a little. But it's true. Conserving energy doesn't mean sit in a corner and do nothing.

I hope you get a lot of enjoyment with the results in this new home xx
 
Nikki, totally understand. I havent started Radicava yet. I finally got the prior authorization approval, but the hospital needs a letter from the insurance company with some type of approval code on it, and the insurance refuses to fax it, so we are all sitting around waiting for them to mail it. ugh!

I am in the amylyx trial, but i've been in it for several months, so I do think my feeling better has to do with the new house. My FVC continued to go down during amylyx, and only went up since I moved. But who knows, maybe it takes time for the drug to really show improvement, or maybe it's a combination of factors.
 
Whatever the reason, I'm so happy to hear your news. Thank you for sharing. Glad you don't have to struggle with stairs anymore. I have to walk down 8 stairs to get to the pool but when I decide it's time, I can take my power chair down the ramps. It's a little longer but I'm just glad our condo is accessible and the common areas are too.
 
We have 15 stairs that curve. We were quoted $14,000 for a chair lift. So, no chair lift for me. We are looking at the possibility of an outdoor platform elevator that would take me upstairs...as long as it doesn’t rain. Moving is not an option.
 
SanDiegoSue can you adapt so that you live downstairs only?

My house is on ground level but we could not get a PWC through most of the house so Chris lived just in a certain section of the house and the lounge room, which is the biggest room anyway was his living/bedroom. This worked really well because he was always in the centre of everything and we had plenty of room for all the equipment.
 
I know there are different organizations that will help with providing things like chair lift, ramps etc. I met the man behind the "50in30" bucket list organization and they had done stuff like that for PALS. You can apply on their website: 50in30 dot org
 
Sue,

Guardian Angels and your local ALSA both have small grants ($1,500 and $500) that you can add to anything you get from 50in30. Have you thought about a fundraiser or GoFundMe to help with costs? I've also heard of people contacting the Gleason Foundation.

This is something your family and friends can possibly help you with.
 
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