ALS is a B word!

[slopokahontas]

I'm usually very positive, but finding it harder and harder lately! ALS has stolen so much from me already and I'm still just at the beginning! I lost one of my jobs because insurance won't cove me driving patients if I have ALS. My other job is threatening to let me go because I'm moving slower. I'm ineligible for SS because I was a stay at home mom for 6 years. Who cares about all the years I put in before! I can't pay my bills and when I've applied for help, I'm told the programs are for people gettting on their feet, ALS might make me ineligible! I need a ramp to get into my house, it's a year waiting list! I've spent my life working my ass off in the medical field, loving every minute of it! Going beyond what was expected because I loved my patients. I am now the patient and now understand their frustrations first hand!
I thought after the ice bucket challenge, people were more educated but when I explained to my boss why I'm moving slower, he said "Don't know what that is, but it must suck"....You bet your ass it sucks. It sucks to look normal but drop things, trip over your own foot, choke on my coffee, have constant pain of muscle cramps, have people think I'm mad because my jaw cramps up, can't chew my snickers, can't run with my kids, can't open a bottle and my road has just begun!
Sorry to be a Debbie downer, but you all are the only ones that might understand!

 

[bigmark1954]

I am sorry to hear all of that, and can relate to your situation. This isn't a very glamorous existence we have. The system has let us down as well.
Hopefully tomorrow will be a better day!

 

[MaxEidswick]

>I need a ramp to get into my house,

height?

 

[slopokahontas]

It's 5 steps up. Not sure about exact measurements.

 

[GregK]

Two thoughts on the ramp: if you're religious contact your church, otherwise contact the local Boy Scout organization. Building a ramp is a good project for Scouting.

 

[slopokahontas]

Oh my gosh GregK, I'm renaming you GregtheGenius! What a great idea!

 

[Atsugi]

For a ramp rising that tall, you might need quite a long ramp--from 13 to 20 feet long.

I built a wood ramp only 6" tall and it needed to be about 40" long, if I recall, so the wheelchair could go comfortably over it without feeling like tipping.

See good ramp tips at http://www.lowes.com/projects/build-and-remodel/build-a-wheelchair-ramp/project

 

[Grumpy'sWife]

A couple we met at support group told us that they had a ramp built by their local Boy Scout troop. They also went to Lowe's with a letter from their ALS clinic and Lowe's gave them 75% off of the supplies. I don't know if every Lowe's will do that but our local one did.

 

[davbo49]

they told me . my ramp has to be 1 foot to 1 inch high. 5 steps would be a long one. i did do like what greg said. i got a lot of volunteers to do the work but there was no materials in the works. thanks to a friend that's been working on getting that together. it's worth trying they might have funds setup where your at.

 

[MaxEidswick]

to all: I have two from the old house but they are only 4-6" -- ftgh

 

[travelbugg]

Hi slopokahontas (cute name!), I know what you mean about people who don't get it. I took my husband on a plane recently, and we were the first to arrive at the gate. My husband was seated comfortably nearby while airline staff got his wheelchair and I went to get into the lineup to check our bags. Because I had so much to handle, I was going slowly and another couple just raced right around me and placed their bags at the front of the line and then bounced off to get coffees. When airline staff started checking people in, they came and pulled me from the line to check my husband and I in together. You should have heard the swearing from the couple who thought we were jumping the line! They were so self-absorbed they didn't even see me there ahead of them.

Ditto from a couple who entered the handicapped security line because it was shorter and then complained because it took so long for them to pat down my husband in his chair, and then assist him through the metal detector. I wanted to slap them, so you must be very strong to not answer back to your boss.

As for the ramp, have you considered an electrical lift instead? My friend took the end railing off his mother's porch and installed a lift he bought on Kijiji or Craigslist. It's in a snowy area, and I thought he'd have problems, but they just clean around it when they clear the snow and he said it works well. I was looking into an interior stairlift a while ago and could not believe how much stuff was available on these sites. Just a thought.

 

[Janie H]

That is one of the perks of als, going to the front of the line.

Janie

 

[slopokahontas]

Travelbugg, that's a shame people are so impatient! A if their getting on the plane first makes the plane leave faster! That's partly why I go by slopokahontas! Haste makes waste in my world! Everyone spends their life, hurry up then wait! I figure I see more and enjoy life at a slower pace and waiting is great people watching! My mom was stuck in an airport for two nights once while people yelled at the workers about how THEY had to go first because of meetings etc. My mom asked them why they felt most important, did they feel things couldn't happen unless they were there. They said yes. My mom said "Honey the cemetery is filled with people that thought they were irreplaceable."

Anyhow, you all are genius! I put a call in to the boy scouts, and their leader said if they can't his church will! Now to work on supplies after we find out the length! To think I moved here prediagnosis to minimize bills thinking hopefully I'll be able to go back to my previous job once they found out what was wrong with me, to find out I moved to a disabled persons nightmare! Just glad things are moving thanks to your great ideas! I've really been at an all time low!

I get frustrated when people say the normal this that make people feel better like..."It'll get better", "something good will come out of this"...."don't worry, you are strong"......I know I'm strong, I know this is a test of my character, I know I'll learn all sorts of things from this. ALS rips away all that a person defines themselves by. I have to redefine myself to a huge degree. We all do, the PALS and CALS. It hard to take one day at a time when you feel like you have to prepare.

I remember looking up my symptoms and seeing ALS a possibly, disregarding the possibility because it was statistically impossible and ridiculous to stress over. Aaaaah ignorance was bliss!

 

[dalvin]

I so understand what your saying slopo, sometimes seems like have to redefine myself everyday. Puts new meaning to the phrase ' life is like a bed of roses '. Got it's nice moments but way too many thorns

 

[Atsugi]

AAAAAH!
I see now.

It's pronounced SLOW POKE - ahontas.

(I originally wondered why someone would call themselves SLOP - okahontas.)

Silly me.