Hey to everyone (that means hello in the south) Newbee

[Arlee]

Hi Bruce,
Since November I have inhaled everything I can get my hands on about ALS and have held the Doctors feet to the fire for all they were worth. We have less than a handful of viable options and I would like to try all of them! Stem cell is really pricey with very little feedback on the outcomes using cord cells. Plus I have my eye on a 4 wheel drive wheelchair that costs about the same money.

The one thing that keeps screaming to me is the cannabis oil treatment... Now your talking to a guy who smoked one joint in High school and buys a 12 pack of beer every 2 to 3 years, so I'm not looking for an escape or a high. Something that will retard the progression and help me deal with the pain! "hence Colorado"

When the cramps first started I will never forget my first big one! It was the middle of the night, I woke up in so much pain I thought that I had been shot! I kept rubbing my hand on my leg looking to see where the blood was coming from! It was absolutely the worst pain I had ever experienced...

Everybody in the world has an expiration date, we don't know when ours will be but we know how (possibly) and I thank God that I have the opportunity to tell everyone That I love that I love them! Plus I have time to get rid of my stuff! I have more stuff than Fred Sanford but mine is good stuff! so I get to get rid of it on my terms and I am not leaving that burden to my family. Now if I get rid of EVERYTHING and Ive exhausted my bucket list and I am sitting around by the fire waiting on the Grimm reaper and they find a cure!! Im going to be really pissed!! Melbourne is nice, I live by the Eustis/Mount Dora area.

 

[Jlynn]

Arlee, I live in the sticks as well and we leave a note on the door so they just leave the package. Most of the time they just leave it anyway. Try a note and that will save you having to try and hurry to the door. I'm sure they will be happy to accommodate.

 

[Arlee]

Hi JL and Thank You
That's the problem...A package was stolen by a porch pirate some months back, they say and since that happened all deliveries must be signed for. Problem is it was not delivered here? but there GPS said it was. Its OK I only have a couple of companies still using UPS and I will fight hard that they let FedEx have their contracts. My rep will be contacting them soon! lol I enjoy being the squeaky axle. I'm working on the television crew now to do a burner story. My Fiance has advanced CMT A Neurological disorder that is similar to ALS but yet different as well. so they get double bad coming their way.

 

[chally]

Welcome to the nightmare arlee, sorry your here but now that you are you have found one of the best resources to help make the journey more comfortable. So post often let us get to know ya and we'll do the same. Ride em high! Chally

 

[KW1234]

Landport makes a secure box that you can have installed by you door. You provide a code on your order and the delivery people use the code to place your packages in the box. If you Google landport you should find them.

 

[Arlee]

I will look into that! Thank You. First I have to see if the Brown Shirts (UPS) running the company will accept that!! If so my new friend you have a happy meal in your future!!

ARlee

 

[Arlee]

Hi Chally and thank you! I get tired of logging on to Dr Goo Goo half of my time is weeding out the chaff. The personal stories are the most important to me because they hold so much truth. Who really wants to tell tales at a time like this in our life...One Lady wrote on a blog and said...Even though I was walking ok, I used my chair as much as possible so I kept as many little neurons alive as possible so that when I wanted to do something on my own I had a good reserve ready to go... I asked my Doc about this..LOL He got that Dr goofy look in his eyes like so many when they really do not understand something ,but I took her advice as gospel and I have been doing that ever since. I am starting to see here that many of you could be Medical Neuro Assistants and damn good ones! Experience Breeds Wisdom..

A

 

[scaredwifetx]

Arlee, i just realized i did not welcome you. My thoughts and prayers are with you.

 

[Angiegal]

Arlee,
Did you get the delivery thing worked out?

Angie

 

[lgelb]

Hey yourself, Arlee-- born in NOLA, grew up in Houston, so I can say that. Welcome to our corner of the world. You will fit right in. Moving this thread to the newbie slot.

For your package thing, the shipper can waive the signature requirement, and/or you could install a doorbell and/or IP camera at the boundary so you could see/hear 'em coming without a sensor.

Best,
Laurie

 

[Arlee]

Arlee,
Did you get the delivery thing worked out?

Angie

Hi Angie...
Thanks for asking but the answer is NO. UPS will not deliver without a signature because a Porch Pirate took a package. I cant "waive signature" or nothing. The driver has been great about waiting for one of us to get to the door but it is on those days that we are not here, is where the problem lies. I have done everything to avoid using UPS and its starting to work, just costs extra. I have to say tho, Some of the most vile and truly uncaring evil people in this world work at UPS. I guess I feel sorry for them. Life is to short to bother with them as many of us know... Thanks Angie

 

[Arlee]

Hey yourself, Arlee-- born in NOLA, grew up in Houston, so I can say that. Welcome to our corner of the world. You will fit right in. Moving this thread to the newbie slot.

For your package thing, the shipper can waive the signature requirement, and/or you could install a doorbell and/or IP camera at the boundary so you could see/hear 'em coming without a sensor.

Best,
Laurie

Thanks Laurie,
I installed remote doorbells (extra dinger) It has worked so far, I have a very patient UPS guy. As far as the company goes, because of a stolen package (or never delivered) I cant waive signatures. I am working on eliminating them from my life!
Have a great day!!

 

[Angiegal]

Hi Arlee.
Sorry to hear that you're not having any luck with them.
Looking forward to hearing more from your corner of the world.

Angie

 

[Arlee]

Hi Arlee.
Sorry to hear that you're not having any luck with them.
Looking forward to hearing more from your corner of the world.

Angie

Hi Angie and Thanks for the note! All seems well in my world. Its like I'm watching paint dry waiting for the Monster to make its next move! I'm starting to shut down my business and see where all this goes. I am still somewhat mobile, I am saving my 'Neurons" as much as I can, I want to do Disney one more time with my Grandson who has never been. So that's rather exciting. How about you? whats your world like? mine is warm and hot today. In the 80's 8) If you live North of the 36 parallel I feel sorry for ya and I will keep you aware of the weather in the Sunny South!

We are in the middle of Fire Season tho' I don't like it. It was bad enough when I could walk like a Native American Scout, but now! I cant walk anywhere without turtles passing me. Life is truly interesting.

I'm rambling so have a great day!

A