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Alison Needs Your Help

I am Alison Largent; I have Stiff Person Syndrome or SPS and chronic Lyme.

Updates (16)

February 23, 2021

I AM WALKING!!!! Well lurching like Frankenstien is more like it! The treatments are helping, thank God as it is the last of my options. However it is a fine line that I am on with my lab reports and immune system as anything makes it flare and then I am back in bed for days or am frozen like a popsicle.

Lately I am getting a small window of a warning before these episodes happen, but they are so severe that my face is included along with my throat and breathing. Its pretty scary when your throat closes and you cannot get air in or out.

And that is not all; like a stroke victim I have begun a face droop on one side due to the way my muscles pull during a popsicle sesion….one side pulls up in an Elvis sneer while the other side pulls down….so as I age I have more lines one one side…Unfortunately I get A LOT of BOTOX for my other muscles and not for wrinkles so well that is they way I look and so be it….its the least of my problems.

I am attempting to try to paint while I am lucid for a bit, and live my life to the fullest and just keep going! For those like me with this dreadful disease keep up the fight!

Thank you for checking in!

Peace out!

August 28, 2020

I’m alone in my thoughts, lost in my head with a body that no longer works with me. So frusterated as you know what you once were capable of, and yet now you can’t even follow a color coded calendar of when to pay what bills, (our double check to make sure nothing is missed).

Trying to type, and yet only 3 fingers working with me, and every movement of my arm makes zingers up into the neck into the base of brain. Spelling of words are gone, and even finding the right words are difficult. Faces are recognizeable but the names of some are like a blur as if an eraser was swiped across the chalkboard of your mind and the word gone for now only to pop up again in the middle of the night maybe 2 days later.

Forgive the spelling as I mentioned…..i can’t trust what keys my fingers will hit and sometimes its multiple so you get some weird words in here and caps….so don’t take any meaning to it.

Memories are faded and some you can’t trust during the episodes….

I wanted to write this the other day but, well my body had other plans….its ok, you just go with the flow……LIKE CAPS you just go with the flow as it is too much to stop your thoughts and start back again…..you risk repeating – like this was up a day however I was in the start of a major episode and so I thought I better come see what horror was written….and what the words looked like. Really I don’t wan’t to scare others, or make people feel pity. I want people to know what Stiff Person Syndrome and Lyme does to a person. You lose yourself, your mental sharpness, your mind, your memories and even your personality as you fight so hard to not take out on others the anger and the frustration you have inside you. THe PURE RAGE…..If I had the strength and didn’t know better I would take my arms and just shatter everything off my dressers, tables etc and leave a busted glass mess. However, I know what some things cost, I would never get back up from the ground once I got down to try to clean it and the dogs would end up at the vet and me I would probably be committed.

At first no sounds and no lights were a must, now I have learned soothing music helps, so I tried asking the unnamed one in the room for songs, but my mouth wasn’t working right so well you can say the selection was not quite desireable at that time. I like Korn and all but not with a screaming migraine and a body trying to seize up on itself.

Got Pink Floyd on, and that was it! I used to like some when I was younger, but now it takes on a whole new meaning…it relaxes and soothes and just takes you away from the pain……a new glimmer of help. And somehow Metallica came on – who knows – but it was “the unforgiven” and that too hit a cord…… When you take the time and just let something else flow through you it can transport outside the pain some: its more a background nuissance instead of being front row at the concert.

So, I meant to have something better in here – but like I said my brain had it – and poof it is gone….and I already have this first edit as far as I can take it today……so let’s jump to the end and say…

Thank you to all those that have helped! You cannot imagine what an incredible gift for us to have so we could take care of medical bills, especially now as I appear to be progressing quickly.
I cannot imagine what the alternative would be without the amazing help from a crazy great man that stepped up to get this going! And the followers that have kept in touch and helped him and us reach a number that was never thought to be attainable. THANK YOU & LOVE YOU!

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Guestbook

July 15, 2020

Best wishes, and thanks for setting such an inspiring example of living life to its best available during tough challenges.

Sara Laas

July 6, 2020

So awesome Mack! Keep walking buddy. God bless.

Ryan Evans

July 1, 2020

Keep up that great spirit and positive energy.

Anonymous

June 20, 2020

Very proud of Mac's efforts. Hello to Ali.

Steven Keenan

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