Thanks for another update. You're looking really good and staying upbeat. It's interesting that you feel 'your time might not be long'. Is there anything in particular that has triggered that? You seem so well right now. Your end photos look fabulous. Look after yourself.xx
@@tallskinnywith6shots1 I'm sorry. Can't be very pleasant for you. I hope you keep enjoying life for now. It's a cruel disease. Hoping you have a good weekend. xx
Do you have a video about how you got Dx? I can assume you [sadly] had to deal with a long list of misDx's. I'm sorry for that & all you have had to deal(t) with. I've a friend that we are suspecting may end up w this or similar Dx, but it's almost impossible to get the Dr's to listen. She had Lyme twice, a few years later she began losing motor function in hands & dragging her L leg, some "nonspecific" pathology found on brain, spine MRI. She used a cane for many years, then had to get a PowerChair as things progressed over 4O years, still w no concrete Dx. Oh wow, I can certainly understand the questions & deliberations regarding where you want to live vs where the best area is based on what impacts your symptoms (ex: high heat, humidity, hurricane prone, frequent changes in barometric pressure vs cooler temps, lower humidity, more stable mm/Hg etc). Hope you can find the perfect area! Happy 10th Anniversary! You look gorgeous & your DH looks quite the dapper gent! 🎉🙏🏻🌹
Hello life has been really busy and I’ve had some miserable physical events. My first video ever talks about how I got diagnosed I am a genetic ALS patient I have had three family members diagnosed with ALS and my father had a related disease to our genetic form FTD with MND symptoms so when I started dropping things didn’t worry about when my legs were stiff. That was my ankle still stiff didn’t think about it but when my gate changed, I knew what it was because of my family history.. unfortunately my primary doctor noted motor neuron deficits and sent me to motor neuron neurologist, and I was diagnosed with ALS. I was confirmed the genetic type. I am a slow progressor. From being in a clinical trial, I am Lyme negative as well as other infections that can affect the neurological system My daughter likes this area. I have friends I used to have more family that lived here but most of passed so we own a house here. I don’t see us moving anytime. My little one wants to live here so that’s where we are. I hope you are doing well .
No, I do have familial ALS I have a slow progression which is different. It’s been confirmed by three different medical groups highly esteemed ones.. if you look at community page, you can see the confirmed diagnosis. No two people with ALS will present exactly the same. We all die the same though.
@@Tayyab-hr1gp What do assume an ALS patient to look like? Because different people present in different ways depending on the stage of the disease and the type of disease. There is more than one ' type' of ALS. They're all horrible though and one of the cruellest afflictions. Most do not go from healthy to bedridden and paralysed overnight. This lady has already explained that she's a slow progresser and frankly, we should be happy about that for her sake. Quite honestly, I think you need to stop asking insensitive questions.
@@tallskinnywith6shots1 I'm so sorry people question you like this. You don't deserve it. Yes, some awful people fake illness but you're not one of them. xxx
Nothing like a wedding renewal during a hurricane!
yAY ! I found july. Still missing comments.
Thanks for another update. You're looking really good and staying upbeat. It's interesting that you feel 'your time might not be long'. Is there anything in particular that has triggered that? You seem so well right now. Your end photos look fabulous. Look after yourself.xx
@@teresa2638 hi Teresa, I look good sitting in the chair :) I can still walk and talk. It’s just something internal. I don’t know what it is.
@@tallskinnywith6shots1 I'm sorry. Can't be very pleasant for you. I hope you keep enjoying life for now. It's a cruel disease. Hoping you have a good weekend. xx
@@teresa2638 thank you love it is a cruel disease
Do you have a video about how you got Dx? I can assume you [sadly] had to deal with a long list of misDx's. I'm sorry for that & all you have had to deal(t) with.
I've a friend that we are suspecting may end up w this or similar Dx, but it's almost impossible to get the Dr's to listen. She had Lyme twice, a few years later she began losing motor function in hands & dragging her L leg, some "nonspecific" pathology found on brain, spine MRI. She used a cane for many years, then had to get a PowerChair as things progressed over 4O years, still w no concrete Dx.
Oh wow, I can certainly understand the questions & deliberations regarding where you want to live vs where the best area is based on what impacts your symptoms (ex: high heat, humidity, hurricane prone, frequent changes in barometric pressure vs cooler temps, lower humidity, more stable mm/Hg etc). Hope you can find the perfect area!
Happy 10th Anniversary! You look gorgeous & your DH looks quite the dapper gent! 🎉🙏🏻🌹
Hello life has been really busy and I’ve had some miserable physical events. My first video ever talks about how I got diagnosed
I am a genetic ALS patient I have had three family members diagnosed with ALS and my father had a related disease to our genetic form FTD with MND symptoms so when I started dropping things didn’t worry about when my legs were stiff. That was my ankle still stiff didn’t think about it but when my gate changed, I knew what it was because of my family history.. unfortunately my primary doctor noted motor neuron deficits and sent me to motor neuron neurologist, and I was diagnosed with ALS. I was confirmed the genetic type. I am a slow progressor. From being in a clinical trial, I am Lyme negative as well as other infections that can affect the neurological system
My daughter likes this area. I have friends I used to have more family that lived here but most of passed so we own a house here. I don’t see us moving anytime. My little one wants to live here so that’s where we are. I hope you are doing well .
You are looking as you don't have ALS.
No, I do have familial ALS I have a slow progression which is different. It’s been confirmed by three different medical groups highly esteemed ones.. if you look at community page, you can see the confirmed diagnosis. No two people with ALS will present exactly the same. We all die the same though.
@@tallskinnywith6shots1 yes I know as you told in your videos you have ALS. but you are looking as you are not patient of ALS.
@@Tayyab-hr1gp I have it and I have doctors diagnosed me. Sorry I don’t look the way you want me to. I am a real person sharing my story with ALS.
@@Tayyab-hr1gp What do assume an ALS patient to look like? Because different people present in different ways depending on the stage of the disease and the type of disease. There is more than one ' type' of ALS. They're all horrible though and one of the cruellest afflictions. Most do not go from healthy to bedridden and paralysed overnight. This lady has already explained that she's a slow progresser and frankly, we should be happy about that for her sake. Quite honestly, I think you need to stop asking insensitive questions.
@@tallskinnywith6shots1 I'm so sorry people question you like this. You don't deserve it. Yes, some awful people fake illness but you're not one of them. xxx