To all loved ones, all patients suffering from this terrible disease, stay strong and keep fighting. My father has been fighting for 20 years. It's a very arduous journey, but life is too beautiful to give up.
Beta we from India 🇮🇳 too my mother passed away due to MSA this june she having urine problem posture in balance low speech kabz smelling swelling problems 6months later she died due to respiratory failure 😢 my Maa I miss you every time
I'm from India too.Which part u are. from? im from Ghatkopar. Mumbai I was diagnosed in 22022 and my condition became worse. after fracturing my leg due to overconfidence At. the age of 662. i have double vison. so though auto correct is on kindly excuse me for typos if any. please! keep in touch
My wife was diagnosed with MSA 3 years ago. In all honesty, she is the most caring and loving person I have ever met. This disease destroys all aspects of what it means to live a normal life. For family members, the world turns on a dime and what we expect to last forever evaporates in a matter of months. To all of those with MSA, be tenacious and live each day to the absolute fullest. Try to capture all of the joy you can out of each moment you have. Listen to the singing birds outside, look at the beautiful plants and see yourself smile as you watch little children play their games. And remember, a cure maybe only a day away so while you are squeezing every ounce of enjoyment out of daily life and living moment to moment as best as you can, you can be healed within your MSA, from any suffering by the God who loves you more than is humanly possible to understand.
Hi my husband Alan got MSA your video was very good god bless you I give you my heart love from Scotland UK in Scotland we don't no very much about MSA you help me out for Alan ceep safe and lovely family xxx🏴🏴🏴❤️❤️❤️
My grandmother had symptoms from 2017 an it was me this year who told her to go to her specialist appointment an mention msa after reading apon it to help her an that's how she finally got to get answers. An if it wasn't for me living in a country that's well behind she prob would of never got the diagnosis. Watching her gp fail her over the years an watching the symptoms progress . An in her mind it was a relief because she was very upset not knowing it depleted her emotional an physical wellbeing . An I knew I could find answers for her because I got myself diagnosed with lupus after having it for 2 years I knew I could look for a diagnosis for her . Call it a gift of mine as u will . An when I saw msa I had a gut feeling come to me that it was that . Going through all the symptoms since 2017 she had all of them an even the rare ones an uncommon ones . Was glad to get into that 30% only because she was getting worst an the doctors didn't no what to do or what it was .
Edith you are great to hear So positive. It all makes sense to a fellow msa sufferer. Im living in Ireland age 66 and was diagnosed 5 yrs ago. It's progressing rapidly these days I have great friends and family supporting me as well as medical assistance. I send my very best wishes to everyone who is affected by this disease Brian
I either have Craniocervical Instability or MSA, still yet to be determined. The fatigue that I am experiencing is immense, especially in the first 6 to 8 hours of the day. I can barely shower without having to lay in bed in agonizing fatigue for hours, much less walk 4 to 7 miles a day. I am 2 and a half years in, I still have good motor control when I’m not fatigued, but I am 37 years old and this started when I was 35. This is debilitating but whatever it is, I pray it’s not MSA.
I have craniocervical instability too and a history of parkinsonism. I was exposed to mold and injured from a fall trauma which caused ligament problems. Not to mention all the medications I was on. I have multiple symptoms coming from my brainstem. Might have to get evaluated for MSA or parkinsonism too though because I had things occurring that didn't seem to be related to the instability either.
My husband was diagnosed with MSA a year ago.. it is very difficult to watch someone you love go from able to totally take care of themselves to being wheel chair bound.. my husband also has the authostatic blood pressures. And speech and stability issues when walking..it is very difficult when you have to become the doctor and deal with the all the time changing symptoms! Praying for your family!
my dad also has been diagnosed with MSA-P this year. watching how his functions are changing and his capability to do things himself is so hard. Praying for your husband 🙏🏼
Hi Edith I will be co-hosting a podcast called MSA Crusaders. My co-host and myself have both been diagnosed with MSA. We are interviewing patients and caregivers in hopes to create awareness. I would love to have you and your daughter on the show to share your story.
To all loved ones, all patients suffering from this terrible disease, stay strong and keep fighting. My father has been fighting for 20 years. It's a very arduous journey, but life is too beautiful to give up.
Hello i m from India diagnosed with MSA disease i m ;53 years having balance speech and bladder problems 😢 Good to see edith walking on her own 👍
Beta we from India 🇮🇳 too my mother passed away due to MSA this june she having urine problem posture in balance low speech kabz smelling swelling problems 6months later she died due to respiratory failure 😢 my Maa I miss you every time
I'm from India too.Which
part u are. from? im from Ghatkopar. Mumbai I was diagnosed in 22022 and my condition became worse. after fracturing my leg due to overconfidence
At. the age of 662. i have double vison. so though auto correct is on kindly excuse me for typos if any. please! keep in touch
I was diagnosed with MSA-C 3 years ago and I know that is an everyday challenge ... and Edith is such a lovely lady ... may the peace be with you !!!
My wife was diagnosed with MSA 3 years ago. In all honesty, she is the most caring and loving person I have ever met. This disease destroys all aspects of what it means to live a normal life. For family members, the world turns on a dime and what we expect to last forever evaporates in a matter of months. To all of those with MSA, be tenacious and live each day to the absolute fullest. Try to capture all of the joy you can out of each moment you have. Listen to the singing birds outside, look at the beautiful plants and see yourself smile as you watch little children play their games. And remember, a cure maybe only a day away so while you are squeezing every ounce of enjoyment out of daily life and living moment to moment as best as you can, you can be healed within your MSA, from any suffering by the God who loves you more than is humanly possible to understand.
Hi my husband Alan got MSA your video was very good god bless you I give you my heart love from Scotland UK in Scotland we don't no very much about MSA you help me out for Alan ceep safe and lovely family xxx🏴🏴🏴❤️❤️❤️
Thank you very much love from Scotland UK xxx 🏴🏴🏴💗💗💗💗
My grandmother had symptoms from 2017 an it was me this year who told her to go to her specialist appointment an mention msa after reading apon it to help her an that's how she finally got to get answers. An if it wasn't for me living in a country that's well behind she prob would of never got the diagnosis. Watching her gp fail her over the years an watching the symptoms progress . An in her mind it was a relief because she was very upset not knowing it depleted her emotional an physical wellbeing . An I knew I could find answers for her because I got myself diagnosed with lupus after having it for 2 years I knew I could look for a diagnosis for her . Call it a gift of mine as u will . An when I saw msa I had a gut feeling come to me that it was that . Going through all the symptoms since 2017 she had all of them an even the rare ones an uncommon ones . Was glad to get into that 30% only because she was getting worst an the doctors didn't no what to do or what it was .
Edith you are great to hear
So positive. It all makes sense to a fellow msa sufferer. Im living in Ireland age 66 and was diagnosed 5 yrs ago. It's progressing rapidly these days
I have great friends and family supporting me as well as medical assistance. I send my very best wishes to everyone who is affected by this disease Brian
I either have Craniocervical Instability or MSA, still yet to be determined. The fatigue that I am experiencing is immense, especially in the first 6 to 8 hours of the day. I can barely shower without having to lay in bed in agonizing fatigue for hours, much less walk 4 to 7 miles a day. I am 2 and a half years in, I still have good motor control when I’m not fatigued, but I am 37 years old and this started when I was 35. This is debilitating but whatever it is, I pray it’s not MSA.
I have craniocervical instability too and a history of parkinsonism. I was exposed to mold and injured from a fall trauma which caused ligament problems. Not to mention all the medications I was on. I have multiple symptoms coming from my brainstem. Might have to get evaluated for MSA or parkinsonism too though because I had things occurring that didn't seem to be related to the instability either.
@@okzoomer5728 It’s crazy to think that I’m not the only one in medical limbo right now.
My husband was diagnosed with MSA a year ago.. it is very difficult to watch someone you love go from able to totally take care of themselves to being wheel chair bound.. my husband also has the authostatic blood pressures. And speech and stability issues when walking..it is very difficult when you have to become the doctor and deal with the all the time changing symptoms! Praying for your family!
my dad also has been diagnosed with MSA-P this year. watching how his functions are changing and his capability to do things himself is so hard. Praying for your husband 🙏🏼
The daughter that made her house for her mom. What a nice daughter, and thing to do.
Thank you for sharing. You are inspiring. I wish you the best.
lovely caring daughters🤗
Hi Edith I will be co-hosting a podcast called MSA Crusaders. My co-host and myself have both been diagnosed with MSA. We are interviewing patients and caregivers in hopes to create awareness. I would love to have you and your daughter on the show to share your story.
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so familiar to me
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