My loving mother has been diagnosed with MSA today. She was diagnosed with Parkinsons in 2016, and it only ever got worse. 3 DBS surgeries, countless therapies, and it has led us to this day. As I type this, I want to thank you for this video and channel as I have just discovered it. It has just been a giant wave of emotions today for my family and I, and I'm just glad there are some resources that can help us get started to help us care for her, and understand, to the best we can at his point.
My father has this terrible disease, the understanding, care, and professionalism around this disease is non existent, it has torn our family apart, a healthy hard working man turned into a bed and chair bound prisoner.. 😢 5 years after this video was posted...and still they have done nothing to help MSA patients, they still don't even know how you catch it. this lovely sweet gentleman passed away 6 months after this was posted.
I lost my partner of 14 years just a month ago from MSA . It was an awful disease . I was his 24/7 caregiver . He truly suffered . I miss him so very much .
My GORGEOUS HUSBAND who is 53 yrs old has MSA. Diagnosed August 2019. We are BEYOND DEVASTATED! I can't LIVE without Him. I am tied to this man by a million threads. I know the HOLY SPIRIT is comforting me, but this Pain is making it hard for me to Breathe. I LOVE YOU ANTHONY MOORE❤
Dear Sena, same here. My gorgeous husband, the love of my life was diagnosed in 2019 at 54. I love him so much. I cannot live without him. They told us it was Parkinson's and they still do. but the symptoms just don't match and his progression is so fast. From going out for runs less than 18 months ago to not being able to out of bed without assistance... it-s just devastating. I pray that he and everyone will be healed. A miracle cure. An accidental discovery for all I care, but something will happen. I love him, I need him to be here.
My dad was diagnosed with MSA in 2008 but symptoms had started a year before that. He has been bed bound since 2014. If i most choose one advice to give, it would be do a colostomy whenever u can before it's too late. Cuz constipation was a very big issue for my dad since 2007( very common in MSA and PD). 5months ago my dad had to do it because of sigmoid volvulus ( left hemicolectomy). He has been much better since then. It should've been done before but no doctor ever agreed on that as a solution. What even worse is that one doctor even laughed at my face when I suggested this in 2010. My dad at that time was able to walk and talk. He was down for that too. It's sad we had to do it as an urgent operation. His overall health was poor . His lunges were very effected by general anesthesia. The operation table effected his back very much since he had to lay down for 4 hours. He has sever reduced bone density. He only weights 43kg. Sometimes you wish you dont have to say this, some doctors are a**holes and dont really understand MSA and how important to reduce it's side effects even if it's too early.
Thank you so much for writing in and sharing your experiences and comments. As a rare disease, raising among medical professionals is only one piece of a large puzzle of tackling the disease, alongside gaining interest from researchers, connecting people to support, and more. However, it is very important and your point is valid: the more the doctors know about MSA the netter the care and management can be.
My dad succumbed from MSA just a month and a half ago (after first being officially diagnosed two years ago). He was only 65, and my heart breaks every time I think of the wonderful qualities he had that were taken away by that horrible condition.
I lost my father to this disease a little over a year ago. He was a larger than life individual that lit up a room whenever he entered it. To see what this did to him will always be hard for me to comprehend. I can only hope we bring more attention to MSA every day, and find a way to beat it!
MSA is horrible I lost my dad last year this disease it’s the worst I hope someone finds a cure it is something you don’t want anybody to go through, prayers to all of those who has a loved one battling with this disease
My mom died from this in 2014. She was diagnosed in 2007 . It was horrible to her slowly died because of this. Because she loved to have a control about all things.
Brings me to tears . I lost my mom 12 years ago to this horrible disease. The whole family felt so helpless ,like what your family is feeling . my thoughts and prayers go out to all of you. God bless
My dad was diagnosed with MSA two years ago. I agree, the whole family is hit with this terrible illness. Thank you for sharing your story. Bless you all.
My 2nd cousin died of this. She was only in her 50's. She was a beautiful woman who loved to drive her custom purple Harley. May she always ride upstairs. Love ya Debbie ♡
Your comment got my attention because I'm 43 and diagnosed about a month ago and I ride a custom purple Harley, so I just wanted to say I'm sorry for ur loss.
I wish with all my heart that this illness will be fully recognised!!! I know and understand your heartbreak as I am living it now and I do not know which way to turn as there is no support!!! you are incredibly brave!!! xx
My husband was diagnosed as having Atypical Parkinsons in 2013 but he has since been diagnosed with MSA. It is awful to watch my beautiful husband slowly lose the abilities and skills that we take for granted. I miss his voice, his smile, his lovingly tight hugs.
Hi Debbie, my husband I believe has MSA. All the symptoms match him but the neurologist doesn't say it. Only about 2 times it was mentioned that it MIGHT be "atypical Parkinson's". I'm wondering why our dr. doesn't say MSA. It's seems obvious to me but I don't want it to be said infront of my husband. I'm thinking maybe I should call her and ask her directly what her opinion is. He was initially diagnosed with Parkinson's July 26, 2019.
I lost my father october 2016 from MSA this story made me cry. Thank you all for understanding. He was diagnosed january 2016. I watched him disappear. I could tell how awful it was for him and the pain he went through.
My heart goes out to you and your brave family.Your story is mine- My dear husband is nearly at the end of his MSA battle- a more horrifying and cruel disease you'd be hard pressed to find.
My dad has just been diagnosed with this, he's only 59 and I'm 23. Hearing about people dieing from this is so sad because I really don't want to lose my best friend without him walking me down the isle and seeing my kids grow up (when I have them). Nobody seems to have anything positive to say and I'm losing hope.
There is hope Bethan. If you are based in the United States or the United Kingdom, ask your dad's neurologist about participation in Phase III clinical trials of Verdiperstat.
@@kylosun thanks for this information! We are based in the UK and emailed the MSA Trust, they say they don't know anything about the drug and all the information seems to be American. Is there any information you could share about UK trials please?
My father died last week from MSA, finally cause of death was pneumonia caused by a lack of muscle strength to keep his lungs clear. His symptoms started differently though, at first it was his blood pressure....he fainted quite a few times due to low pressure. He was initially diagnosed with "Failure of the autonomic nervous system", but later when he developed Parkinson like symptoms too, the MSA diagnoses was made.
We are so sorry for your loss. May he be in peace now. Thank you for writing in, we hope you continue to be here to offer comfort to others experiencing the same pain.
Thank you. If there is one thing we (the family) learnt along the way, it's how no-one can tell you how much time someone with MSA has left. We all thought my father was going to die 6 months ago, when he went through a really bad patch and spent a couple of days drifting in and out of coherent consciousness with violent body spasms. He then improved again, but we just never knew if or when he might end up like that again. Over time he slowly got weaker and his speech became harder and harder to understand, but we all thought he might still have a few months left, it wasn't to be.
timarulad I’m sorry for your loss. My mother was diagnosed with MSA a few days ago. My mother was diagnosed with Parkinson’s Disease a few years ago. This video and knowing my mother is diagnosed with this horrible disease made me cry. 😥😥
In 2019 I was diagnosed with parkinson's and then in 2021 I was diagnosed with MSA-P. I've had symptoms since 2018 which progressed rapidly. I'm in a hospital bed now and can only sit up for about an hour at a time. I hurt everywhere all of the time. MSA is a horrible disease
My father's symptoms started with urinary retention in 2019. In 2021, he showed signs of ataxic gait and slightly slurred speech. In 2023, he had episodes of syncope leading to orthostatic hypotension. The doctors are still not sure whether it's MSA-C because the MRI doesn't show any hot cross bun sign. He is 56 years old and currently undergoing treatment at AIIMS, Delhi.
My dear mother has been recently diagnosed with this... it breaks my heart every day seeing her slowly die from this evil disease, also seeing doctors palming her off with different bullshit, NHS your day will come when all the jumped up over paid morons at the top will see the thick end of the wedge.
MSA is NOT a hormone imbalance. It is an a-sinuleinopathy. It has nothing to do with that. It originates in the brain and takes over your autonomic system.
With anyone who has family with this, please research alternatives. I would recommend Dr Joel Wallach's nutrition approach to reverse this disease and Dr Joe Dispenza with changing your mind to heal. Both have been through scientific scrutiny but are still early in development.
If it might give you hope, ii have had symptoms for over thirty years. I was diagnosed in 1998 and again in 2000. My primary care physician treats it symptom by symptom and that has kept my quality of life higher than most with this disease. The exhaustion of trying to be normal and out of bed is more and more exhausting. On bad days, of which there are more and more, I hide from people. Denial keeps me going as much as my meds. Life, however is precious and I too would like to see the other side of 100. If I can keep myself from giving up and staying in bed which is tempting, I am 69 coming January, in 1998 I was told I could hope for six more years. So push to have symptoms treated starting with the ones impacting you most, for me it was insomnia and coathanger pain, vertigo and super slow digestion, falling, and a few hundred nagging odd sensations, numbness too much to list. I function reasonably for about four hours a day. For the rest I have to settle for reclining and tv. Wishing everyone courage to keep fighting, and much love.
I'm a carer for a man with progressive supramolecular palsy, and when I asked him how he deals and copes with his illness he just replied one word, Acceptance. 💜
My loving mother has been diagnosed with MSA today. She was diagnosed with Parkinsons in 2016, and it only ever got worse. 3 DBS surgeries, countless therapies, and it has led us to this day. As I type this, I want to thank you for this video and channel as I have just discovered it. It has just been a giant wave of emotions today for my family and I, and I'm just glad there are some resources that can help us get started to help us care for her, and understand, to the best we can at his point.
Thank you for this movie. It's important to know you are not alone who has such situation.
My father has this terrible disease, the understanding, care, and professionalism around this disease is non existent, it has torn our family apart, a healthy hard working man turned into a bed and chair bound prisoner.. 😢 5 years after this video was posted...and still they have done nothing to help MSA patients, they still don't even know how you catch it.
this lovely sweet gentleman passed away 6 months after this was posted.
I lost my partner of 14 years just a month ago from MSA .
It was an awful disease . I was his 24/7 caregiver . He truly suffered . I miss him so very much .
My GORGEOUS HUSBAND who is 53 yrs old has MSA. Diagnosed August 2019. We are BEYOND DEVASTATED! I can't LIVE without Him. I am tied to this man by a million threads. I know the HOLY SPIRIT is comforting me, but this Pain is making it hard for me to Breathe. I LOVE YOU ANTHONY MOORE❤
Prayers for you and your beloved husband. Mercy and peace
I have been diagnosed with PSP
Dear Sena, same here. My gorgeous husband, the love of my life was diagnosed in 2019 at 54. I love him so much. I cannot live without him. They told us it was Parkinson's and they still do. but the symptoms just don't match and his progression is so fast. From going out for runs less than 18 months ago to not being able to out of bed without assistance... it-s just devastating. I pray that he and everyone will be healed. A miracle cure. An accidental discovery for all I care, but something will happen. I love him, I need him to be here.
My dad was diagnosed with MSA in 2008 but symptoms had started a year before that. He has been bed bound since 2014. If i most choose one advice to give, it would be do a colostomy whenever u can before it's too late. Cuz constipation was a very big issue for my dad since 2007( very common in MSA and PD).
5months ago my dad had to do it because of sigmoid volvulus ( left hemicolectomy). He has been much better since then. It should've been done before but no doctor ever agreed on that as a solution. What even worse is that one doctor even laughed at my face when I suggested this in 2010. My dad at that time was able to walk and talk. He was down for that too. It's sad we had to do it as an urgent operation. His overall health was poor . His lunges were very effected by general anesthesia. The operation table effected his back very much since he had to lay down for 4 hours. He has sever reduced bone density. He only weights 43kg.
Sometimes you wish you dont have to say this, some doctors are a**holes and dont really understand MSA and how important to reduce it's side effects even if it's too early.
Thank you so much for writing in and sharing your experiences and comments. As a rare disease, raising among medical professionals is only one piece of a large puzzle of tackling the disease, alongside gaining interest from researchers, connecting people to support, and more. However, it is very important and your point is valid: the more the doctors know about MSA the netter the care and management can be.
My dad succumbed from MSA just a month and a half ago (after first being officially diagnosed two years ago). He was only 65, and my heart breaks every time I think of the wonderful qualities he had that were taken away by that horrible condition.
I lost my father to this disease a little over a year ago. He was a larger than life individual that lit up a room whenever he entered it. To see what this did to him will always be hard for me to comprehend. I can only hope we bring more attention to MSA every day, and find a way to beat it!
MSA is horrible I lost my dad last year this disease it’s the worst I hope someone finds a cure it is something you don’t want anybody to go through, prayers to all of those who has a loved one battling with this disease
My mom died from this in 2014. She was diagnosed in 2007
. It was horrible to her slowly died because of this. Because she loved to have a control about all things.
Brings me to tears . I lost my mom 12 years ago to this horrible disease. The whole family felt so helpless ,like what your family is feeling . my thoughts and prayers go out to all of you. God bless
My dad was diagnosed with MSA two years ago. I agree, the whole family is hit with this terrible illness. Thank you for sharing your story. Bless you all.
Yes exactly
Thank You for sharing your story !!’
Thank you for posting something so personal and heartbreaking. I believe my uncle sent me this video because my auntie is going through this.
Someone I love dearly has just been diagnosed with this disease
I had never heard of
It’s just heartbreaking totally
heartbreaking
My 2nd cousin died of this. She was only in her 50's. She was a beautiful woman who loved to drive her custom purple Harley. May she always ride upstairs. Love ya Debbie ♡
Your comment got my attention because I'm 43 and diagnosed about a month ago and I ride a custom purple Harley, so I just wanted to say I'm sorry for ur loss.
May you live more than 💯..my prayers
Inspiring story - so sad - but the family looks so strong
I wish with all my heart that this illness will be fully recognised!!! I know and understand your heartbreak as I am living it now and I do not know which way to turn as there is no support!!! you are incredibly brave!!! xx
jago dragon 2008
You're right my friend. I'm living with this now and get no help at all.
Hi, we are sorry to hear that you are receiving no support. We have some support groups for people with MSA: www.psp.org/ineedsupport/supportgroups/
My husband was diagnosed as having Atypical Parkinsons in 2013 but he has since been diagnosed with MSA. It is awful to watch my beautiful husband slowly lose the abilities and skills that we take for granted. I miss his voice, his smile, his lovingly tight hugs.
Hi Debbie, my husband I believe has MSA. All the symptoms match him but the neurologist doesn't say it. Only about 2 times it was mentioned that it MIGHT be "atypical Parkinson's". I'm wondering why our dr. doesn't say MSA. It's seems obvious to me but I don't want it to be said infront of my husband. I'm thinking maybe I should call her and ask her directly what her opinion is.
He was initially diagnosed with Parkinson's July 26, 2019.
Thank you for sharing.. My father has MSA too and it has devastated my family as well..
Thank you Leticia, We are very sorry to hear of your terrible journey with your Father. We wish you all peace and strength.
I lost my father october 2016 from MSA this story made me cry. Thank you all for understanding. He was diagnosed january 2016. I watched him disappear. I could tell how awful it was for him and the pain he went through.
My father also has MSA too.
My heart goes out to you and your brave family.Your story is mine- My dear husband is nearly at the end of his MSA battle- a more horrifying and cruel disease you'd be hard pressed to find.
My dad was also diagnosed with msa :( it's really painful seeing their body giving up on them.
My dad was also diagnosed with msa :( it's really painful seeing their body giving up on them.
NO ONE UNDERSTANDS. NO HELP FOR US. WE ARE ALONE!
I have MSA and Is the hardest thing I’ve ever went through..lord have mercy…
My dad has just been diagnosed with this, he's only 59 and I'm 23. Hearing about people dieing from this is so sad because I really don't want to lose my best friend without him walking me down the isle and seeing my kids grow up (when I have them). Nobody seems to have anything positive to say and I'm losing hope.
There is hope Bethan. If you are based in the United States or the United Kingdom, ask your dad's neurologist about participation in Phase III clinical trials of Verdiperstat.
@@kylosun thanks for this information! We are based in the UK and emailed the MSA Trust, they say they don't know anything about the drug and all the information seems to be American. Is there any information you could share about UK trials please?
Hey, can you messge me on soemtbing? I’m 24 and my mum has this & I can’t get my head around it
My father died last week from MSA, finally cause of death was pneumonia caused by a lack of muscle strength to keep his lungs clear.
His symptoms started differently though, at first it was his blood pressure....he fainted quite a few times due to low pressure. He was initially diagnosed with "Failure of the autonomic nervous system", but later when he developed Parkinson like symptoms too, the MSA diagnoses was made.
We are so sorry for your loss. May he be in peace now. Thank you for writing in, we hope you continue to be here to offer comfort to others experiencing the same pain.
Thank you. If there is one thing we (the family) learnt along the way, it's how no-one can tell you how much time someone with MSA has left. We all thought my father was going to die 6 months ago, when he went through a really bad patch and spent a couple of days drifting in and out of coherent consciousness with violent body spasms. He then improved again, but we just never knew if or when he might end up like that again. Over time he slowly got weaker and his speech became harder and harder to understand, but we all thought he might still have a few months left, it wasn't to be.
It is truly a terrible disease, and only those who have witnessed it will understand the pain you have all gone through.
@@CurePSP i agree
timarulad I’m sorry for your loss. My mother was diagnosed with MSA a few days ago. My mother was diagnosed with Parkinson’s Disease a few years ago. This video and knowing my mother is diagnosed with this horrible disease made me cry. 😥😥
In 2019 I was diagnosed with parkinson's and then in 2021 I was diagnosed with MSA-P. I've had symptoms since 2018 which progressed rapidly. I'm in a hospital bed now and can only sit up for about an hour at a time. I hurt everywhere all of the time. MSA is a horrible disease
THank you for sharing I really did not have much information. Pray God,s Hand shall touch and and everyone. That is inflicted with horrendous disease.
Thank you
Please keep praying 🙏
My father's symptoms started with urinary retention in 2019.
In 2021, he showed signs of ataxic gait and slightly slurred speech.
In 2023, he had episodes of syncope leading to orthostatic hypotension.
The doctors are still not sure whether it's MSA-C because the MRI doesn't show any hot cross bun sign.
He is 56 years old and currently undergoing treatment at AIIMS, Delhi.
My dad was daignosed with msa and i feel hopless
My dear mother has been recently diagnosed with this... it breaks my heart every day seeing her slowly die from this evil disease, also seeing doctors palming her off with different bullshit, NHS your day will come when all the jumped up over paid morons at the top will see the thick end of the wedge.
Neurologists talk down to you. They get paid but don’t do their job. Iv been fobbed off by them. Yet my GP and consultant send me there!
Totally Agree!!!
Was his prostate removed prior? Am wondering if it related to hormone imbalance, or even inhalation of bio or noxious substances.
When my mom's menopause started, she coudn't write properly, she had balance problems too.
MSA is NOT a hormone imbalance. It is an a-sinuleinopathy. It has nothing to do with that. It originates in the brain and takes over your autonomic system.
With anyone who has family with this, please research alternatives. I would recommend Dr Joel Wallach's nutrition approach to reverse this disease and Dr Joe Dispenza with changing your mind to heal. Both have been through scientific scrutiny but are still early in development.
My mother is also suffering form MSA-c I am very disappointed... Can she survive 5 to 7 yr.
If it might give you hope, ii have had symptoms for over thirty years. I was diagnosed in 1998 and again in 2000. My primary care physician treats it symptom by symptom and that has kept my quality of life higher than most with this disease. The exhaustion of trying to be normal and out of bed is more and more exhausting. On bad days, of which there are more and more, I hide from people. Denial keeps me going as much as my meds. Life, however is precious and I too would like to see the other side of 100. If I can keep myself from giving up and staying in bed which is tempting, I am 69 coming January, in 1998 I was told I could hope for six more years. So push to have symptoms treated starting with the ones impacting you most, for me it was insomnia and coathanger pain, vertigo and super slow digestion, falling, and a few hundred nagging odd sensations, numbness too much to list. I function reasonably for about four hours a day. For the rest I have to settle for reclining and tv. Wishing everyone courage to keep fighting, and much love.
I am just 23 and all the msa symptoms started from the mid 21 and now doctor thinks that i might have it
I'm a carer for a man with progressive supramolecular palsy, and when I asked him how he deals and copes with his illness he just replied one word, Acceptance. 💜
@@magicmariobichon751 same 😭😭
I'm so sorry to hear it .
sending you all my love 😥😘😘🥰
Is this Motor Neurone Disease?
I think it can be from upper neuron legions you can read about the different between psp, cbd, and msa all are atypical Parkinson’s..
My father is suffering so horribly with this illness .
How is your father now?My sister died last week from psp.she lived with it 4 years
@@sarathsirimanna8964 my father died too from it ..sending love
My father also died last may :( he's been intubated for 6mos :(((((
I have a treatment