Sophie's Search for a Cure - Multiple System Atrophy
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- Опубліковано 22 вер 2018
- "Sophie's Search for a Cure" chronicles one woman's personal journey with Multiple System Atrophy (MSA), an untreatable, fatal "Parkinson's-plus" disorder.
Searching for answers, Sophie becomes involved in fundraising for research and in raising awareness for MSA.
Through the journey, Sophie's spirit and joy of life touches all who encounter her.
Produced by Rainlight Films, Coloma, CA, with support, in part, from The Parkinson's Institute. Rights assigned to The Multiple System Atrophy Coalition.
I have been diagnosed with MSA-C ... is very sad that more than 25 years after her diagnosis almost nothing had changed ... no cure ... no treatment ... but I have made a decision ... to keep in my memory Sophie's smile ...
I am curious. What were your first symptoms? I have a lot of symptoms that overlap with MSA, but then I have others that seem not to. I also still have erections and orgasms after 2.5 years. The fatigue is tremendous, showering can knock me out for hours. I would like to hear the symptoms from someone who has been diagnosed.
@@DynamicUnreal My first symptoms was the lack of balance
@@moiogando My first symptom was flickering in my vision, then vertigo and headaches every once in a while, then I would wake up in the middle of the night with what felt like jolts of electricity and vibration passing through my body? Did you experience any of this?
So sorry to hear about Sophie. I went to high school with her, had no idea what happened to her until I ran across this video.
My condolences to everyone in her family.
Vince L.
My mum has msa 😣 I wish someone will find a cure and fast! They don't have a lot of time please God 😢
heres what i did
Beating Multiple Sytem Atrophy caused from Accute Toxic Phenol poisening w\ MMS .
photos.app.goo.gl/8b1yqAK2wbSXAWXx6
mmstestimonials.com
Where to buy bulk sodiumchloriteshop.com/sodium-chlorite-flake
mmsinfo.org/protocols/protocol_starting_procedure.pdf
Took me $ 20.00 bottle and 21 days to turn the disease .
The rest of what I used is in my comment section .
Do not be fooled about MMS by these charactors,www.thetruthaboutchlorinedioxide.com/hall-of-shame/
This is really a good video. I have suggested this to others to watch just to watch how devastating it really is. Since my diagnosis in 2016 I have gone down hill fast.
Thank you Austin. Your multiple system atrophy awareness efforts are very appreciated.
I can't thank you enough for sharing this heartfelt story.
My brother has also been diagnosed with MSA and this showed me the progression of this disease.
Like so many others I hadn't heard of this before.
This is beautifully, beautifully done. I cried. My husband of 24 years has MSA. He just had his 51st birthday. I am very scared of what this disease will bring to our future. I know God will lead me where I need to be to care for him. I know I must keep my health as strong as possible to be able to meet his needs. Thank you for making this video. It brought a level of understanding that nothing else has brought so far.
If I may ask, what symptoms does he have? My father is going on year 3. My father is 66 now and it is hard
@@gusorion8151 Hello. Sorry I just saw this. He has all the classic symptoms although they've come on slowly. He cannot walk without holding onto furniture or a wall -- for short walks without them, he looks like a toddler learning to walk. He has horrible sleep apnea and his breathing is no longer smooth. His speech is still understandable, but barely. He has blood pressure issues upon rising from lying or standing from sitting. His attitude is wonderful and we still laugh a lot, but I can see that his disease is progressing. Best wishes with your dad. It's a very hard and heartbreaking disease. My 21yo and 22yo are struggling with watching their dad decline.
Connie Barillas ugh it is a terrible disease :( now if you’d like, I would like to share some symptoms my dad has just in case they might help you in the future. One important thing is this disease makes the patient head move forward, try your best to have their neck straight up. If you can’t help them at a early stage the neck will be so badly bent forward their speech and the ability to eat will be difficult. Now blood pressure, does he feel like fainting when he stands up from a sitting position? Or are his feet swollen? If so please let me know! There are more things I would like to share just to help. If so you can reach
Hi, I am aware a long time has gone by, but if you would like to talk to somebody, I have had MSA for almost eleven years. I am 47 years old. I got Early onset MSA. Maybe I can tell you some useful things. Wish you all the best
@@tanschi8449 My husband was diagnosed with young onset Parkinsons in 2017 (he is 48). His condition progressed fairly rapidly. It started on the right side. It's starting to move to the left but not too extreme yet. But from 2017 to now, he has had to quit is job, he falls often, has difficulty eating, etc. A Duke neurologist diagnosed him with MSA. He wanted a 2nd opinion so he is being seen currently by a neurologist at a Veteran Affairs PD center. They are confused and basically said "i dont know if it's a bad case of Parkinsons or a mild case of MSA". He wants the brain surgery to have dopamine inserted continuously but they wont do it until they make a diagnosis because it wont work if he has MSA. We feel lost with what to do and what to expect.
Thank you for such a beautiful documentary on this disease.
That was very painful to watch. It shuttered my heart completely. My dad has it. We are on year 6 of the decease.
I’m 63 years old now, year 2022. I can relate to this story. I have MSA-C diagnosed December last year.
An hour before I watched this thorough and helpful video, my client was dx'd w/ this. This video helped me understand the disease entirely and how I can be helpful.
for your consideration , my story how i beta it.
Beating Multiple Sytem Atrophy caused from Accute Toxic Phenol poisening w\ MMS .
photos.app.goo.gl/8b1yqAK2wbSXAWXx6
mmstestimonials.com
Where to buy bulk sodiumchloriteshop.com/sodium-chlorite-flake
mmsinfo.org/protocols/protocol_starting_procedure.pdf
Took me $ 20.00 bottle and 21 days to turn the disease .
The rest of what I used is in my comment section .
Do not be fooled about MMS by these charactors,www.thetruthaboutchlorinedioxide.com/hall-of-shame/
My father had MSA, but it was not diagnosed at the time, the doctors said it was a psychological problem. Now my mother has MSA, which makes her doctor believe that something in their environment influenced this disease progress. They used to work with a kind of painting in which they had contact with many industrial products. My dad was 60 when symptons started. My mother was 71. And my 53 year-old brother has recently been diagnosed with Parkinson, which can probably be MSA, the doctor isn't sure yet. It seems that there are a combination of genetic and environmental factors to set going the disease.
Hudson Marques interesting! So sorry to hear this. My mother-in-law has been diagnosed with it.
Minha avó foi diagnosticada ontem. Teve diagnóstico de Parkinson por 2 anos, mas a medicação não ajudou a melhorar os sintomas. Ela costumava pintar porcelana quando era mais nova, seu comentário sobre seus pais trabalhando com tinta me chamou atenção... pode ser mesmo uma influência ambiental na manifestação da doença.
The person in my mind (as yet not diagnosed) worked in houseboat building as a very young person. Industrial products and paint involved.
It is heartbreaking I understand every single moment of this
My mother died this year from MSA and I'm devastated
My dad died 3 days ago on MSA type C also. Horrible disease. Euthanasia was the only way out.
I have MSA. Symptoms started in 1984. Loss of Balance and difficulty speaking.
I went to Cleveland Clinic having the first MRI and it didn't show anything and they just told me that I was a rare Bird and they didn't have any diagnosis .
I became really depressed.. Many years went by going to many Doctors with more Symptoms. They all told me that it was basically in my head.
I had 4 MRI and nothing showed up.
In 2005 I found my Hero my Neurologist Dr Thomas Guttuso. After being in his exam room he told me that I had a Movement disorder.I didn't realize that I was having symptoms of rigidity
I was elated because I finally found out that it wasn't in my head. My daughter was with me who is an RN. We hugged and I told Dr Guttuso thank you.
I have to use a walker because of my balance. i also choke and have difficulty swallowing, incontinence fall alot,,Getting up from sitting, , after falling I am unable to get myself up, difficulty turning in bed,, unable to walk very far so i have a transport chair that someone has to push me,Rigidity
My Rigidity is controlled with LOW DOSE NALTREXONE 4.5 MG . This is a compound drug. My right side of my body isn't rigid any more but my left arm is still rigid.
I told my Dr. that I could live with this.
No other medication has helped my MSA.
My speech got worse over the years and now I can't speak.
my son found a program that I could use to type and speak.
This was wonderful for me I use my I pad to communicate with everyone.
Dr Guttuso was very happy when I showed him my new way to communicate with everyone. he has given this information to many of his patients.
i use the Facebook and email people to keep in touch with many friends and family members.
I am incharge of My Class night out . We meet once a month I organize the get together message everyone. Make reservation through messenger..
My Class celebrated our 50th class Reunion this past July. I was on the organizing committee. We had over 250 people attended
i also stay active with my Grandchildren. I have 10 from the age of 25 through 4 and two great grandchildren. my grandchildren have never been embarrassed by my disease in fact the have introduced me to all of their friends.This is another reason that my doctor says that my disease is slow moving.
my husband is my caretaker we have been married for 47 years. He gets frustrated with me and i do with him.
He has had two heart attacks three stents put in has COPD Cancer in his right kidney which part of his kidney was removed and has been cancer free for 10 years.
He sill smokes which I hate but isn't allowed to smoke in our home
we moved to a 2 bedroom apartment it is on one floor. it is easier for me to keep clean, I still do all of the cooking.
I do belong to the MSA group and keep in touch with them through the Internet.
My Three children and their spouses are very supportive..
I have put all of my health issues in GODS HANDS,
I can't forget to mention that my Maternal grandmother had the same issues with Balance and choking not being able to speak. So we think that Ishe had the same thing as me. But back in the 1950 they just told her that it was her equilibrium.
We think that it skipped my mom and my daughter. Hopefully none of my granddaughters get MSA
I didn't mean to go on about me but once i start tellling my story i can't stop/
God Bless you all.
Judy Cirincione Newman
Hi Judy,
Thank you so, so much for sharing your story.
My mother has just been diagnosed (we think. Same story as you where nobody TRULY knows what is going on). It's hitting us all hard and a lot will have to be changed to make it work, but we'll make it work.
My mother loves her iPad too. She won't get off it. It's like when I was young and she'd yell out to me to get off my games, now the tides are surely changing :P but she'll be very relieved and happy to hear she'll be able to talk through her iPad. Maybe even too happy!
Thank you again for your comment on this page
Hii sir my dad also same problem in msp he is in middle stage plz any solution in msp plz sir..
Judy Newma
Q
Judy Newman ?
My dad has all the symptoms you have. It is hard, he had gotten diagnosed 1 year ago. Doctors need to see this. Because no doctor had a answer
Beautifully done. I have a friend with MSA. It’s devastating and sad to know there is no cure. Makes me feel helpless to help her.
This is just the way I'm feeling today (9/24/2020). My son's mother-in-law just found out Yesterday she has MSA after years of taking medication for Orthostatic Hypotension. She's been hospitalized before they ran all types of test and couldn't find anything. Why now. I'm so sad. I 'm unable to visit because COVID is still lingering around, The only thing I can do right now is pray for her. May God Bess you.
theres is help , this is what I did .
Beating Multiple Sytem Atrophy caused from Accute Toxic Phenol poisening w\ MMS .
photos.app.goo.gl/8b1yqAK2wbSXAWXx6
mmstestimonials.com
Where to buy bulk sodiumchloriteshop.com/sodium-chlorite-flake
mmsinfo.org/protocols/protocol_starting_procedure.pdf
Took me $ 20.00 bottle and 21 days to turn the disease .
The rest of what I used is in my comment section .
Do not be fooled about MMS by these charactors,www.thetruthaboutchlorinedioxide.com/hall-of-shame/
Nice to articulate words again ..
I have msa p it is a terrible disease I don.t know how long I still have here on earth
Thank you for sharing Sophie's story. My sister has been diagnosed with this disease. This will help us in helping her, and hopefully she will be feel the love as Sophie did
My wife was diagnosed with MSA 5 years ago although we knew something was wrong about 7 years ago. It is a horrible disease with no mercy. Does any deadly disease have mercy? My wife is the kindest, and most caring and loving person I have ever met. If she loses this battle, I will be lost forever. My prayer for her and for all those afflicted with MSA as well as their loved ones is that God in His infinite mercy, bring a so much needed cure. If, in his infinite wisdom no cure is forthcoming, then to comfort all concerned with the loving assurance of eternal happiness and peace.
...This disease is an absolute nightmare of epic proportions!!! ... We're struggling with eating food and drinking water, something terrible 😩 ... sometimes, she will choke, just trying to swallow, her own saliva... We're talking choking that sends her to the emergency room, multiple times per month!!!
i was full blown about to die .Heres how I beat it.
Beating Multiple Sytem Atrophy caused from Accute Toxic Phenol poisening w\ MMS .
photos.app.goo.gl/8b1yqAK2wbSXAWXx6
mmstestimonials.com
Where to buy bulk sodiumchloriteshop.com/sodium-chlorite-flake
mmsinfo.org/protocols/protocol_starting_procedure.pdf
Took me $ 20.00 bottle and 21 days to turn the disease .
The rest of what I used is in my comment section .
Do not be fooled about MMS by these charactors,www.thetruthaboutchlorinedioxide.com/hall-of-shame/
My mother has just passed away after a 7 year battle with MSA. She tried to take her own life several times and I wish she had been successful now as nobody should have been made to suffer the way she did in her final months.
My step father did such an amazing job of keeping her hydrated and fed with liquid foods that she surpassed doctors life expectancy estimated by months, but in the end she was like a skeleton. unfortunately the muscles that controlled her throat and swallow reflex barely worked and she must have felt like she was being waterboarded as she was unable to cough strongly and unable to swallow or turn so every common cold or illness that was brought to the house was torture for her.
In combination with the disease distonia is a common combination where all the muscles in the face tense showing the teeth in a grimace. she was given Botox injections to relax the muscles but it came with the risk she may choke if it effects her throat muscles.
my mother was 1 of 12 so had a constant flow of visitors between aunt's and cousins, my brother's and sister but even with their company it was never enough and she spent a lot of time in isolation during the days. I was not there as often as I could have been because I tried to ignore it, I'm both happy and regretful of this, but I had my own family to be with.
Now she's gone i would like to speak to her to tell her I love her
Euthanasia should be allowed to be offered at some stage of this disease while the ability to communicate is there before the suffering that I saw happened.
My deepest sympathies to anyone diagnosed with this disease.
How long does a patient live after diagnosed with msa -c ??
God bless Sophie and her family. She is now free and dancing among the angels once again. If her son is reading this, we are probably the same age. My dad had Multiple Sclerosis and had a similar disease experience. My mom now has MSA and is at the end stages of not being able to walk. I wonder why God cursed us with these hardships; maybe it’s not God at all doing this. I hope one day we are alive to know why this happened and stop these diseases
My husband passed seven months ago of the msa just after three months we could have diagnose of the case being sick with it for 7 years not knowing what to do with the defendant disorders of the evil method deseas.
May God help patients and their families
Why he was not diagnosed becuz msa patient have disability
My wife was just diagnosed with msa-c after 9 years of doctors and testing. It is now August 2022 . Diagnosed 2 weeks ago.
53:37 I’m just learning about this condition. Wasn’t this extremely early onset for Sophie? Such a tragic illness.
After many trails with no help, now searching for a Cure... One thing I'm sure of is, you may have never been to a Holistic wellness center. even once in a lifetime.
Holistic healthcare is life-saving health care.
over 20 years later, still no breakthrough, still no cure.. and limited treatment, all there is, is misery for the family and the sufferer, my father has MSA.
i thought that way to . its not true. heres how i beat it . i was full blown !
Beating Multiple Sytem Atrophy caused from Accute Toxic Phenol poisening w\ MMS .
photos.app.goo.gl/8b1yqAK2wbSXAWXx6
mmstestimonials.com
Where to buy bulk sodiumchloriteshop.com/sodium-chlorite-flake
mmsinfo.org/protocols/protocol_starting_procedure.pdf
Took me $ 20.00 bottle and 21 days to turn the disease .
The rest of what I used is in my comment section .
Do not be fooled about MMS by these charactors,www.thetruthaboutchlorinedioxide.com/hall-of-shame/
Only thing rockafeller indoctrinated drs will get you is dead. They left me in pain suffering wishing death on myself daily. never again !
@@FeelinCLO2 You can’t repair brain damage
@@biasedjedi4353 i'm doing it right now . I reverse autonomic nuerapothies no problemo.....alzheimerism and parkinsonisms too. Where do you come off telling me what I can and can't do ? Anyone can plainly see my recevory for those who choose to look. I was bigtime abnormal lol. I wish empthy and knowledge to you. Have a super day.. A comfortable day.........Noted..
Is there any cure, my sister in law suffering from msa. Please help. We can take her to america anywhere in world
Unfortunately no. I got a relative going though the same thing.
Hello my dad has celebral multi infarct with atrophy ....is there any suggestions to cure it???
I’m so sorry to hear that 😞. I haven’t heard of any cures, I’m sorry, but I hope you find something that will help. If I find something I’ll let you know. Take care. ♥️
i turned around full blown msa
Beating Multiple Sytem Atrophy caused from Accute Toxic Phenol poisening w\ MMS .
photos.app.goo.gl/8b1yqAK2wbSXAWXx6
mmstestimonials.com
Where to buy bulk sodiumchloriteshop.com/sodium-chlorite-flake
mmsinfo.org/protocols/protocol_starting_procedure.pdf
Took me $ 20.00 bottle and 21 days to turn the disease .
The rest of what I used is in my comment section .
Do not be fooled about MMS by these charactors,www.thetruthaboutchlorinedioxide.com/hall-of-shame/
@@FeelinCLO2 you need to stop posting unless you have information to help- Period
@@andrearheintgen8523 open your eyes. can't handle facts or what ? As long as people are suffering fro m.s.a. I will continue to post how ti beat it to help others. Stop trolling people who try to actually help others instead of cementing a death bed. Get some empathy ...its not my faulth doctors are indoctrinated by big pharma and only offer death . Hum 'This is how someone who beats the sickness is treated ? do you even have a heart that beats ? Do you often wihs death on people in your spare time ? Prove me worng why don't you ! All you got is lip . How do you sleep at night ?
@@FeelinCLO2 I must have misunderstood your post. I take care of my 54 year old twin sister who has msa cerebral + parkinson. I'm gutted and truly have the most empathy for you and anyone with this horrible disease. Please do forgive my statement because I truly misunderstood. I am very sorry.
My mama has this horrible disease
After a 5-year heroic battle my mother passed away last month from this disease.
Sophie searches for a cure
Google search dr Alan snow and Parkinson’s disease and Parkinson’s
entireweb.com search mms by jim humble. Don't use google , thats gaslight central !!! just search each and you can see what i'm talking about.
And alzheimers
this help my alzeimerism and parkinsinism . I was full blown msa. this stuff really smoothed out my tremors bigtime. My story
Beating Multiple Sytem Atrophy caused from Accute Toxic Phenol poisening w\ MMS .
photos.app.goo.gl/8b1yqAK2wbSXAWXx6
mmstestimonials.com
Where to buy bulk sodiumchloriteshop.com/sodium-chlorite-flake
mmsinfo.org/protocols/protocol_starting_procedure.pdf
Took me $ 20.00 bottle and 21 days to turn the disease .
The rest of what I used is in my comment section .
Do not be fooled about MMS by these charactors,www.thetruthaboutchlorinedioxide.com/hall-of-shame/