I was diagnosed with Parkinson's Disease in 2012. Later in 2017 I was diagnosed with Multiple System Atrophy, but have done my best with the huge support from the Multiple System Atrophy Coalition to spread awareness of MSA through documentaries and while displaying the MSA Beast my 1970 Dodge Dart as a rolling billboard for MSA awareness.
@@RobdeKlerk-qg6lc my very 1st symptom was a tremor in my hands and blacking out when standing. It is extremely hard for an EMT-I to do an IV in the back of a rolling box going down the road.
My 75 year old father is some 80 % confirmed to have this, but parkinson's is most certainly a factor. Alot of the issues and symptoms line up and the last few years of history with him being at home seem to confirm a few things. He had hallucinations and weakness at home, would stop eating and drinking. eventually hospitalised with dehydration and such. Lost roughly half his Body weight in 6 months down to 54 kilos. Now has Postural hypotension so can't really walk far or stand long and has had several nasty falls (which new hospital 1000 % monitor now to ensure he doesn't fall again ) , bladder issues, REM disorder, sleep problems, but has been steadily improving the last 2 weeks at a new hospital. Have to tackle his depression, in order to get a Stomach endoscopy test done, to confirm if has had stomach cancer. Overall, his mental health has a good shot at recovery to a good extent, his physical issues are 50/50,
My sister was diagnosed with this disease ( MSA) this July only. she was advised by her neurologist that the only help they can do is to undergo physical therapy. I hope the symptoms will not worsen rapidly.
My name is David a Olsen. I was diagnosed in 2017 with Parkinson’s disease but lately I have the symptoms of PSP and MSA I don’t know which one I really have. Some days are good some days or not. I have balance problems lately falling backwards, or the tendency to fall backwards. Luckily I’ve been able to catch myself now I have high blood pressure I have swallowing problems I have droolingand I have very bad hand coordination. I don’t know which one I have nothing seems to be working. It’s getting a little worse each year is is there any way to find out which one I really have thank you for any help you can give me
Hi my name is Kathryn, im in Australia, i a as diagnosed with MSA in 2016. Life is getting a little harder these days . Things are progressing a lot quicker all of a sudden. I have been really good up to now but im noticing im startingv to get a lot slower, spelljng hard and my hand is starting to twitch a lot but my Neurologist cant believe im still walking, passing out is fun. My legs are ohaving trouble though now so i dont think it will be long. Til wheelchair bound. I have ALL these things that is being talked about . But ill keep fighting .
@1003nia thankyou , I feel I am doing so well as Neurologist said I should I ld have been in a wheelchair 2yrs ago and here I am. Still walking, not well but walking all the same. I appreciate your thoughts :)
Understand that you are doing the best you can with this condition. Along with PT and adequate sleep, there is also another "spiritual" way to release yourself from the anxiety and depression that so often accompanies MSA. One recommendation is to read Fr. Anthony De Mello SJ regarding Awareness. In fact, the book is called Awareness, and it focuses on living in the present moment and being fully aware of what is happening to us on the outside as well as on the inside. To be above what is happening by understanding its true nature. Can you or anyone be really happy with MSA? The answer is yes, which goes against everything we are taught. God bless and be well.
@TheDailyHayes thankyou so much, I am happy within myself, I you didn't have that what would be the point...I also have Chronic Lymphcytic Leukaemia (CLL) aswell as Chronic Obstructive Pulmonary Disease (COPD) and other things but what im trying to get at is, I have NO control over this, yes I fight it but NO, I'm not going to feel sorry for myself. I have my goals to make, my husbands 70th DONE ,my 50th Wedding Anniversary in which by the way he asked me to marry him again, so we renewed our vows with family & friends, next my 70th in two years...I'm going to get there too...after that I'll find something else...that's life, take it or leave it. You do what you can with what you are given, I've always believed there is someone worse off than me. Do I get my moments, ofcourse, I'm only human...but I've got to get on with it, and to the best of my ability with loving family and friends, that's what I'll do...I wish you and your family a happy , healthy, safe prosperous 2025...
@@kathrynkershaw3542 Thank you for taking the time to respond to my comment. Yes, of course, it is very good to have goals and things you would like to experience. To see your husband's 70th and your 50th wedding anniversary. You are dealing with a lot, and you are successfully doing so with much courage and determination. Every day we are given a chance to experience a reality transcending any physical and mental pain that is associated with sickness that allows us to live without suffering. What does that mean, to live in pain and yet not suffer? People have lived in pain and are happy and no longer suffer. May God's grace, the source of all healing and wellness, enter your soul, body and mind to liberate you from all suffering so that you may know God's eternal and unconditional love.
Ive noticedthat it hasnt been said about chronic indigestion/reflux. I often think I'm having a heart attack also when ilay down to go to sleep my heart pounds , i can almost hear if. I have to lie there and talk myself down to make it slower. My body in bed feels lie a thousand million ants ard runninv all oved it I sleep 4 hrs if I'm lucky 7usually I cramp up. I nod off during the day only for a minute the day while I'm in the middle of doing something, which is funny as I'll wake up because I've fallen out the chair or banged my head on the table 😅
I was diagnosed with Parkinson's Disease in 2012. Later in 2017 I was diagnosed with Multiple System Atrophy, but have done my best with the huge support from the Multiple System Atrophy Coalition to spread awareness of MSA through documentaries and while displaying the MSA Beast my 1970 Dodge Dart as a rolling billboard for MSA awareness.
What were your symptoms???
@@RobdeKlerk-qg6lc my very 1st symptom was a tremor in my hands and blacking out when standing. It is extremely hard for an EMT-I to do an IV in the back of a rolling box going down the road.
@FightingMSA good luck my friend...breathing problems as well ?
@@RobdeKlerk-qg6lc correct.
@@FightingMSA Thank...my friend
My 75 year old father is some 80 % confirmed to have this, but parkinson's is most certainly a factor.
Alot of the issues and symptoms line up and the last few years of history with him being at home seem to confirm a few things. He had hallucinations and weakness at home, would stop eating and drinking. eventually hospitalised with dehydration and such.
Lost roughly half his Body weight in 6 months down to 54 kilos. Now has Postural hypotension so can't really walk far or stand long and has had several nasty falls (which new hospital 1000 % monitor now to ensure he doesn't fall again ) , bladder issues, REM disorder, sleep problems, but has been steadily improving the last 2 weeks at a new hospital. Have to tackle his depression, in order to get a Stomach endoscopy test done, to confirm if has had stomach cancer.
Overall, his mental health has a good shot at recovery to a good extent, his physical issues are 50/50,
My father is suffering from MSA P. wishing for a cure for this disease.
Thank you for this! I learned the difference between MSA, PD, and PSP
My sister was diagnosed with this disease ( MSA) this July only. she was advised by her neurologist that the only help they can do is to undergo physical therapy. I hope the symptoms will not worsen rapidly.
My name is David a Olsen. I was diagnosed in 2017 with Parkinson’s disease but lately I have the symptoms of PSP and MSA I don’t know which one I really have. Some days are good some days or not. I have balance problems lately falling backwards, or the tendency to fall backwards. Luckily I’ve been able to catch myself now I have high blood pressure I have swallowing problems I have droolingand I have very bad hand coordination. I don’t know which one I have nothing seems to be working. It’s getting a little worse each year is is there any way to find out which one I really have thank you for any help you can give me
A neurologist who specializes in PSP and MSA
Guys I need advice on i always have constipation one week with hardened poop. .
Hi my name is Kathryn, im in Australia, i a as diagnosed with MSA in 2016. Life is getting a little harder these days . Things are progressing a lot quicker all of a sudden. I have been really good up to now but im noticing im startingv to get a lot slower, spelljng hard and my hand is starting to twitch a lot but my Neurologist cant believe im still walking, passing out is fun. My legs are ohaving trouble though now so i dont think it will be long. Til wheelchair bound. I have ALL these things that is being talked about . But ill keep fighting .
I pray to God to give you strength.
@1003nia thankyou , I feel I am doing so well as Neurologist said I should I ld have been in a wheelchair 2yrs ago and here I am. Still walking, not well but walking all the same. I appreciate your thoughts :)
Understand that you are doing the best you can with this condition. Along with PT and adequate sleep, there is also another "spiritual" way to release yourself from the anxiety and depression that so often accompanies MSA. One recommendation is to read Fr. Anthony De Mello SJ regarding Awareness. In fact, the book is called Awareness, and it focuses on living in the present moment and being fully aware of what is happening to us on the outside as well as on the inside. To be above what is happening by understanding its true nature. Can you or anyone be really happy with MSA? The answer is yes, which goes against everything we are taught. God bless and be well.
@TheDailyHayes thankyou so much, I am happy within myself, I you didn't have that what would be the point...I also have Chronic Lymphcytic Leukaemia (CLL) aswell as Chronic Obstructive Pulmonary Disease (COPD) and other things but what im trying to get at is, I have NO control over this, yes I fight it but NO, I'm not going to feel sorry for myself. I have my goals to make, my husbands 70th DONE ,my 50th Wedding Anniversary in which by the way he asked me to marry him again, so we renewed our vows with family & friends, next my 70th in two years...I'm going to get there too...after that I'll find something else...that's life, take it or leave it. You do what you can with what you are given, I've always believed there is someone worse off than me. Do I get my moments, ofcourse, I'm only human...but I've got to get on with it, and to the best of my ability with loving family and friends, that's what I'll do...I wish you and your family a happy , healthy, safe prosperous 2025...
@@kathrynkershaw3542 Thank you for taking the time to respond to my comment. Yes, of course, it is very good to have goals and things you would like to experience. To see your husband's 70th and your 50th wedding anniversary. You are dealing with a lot, and you are successfully doing so with much courage and determination. Every day we are given a chance to experience a reality transcending any physical and mental pain that is associated with sickness that allows us to live without suffering. What does that mean, to live in pain and yet not suffer? People have lived in pain and are happy and no longer suffer. May God's grace, the source of all healing and wellness, enter your soul, body and mind to liberate you from all suffering so that you may know God's eternal and unconditional love.
There's a pandemic of protein misfolding diseases.
@rosyc9250 . Interesting observation - care to elaborate further? Best regards 😊
Ive noticedthat it hasnt been said about chronic indigestion/reflux. I often think I'm having a heart attack also when ilay down to go to sleep my heart pounds , i can almost hear if. I have to lie there and talk myself down to make it slower. My body in bed feels lie a thousand million ants ard runninv all oved it I sleep 4 hrs if I'm lucky 7usually I cramp up. I nod off during the day only for a minute the day while I'm in the middle of doing something, which is funny as I'll wake up because I've fallen out the chair or banged my head on the table 😅