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Andy2020

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Joined
Jan 31, 2010
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84
Reason
PALS
Country
US
State
NE
City
Omaha
Hi everyone,

My Dad was just diagnosed with ALS on January 28th. :(

The neurologist had a terrible attitude and was rude to my Mom and sister. Not only were our lives turned upside down, but this Mayo Clinic "Specialist" was a jerk. They both asked questions and the Dr acted like they were idiots to be asking these questions. Very surreal.

When she walked us out she turned to my Dad and said, "Nice to meet you". She said it in kind of a monotone way. What a total lack of empathy.

I guess she is used to giving people this bad news or maybe it's a defense mechanism, but she was a terrible representative for the Mayo Clinic.


I realized very quickly we are on our own and then I found this forum. I am in the research stage and trying to learn all I can.

I will probably be hanging out in the research forum more right now, because reading all the stories of a loved one's decline is truelly heart breaking and at this point very hard to read. I don't want to picture my Dad in this way and I am truely hopeful that I will find some new treatments to help my Dad.

It is mind boggling to me the lack of knowledge the medical community has on ALS? :confused:

I pray for everyone that a cure is one day found.
 
Sorry about the diagnosis and bad attitude you encountered,there is no excuse for that. You are correct, there is a lot of ignorance out there regarding ALS.

BTW, welcome to the forum - sorry you have to be here.
 
Hi Andy2020,
Welcome to the forum.
Yes their is a lot of info here for you to check out.
If you have a question you cannot find an answer for, just ask

Sorry you family had a rough time at the clinic.

Cheers
Peter
 
Thanks for the greeting Joel and Peter!
 
Andy,

Welcome aboard!

I'm very sorry to hear about your dad's diagnosis and your encounter with the rude doc at the Mayo clinic.

Lots of polite folk here!

Zaphoon
 
Hi Andy... So sorry for this news for your Dad and your family. But it sounds like you a leaps and bounds ahead by realizing quickly that you and your family are on your own with this disease. I hate to be a pessimist about it because there are many who do seem to find caring doctors who are willing to really be there on the journey. But there are an equal number of us, perhaps more even, who realize that we have to navigate this on our own. You will have a quick learning curve and will encounter more attitudes like that Dr. (It infuriates me still too!). As soon as the words ALS leave their mouths they seem to just give up --- "here is the info, now pack up and go home..."

You have come to the right place.. there are truly amazing people here with incredible wisdom, not just about the disease, but about life.

Please do become a fierce warrior for information about treatment and research and please share what you learn. We are all in this together and are bonded in our commitment to our loved ones and our mutual hatred of the disease!
 
Hi Andy2020, Welcome to our forum. I am sorry to hear about your dad. I went through what you are going through, last September. Please know that all doctors are not the same. A lot can be very arrogant which is something I completely do not understand. It is to bad that the Mayo clinic has such a doctor working for them as well. You will need to keep looking. There are a lot of kind, compassionate doctors out there, but you have to look for one who specializes in ALS. There is not a whole lot of them out there because this disease is rare. (although I am guessing that more and more people will crop up with this disease in the future based on how society lives now...) I just posted a thread on how my dad is doing actually better since his diagnosis, if that helps. I know you will have to do all the research all yourself to try and get a handle on what you are dealing with, but what I posted was the way we came up with any type of fight against it through massive family research as well. Everyone is different and how they will react to any type of treatment will be different. If you have any questions or just need support, we are all here for you!
Hugs,
Blubear
 
Andy,

Welcome aboard!

I'm very sorry to hear about your dad's diagnosis and your encounter with the rude doc at the Mayo clinic.

Lots of polite folk here!

Zaphoon



Yes I agree with you Zaphoon. I'm glad I found this forum.
 
Hi Andy... So sorry for this news for your Dad and your family. But it sounds like you a leaps and bounds ahead by realizing quickly that you and your family are on your own with this disease. I hate to be a pessimist about it because there are many who do seem to find caring doctors who are willing to really be there on the journey. But there are an equal number of us, perhaps more even, who realize that we have to navigate this on our own. You will have a quick learning curve and will encounter more attitudes like that Dr. (It infuriates me still too!). As soon as the words ALS leave their mouths they seem to just give up --- "here is the info, now pack up and go home..."

You have come to the right place.. there are truly amazing people here with incredible wisdom, not just about the disease, but about life.

Please do become a fierce warrior for information about treatment and research and please share what you learn. We are all in this together and are bonded in our commitment to our loved ones and our mutual hatred of the disease!


Thanks mellorama.


I have been doing tons of research and will share what I learn when I feel more comfortable.
 
Hi Andy2020, Welcome to our forum. I am sorry to hear about your dad. I went through what you are going through, last September. Please know that all doctors are not the same. A lot can be very arrogant which is something I completely do not understand. It is to bad that the Mayo clinic has such a doctor working for them as well. You will need to keep looking. There are a lot of kind, compassionate doctors out there, but you have to look for one who specializes in ALS. There is not a whole lot of them out there because this disease is rare. (although I am guessing that more and more people will crop up with this disease in the future based on how society lives now...) I just posted a thread on how my dad is doing actually better since his diagnosis, if that helps. I know you will have to do all the research all yourself to try and get a handle on what you are dealing with, but what I posted was the way we came up with any type of fight against it through massive family research as well. Everyone is different and how they will react to any type of treatment will be different. If you have any questions or just need support, we are all here for you!
Hugs,
Blubear


Thanks Blubear.

Did your Dad do anything different after his diagnosis? Supplements, acupuncture, antibiotics?
 
Hi Andy, so sorry for what you and your dad and family are going through.I know that the first Nero that I saw told me to get a second opinion... I would be looking for a new Dr. right away. Lot's of folks here to help you....lots of knowledge in this forum... Linda
 
Hey Andy, Well he changed his diet to be all organic, stays away from MSG as much as possible, takes tons of supplements, sprays on magnesium everyday, got all the toxins out of the house like cleaners, laundry det, cologne, soaps and is using all organic there as well. He detox's now too. He went to the health food store and asked for a good detox package for someone with ALS and got a 7 day package. He has done 10 days and got the same effect as 7. Detoxing can be hard on the body so you have to be careful. He is 70 and used to work out 5 days a week, now he is at the gym 6 days a week. Since starting all of that he has actually gotten stronger and his speech is no longer slurred. His neuro was really surprised and said "What ever you are doing, keep doing it!" Its of course not a cure, but it is helping him fight it off, along with a good attitude and as little stress as possible. It is all hard work hun.
Hugs, Blu
 
hi andy, sorry you had to look for us but glad you landed here. just curious...what's the 2020 in your name?
 
Hi Andy...

I'm new to the forum. I'm so sorry to hear about your Dad and what you experienced at the clinic.

I too was diagnosed with ALS on 1/20/2010. I had a similar experience with a neurologist that I was referred to back in December. Without performing any extensive test (she basically tested my reflexes with a little hammer)...never even said "hello my name is Dr. ___"...she said to me "you probably have ALS which only gives you 2 to 5 years to live"! HOW DEVASTATING! While I had NO IDEA what was wrong (and why my speech was slurred)...that's how she approached me! Needless to say...I never went back to her again. It's not that i wanted someone to sugarcoat the situation, but I certainly expected more from a "PROFESSIONAL" when they are telling you about a life threatening disease! I did find another neurologist who performed extensive testing. I am trying to wrap my brain around this and get educated.

My main issue right now is informing close relatives and friends (it's not easy).
 
welcome shelley to our corner of cyberspace! sorry about your diagnosed. we are here to help with questions or just a shoulder to cry on. we get it.
 
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