My father diagnosed with this desease

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GreenMechanic

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Hello everyone, my name is George, I'm 19 years old and I am from Greece. First of all I want to apologise for my bad english..:?:

A year ago, my father (63 years old) went to retirement but this last year he was feeling his hands weak, especially his right hand that he was using more at his work (mechanic). He thought that this problem occured due to fatigue. (30 years of hard work) Also the last months before he was retired, he faced some really bad problems with his job and he lost a really good friend, so his phycology was very bad.

Hopefully (after a difficult period when he lost 10kg) he went to the hospital and he made all the possible examinations. Nothing was found and all the results of the examinations were very good. During this time (1 month) his sister(my aunt) helped him very much because some of the doctors were her friends. Βut she did not tell us exactly what was his desease and the doctors said to my father that the reason of his desease was the stress...

So one day that I was searching on the internet(one month before), I realized that the Rilutek pills that he was taking for 3 months, are given to patients with this horrible desease! Firstly I was shocked and I was VERY VERY sad... :cry:I didn't tell anything to my familly and especially to my father because I did not want to upset them.

However, sometime we should talk because he must know the truth BUT I don't have the mental strength to speak about it. I think that at this time I have to tell my aunt that I know about this situation and then we will decide what to do...

I have to say that I feel blessed that I speak to this forum.

I hope all of you ALWAYS BE STRONG and never give up!
 

Alana

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Dear George, sorry to hear your news.
I can understand like you may as well, that in some old cultures keeping this news to oneself is what can happen. I know you are family and you are very young but your dad, bless him, is a proud man and he may not want to put his family through such stress! But yes I would ask the Aunt more questions and try to speak with his doctor. I do believe you have a right to know and find out more. Did he go to a doctor who has knowledge of ALS and did they get a confirmed diagnoses! He also may need a second opinion which is a relief in one way as you need to know for sure.
Please confide in a friend so that you are able to talk about this and he/she can be there for you and help you with some advice on how to approach the family members. You should not go through this alone, do you have siblings?
Be strong, find some real answers and kept positive. Praying for you and your family to come together.
Blessings Alana
 

Blondrea

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George, I am so sorry. You are always welcome here, and amongst friends. And your English is excellent. Welcome.
 

affected

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So sorry for this diagnosis.

I hope you can find a way to talk with them about it. Sometimes when people are first diagnosed they are in such shock themselves they need a little time before they feel ready to tell others. This may be where your dad is at. So don't push too hard, but maybe try to raise the conversation gently. It may help him to tell you.
 

GreenMechanic

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Alana, thank you for your answer and your support. I have a sister 2 years older than me. She is 21 but I haven't told her anything about all this.

My dad doesn't know about his desease and he thinks that it is a "blackout" because of the stress at the last period at his job. I see in his eyes that every day he is fighting and he hopes to get well again. At this time, he has a general weakness and the muscules at his hands are weaker than before, but still he doesn't have any disability. His neuro, is very experienced and she has a lot of knowledge but still I haven't meet her. At the next week I hope that I could meet with her and speak about this situation.
 

affected

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I'm confused - if he has been put on Rilutek how can he not be diagnosed and therefore know what he has? Are you saying his sister can make doctors lie to their patient?

Gosh I know this used to happen like 50 years ago here in Australia as it happened in my own family, but I didn't think this could happen today in any country. Also here, a person could not make an appointment with a doctor and ask to be told what is happening with another person - confidentiality.

Should you talk to his sister maybe and try to find out what really is happening as you must be doing some speculating here?
 

Janie H

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Welcome George, we are here for you.

Janie
 

GreenMechanic

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@affected thanks for your answers.

Well my father knows that he is faced with a neurological disease but he doesn't know exactly what is that disease. At first all of us we thought that the reason of this situation was the stress and the bad psychology. My family and my dad still believe in this but I know the truth.

My dad had told me several times to search on the Internet what may have caused this neurological disease, but all this time I hadn't found anything. So one day I accidentally found that Rilutek, one of the medicines that he takes, is given to people with this disease...My aunt suggested him this neuro and i'm sure that she told her not to tell my father the truth. This situation is really complicated and I feel a huge physiological pressure....First I have to speak with my aunt and then meet his neurologist as soon as possible...

Now my father had lost a high percentage of the mass of his muscles but he doesn't have any disability yet. His strength is lower than before but he still drive, eat by himself, walk, etc. Sometimes (here in Greece the temperature is very high this period, 30-35 Celsius) he is breathing with some difficulty when he is tired so a doctor gave him 2 sprays for his lungs and now he is a little better.

Thank you for your time and I hope always you will be strong!
 

Alana

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George do you still live at home? Do you have access to a large medical facility that indeed has a neuro team that deals only with ALS/MND? I ask this because if this doctor your father has seen didn't tell him exactly what he has then I would find another specialist for him to see.
I would think a doctor must tell his patient what his/her findings are. A doctor cannot give out any pills unless he/her is sure it's the correct medicine for the patient. I also don't think the Aunt can ask a qualified Doctor to keep the truth from a patient.

There is no real stage with this disease as everyone can have different onsets then another person. What kind of spray did the doctor give him? If his lungs are weak he should have them tested as he may need help with his breathing with a machine!

I hope you can get some answers soon and help from your sisters, you are young and scared and it's ok to have those feelings. My husband is only 54 with this disease and it's still very fresh and new to me. I'm scared myself as I don't know what's coming next, so take it one day at a time, love and cherish your father as much as you can.

Blessings Alana
 

affected

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George I'm truly disturbed if a neurologist in your country can collaborate with a family member and not give a diagnosis to their patient.

It is critical that he knows the diagnosis as there are so many things that 'a doctor' may prescribe, such as sprays that could be very detrimental. His breathing issues are muscular, not his lungs, so a spray may make him feel a little better at first, but actually could make things worse. What I mean is that if it makes him feel better he may breathe less deeply, and this causes more problems.

I hope you can get to the bottom of this. If you father has asked you to search on the net, can you go to him now and say you have done some searching and are worried and want to make an appointment with the neurologist and take him yourself so you can both discuss the diagnosis and ongoing management?

That would give you both a way to start dealing with the disease without any (possible) interference from your aunt.

I think it's awful that both your father and you are in this position.
 

GreenMechanic

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Tillie thank you for your help. Well, the diagnosis of his neurologist is als (translated in greek) but she didn't explain him exactly what are the symptoms of this disease, so he doesn't now anything about it (also my sister and my mother know nothing). The last month he has some sore throats and sometimes when he is tired (here in greece is summer and the temperature is very high), he faces some problems with his breathing. I'm not sure if it is caused by riluzole or it is a symptom of the disease.

After 15 days my father has a meeting with his neurologist so I will go with him to speak with her. I hope that she will speak clearly to me....

I appreciate your help, thank you very much Tillie...
 
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