Hi, I'm from portugal with a daughter with ALS

[T.Almeida]

Hi, I'm from portugal and my daughter has ALS

Dear All,

I am new on this site. I am not canadian. I live in Portugal and i am the daughter of an ALS patient diagnosed in December'02. In Portugal we don't have any association or help regarding this specific disease. Nobody knows about ALS and close relatives and neighbours just stare at us when we tell them what is going on.
My father (62 y) presents a strong progression. In just 7 months he lost the ability to walk, talk and use his hands. He is now totally dependent of my mother who acts as a caregiver.
The last months have been like a nightmare, has we do not have anyone with us to help or advice. However we are working hard on making his days soften then they really are . We are daily facing new difficulties but fortunately we have been able to overcome them all, slowly and step by step.
The hardest is when we try to go out. People are not used to deal with this kind of handicaped people in this country. We are looked in a curious way. Also we do not have the right accessibility for the disabled. However we do not give up on getting my father to look at the sea he loves so much or to have a wheelchair walk in a garden.
We have learned a lot about love and care during the last months. We are now much closer than ever and we try to be always in a good mood. We deal with anger and we turn it into affection.
I would like to send you all a word of hope. My thoughts are with all who are suffering of ALS and also with their families and caregivers.
Teresa

 

[buddylou]

ALS

I am so sorry to hear of your dads sickness. My husbands grandmother was diagnosed a year ago also at the age of 73. There is no easy way to deal with something like this and it really does not matter where we live because it is such a complicated disease without alot of answers. Your dad sounds so lucky to have you guys in his life and living the moments with him are the most important things in all your lives. Nan (we all call her that) was playing cards with her friends when all of the sudden she had trouble getting her words out and swallowing and ever since then she has a harder time every week. At this time, we have been going to drs once or more a week. Her legs are bothering her around her thighs but other than that she is so independant. We came home last week with a computer which talks for her and surprisingly she has been catching onto the keyboard quite well. Watching a person who was so independant starting to depend on others is really a sad thing to cope with because her mind is always going to be the same and it hurts so much watching this disease progress, if only there was a cure! My heart goes out to you and your family we are dealing with the same thing, it is terrible.

 

[buddylou]

Re:

Hi again: Wow, that is sad! Just got home from the physiothereapist this afternoon and she is now advising nan to starat using a cane. Nan started from the throat, not being able to speak or swallow very well and now it is starting to progress more into her limbs. I can see how much it is progressing each day now, they had spoken to us about her geting the feeding tube. They say that it is better to get this before she gets too bad and can't swallow anything at all. The real hard thing is that I am the one taking her back and forth to the appointments and she is very secretive about the whole disease and she would rather not tell anyone else in the family about the things the doctors are speaking about nor does she let anyone tell other people in the community about what is wrong with her. Oh well, I guess that is the least of the problem here, how progressed is your dad? Nan has gone in 1 year from 164 lbs. to 119 lbs. She is now trying to plumpen herself up with skim milk powder, whole milk, and other fattening dairy products.
Take Care Paula( Buddylou) [quote:f67f4977fb="Anonymous"]Its true all that you said about your grandmother's husband. One of the worst things about this disease is when it is diagnosed in someone that loves life.

My parents have bought a new house just 6 months before my father was diagnosed with ALS. At the age of 62 they were planning a new life in a new city near the sea. They have made so many plans, and that hurts a lot. They have now moved to their new house, but they are suffering because their dreams have turned into nightmares.

All our lives have changed because of this terrible disease. One of my fathers desire was to be a grandfather. As my husband and I were planning to have a child by the beggining of 2004, I am now 2 months pregnant. I know that at this advanced stage of the disease, my father won't live enought to met the child, but he his so happy about it, that this is just the reward I need to balance all the suffering I am dealing with.

When we deal with a devastating disease we have to be strong, and believe we can be stronger than we imagine and we can endure suffering in a way we can't even imagine before. Just because we love our family and those who are in pain.

All the best for your family.[/quote:f67f4977fb]