Recent content by Belen

Mar was beautiful, kind, generous, and a fighter. Eight years fighting, not for herself, but for her loved ones. I hope that, wherever she is, luck is more on her side this time. Peace, my darling, I miss you. ❤️

Hi, Nikki. Apparently the palliative doctors visited today again and said they would be back tomorrow to reassess. We will see what they say. I will probably get word as I am getting ready to travel to Madrid on Monday afternoon from the West Coast. I will arrive there Tuesday afternoon local...

Laurie, and NinjaLady, thank you for replying. My sister is in Spain, while I am here, so I am receiving information through my sister in law, my nephew, and my brother, who are there with her. The big oxygen drop happened on Wednesday. I don't know how low the drop was. Yesterday she had...

My sister (diagnosed 7 years ago, bedridden, tube fed, ventilated, communication system) had an oxygen drop a couple of days ago. Doctors said there may have been irreversible damage. She has not responded to stimulation since. The fever has gone down just today. Her medical care directive...

Sure! If there is anybody with local knowledge of ALS in Madrid, Spain, that would be great! I am only trying to help in the very limited way that I can from afar. It is pretty frustrating not being able to be there myself.

I will suggest a rolling mount. My sister is not in the US, but I think it's a good idea to contact her local ALS association.

I believe you may be onto something regarding responsibilities. I will contact the orthopedist to see what is going on.

One of the concerns with the ceiling installation is that they can't find the right brackets. The horizontal bar system apparently interferes with the system used to get her in and out of bed. I am sure there are other solutions. I just don't understand why the O.T, Speech therapist and the...

She spends most of her day in bed. When I was visiting, she felt with enough energy to get up and onto her wheelchair so that we could go out for walks. After a couple of hours, she was ready to get back to bed. She has a power chair but I don't think it has tilting. I don't have the details...

I posted over a month ago and got very helpful advice. I wanted to thank all who replied once again. I spent a wonderful week with my sister. I have to admit there were tears but there was also a lot of laughter. My sister's spirits lifted and we went out for a walk every day to her favorite...

Thank you so much for your reply. I will check out the site you recommend. My sister is not an English speaker. Do you know if it supports other languages?

Thank you so much for your advice. Yes, that's a great idea. I have been sending her tons of pictures and videos throughout these years as a way to keep in touch. Thank god for the Internet! We have a good collection to look back on. I would like to be able to bring a little gift for her. Do you...

Hi. I am new here. My sister was diagnosed in 2011. She has been in a nursing home for the last three years. We live 6,000 miles apart. The last time I was able to visit was four years (and one college kid expenses) ago. The nursing home is very good and paid for by her disability pension...