Mari Carmen’s story: “I advise family unity when supporting a loved one who has ALS”

Mari Carmen is the older sister of patient Juan Manuel, she takes care of her brother, along with his wife. He was diagnosed with ALS in February 2020 and since then he has followed a clinical trial that includes Ketas (Ibudilast) which is not yet approved in Spain, where Juan Manuel lives. We at everyone.org are glad to have been able to deliver this medicine to Juan Manuel on the Named Patient basis.

Mari Carmen has graciously agreed to share her and Juan Manuel’s story with us.

Can you tell the readers a little about your brother's diagnosis?

Around 2019, my brother started to feel strange. At first, he notices how he lost his memory; for example, he couldn’t remember important dates. This was not a regular occurrence for him, that’s why he went to the doctor straight away to find out what was happening. At first, they told him that it was only stress, so for a while he believed that was the cause.

Later, he began to lose his strength, his hands started to fail him (first it was the right hand and then the left), and he felt tired all the time; this is rare for my brother because he works in construction, he was used to lifting heavy weights, like bags of cement. He was also very active, a person who was always doing something, so these symptoms were worrisome.

He goes back to the doctor, who this time observes something strange in his hands; for that reason, he was referred to a neurologist at the “San Sebastián” hospital, where they conducted different tests without telling us what they were for or what illness they suspected. In February, after several months of analysis, my brother went to the practice and was diagnosed with ALS. The doctor asked us if my brother wanted to participate in a clinical trial, which involves taking various medications, including Ketas (ibudilast). It was the doctor who recommended your website to access this medicine.

We soon realised that the disease was progressing very fast. He started the treatment in April 2020, and in October 2020 he could not have a shower alone, he could hardly eat, things were falling out of his hands. In addition to all this, in September 2020, he was diagnosed with temporary dementia.

How did you find out about us?

Dr. Adolfo Lopez de Munai, who is my brother's neurologist, gave us your email. He was the one who included him in this new clinical trial.

You have helped me in Spanish from the first moment and have been very kind to us, besides, the medicines have always arrived on time and without any problem.

How is a day in the life of your brother?

He gets out of bed by himself. My sister-in-law helps him to shower and dress. As he is now in his retirement home, he likes to go out to the garden and hunt moles all day. As he is isolated and does not want to see anyone, the family takes turns visiting him and helping his wife. My brother sometimes takes the medicine alone and sometimes needs help, likewise with food. At 10 in the evening he is already very tired, so he goes to bed.

How has COVID-19 affected your brother's life?

As he is isolated in his retirement home, it has not affected him. However, it has affected us -the family- especially to be able to leave our house and visit him. On the good side, the doctor gave us a photocopy of his medical report, and the ADELA foundation supported us by giving us a pass; with this, we have been able to go out and continue visiting him [during Covid lockdowns in Spain].

Do any Spanish associations help reimburse the cost of medicines?

No, my brother and his wife pay for all his medications. The only help that we have is with the ADELA Foundation, who let us borrow medical devices, such as a wheelchair, medical bed, and provide us with a physiotherapist. They also give us psychological care. There we can meet patients and relatives who are going through the same situation as us.

What would you like to say to a patient with ALS who is reading your brother's story?

Psychologically, it is exhausting for the family and caregivers. It is very difficult to have to put one face in front of my brother and when we get home another. I am grateful to you (everyone.org) because you have helped us from the beginning.

Is there something you would like to mention to the world about what it is like to support an ALS patient?

I advise unity to the family because it is a very hard and devastating process, for the patient and the family members as well.

I wish that more money would be invested to study ALS.