I think it's a great idea for everyone to share their stories of ALS and how it has impacted their lives. My name is Karin Michelussi and I'm 31 years old. Our mother has ALS and will be 60 years old next month. We're all still trying to come to terms with everything that has gone on.
She was diagnosed in April of 2001. Within two months, she was in a long-term care facility, as her condition was missed for a long time. Our father passed away at age 60 in November of 1999 from bowel cancer, and she attributed a lot of her physical decline to stress. She did seek a doctor's advice and saw a neurological specialist, and it was discovered that she had a fluid build-up in her head (hydrocephaly). It was thought that she could have a shunt installed that would relieve a lot of the pressure and therefore her symptoms. It was in April of 2001, while at Tara's house, that she started to have choking spells. The hospital there did an MRI and found that she has ALS, and that it was in advanced stages.
Because we didn't know until too late that it was ALS and not hydrocephaly (which she does have, on TOP of everything else), we had a hard time finding a placement for her. Currently, after a lot of work, she is in a long- term care hospital near my sister, Jan. She has a feeding tube and is almost completely paralyzed. She has been wheelchair-dependent for months. The most recent thing we're trying to cope with is respiratory failure.
I agree with the thought that humour can help you get through tough situations, but it's hard to find it. Our family has been dismantled in the worst way. We lost our father, our grandmother (age 80, Mom's mother) suffers from depression and panic attacks, and we ourselves are spread out (I live in the southern US, Jan in southern Ontario and Tara in Saskatchewan). We're all trying to do the best we can with what we have, but it's hard. I would like to say, Jan has amazed us. She has been a tremendous support and vocal advocate for our mother's care and has put her personal life on hold. Geography has made her the primary care giver for our mother and she is doing a wonderful job (and to give credit where it's due, she's taken control in a way that I don't know Tara or I would be capable of).
We all feel like we're living under a ticking time bomb now. Tara and I have three little kids each (she has 7,5, and 2, and I have 7, 4 and 1), and we're thousands of miles from Mom.
I guess there is light at the end of the tunnel. But right now, we all have this feeling of injustice and frustration and horror, that life isn't turning out the way it should have and that it just isn't fair. And envy … how come we have to lose BOTH parents to such horrible illnesses? It seems everywhere we look, our friends are complaining about their parents, debating whether to go visit them, planning trips for the holidays, inviting them to their kids' birthdays...
I'm sure Jan and Tara both have more to contribute and can offer better insight into what's going on. All three of us are strong people and try hard to see the good side of everything, and we're all fiercely loyal to each other. We would like to hear what everyone else is going through and are more than willing to talk about our own experiences.
Take care.
Karin
