ALS-LOU GHERIG'S HAS NOT CHANGED IN 38 YEARS

 My father-in-law Joe/Giuseppe died 38 years ago today from ALS.

He was diagnosed in 1967 and lived until Aug. 4 1974. 7 years.

First few years he shuffled then started to lose functions.

My mother-in-law Concetta worked fulltime and did his care before and after work.

Pureed his food the last few years of his life. 

A very debilitating disease.

Now people get feeding tubes, oxygen tubes but the end result is the same.

Sometimes there are suggestions of treatment. I was excited when MS was trying something new.

So as time goes on there is always hope that there will be a breakthrough.

Remember the bucket challenge a couple of years back that helped with funding treatment and research.

My heart goes out to anyone living with this condition today.

#ALS#lougeherig'sdisease#neurologicaldiseases#joediedaug41974#reflectivethoughtsbybarbara#barbaradimambro#alsadelibilitatingdisease#diseasetakesatollonpeople

THE ICE BUCKET CHALLENGE-SOOTHES THE SOUL

As many of you know my father-in-law died from ALS- Amyotrophic Lateral Sclerosis  40 years ago. It is a horrendous neurological condition that completely disables a person but one has one's faculties. The recent fun challenge that people are taking-pouring a bucket of ice water over their heads is fun. Then challenging someone else to do it too.  It is to bring awareness to ALS and then a donation is made to a local ALS Society. The media experts were analysing the current trend last night on TV. They were talking about marketing and how it has changed. Get over it! People do not want to be analysed. Something has touched people to do this because- well it feels good. Doesn't take much to do something that with the donation may make a difference in a person and family's lives.  I just find it very endearing that many people I know have taken the challenge. Even heard a neighbour last night challenging her brother before she had the water put over her head. With all the sad news and trouble spots of the world, the current phenomenon is uplifting and easy to do and fun! Love seeing the videos on Facebook. My son-in-law was challenged so he is going to take one for the team!! I had thought that my daughters and I could do it but Domi you are the family trooper!! Here's to the people suffering from this affliction and the families supporting them. Maybe with the surge of new donations, a researcher out there may come through with a breakthrough! We can always hope, can't we!!

A POSTCARD FROM CASSINO, ITALY

Cassino, Italy is the birthplace of my husband, Adolph ( Adolfo). He came with his family at age 9, June 29 1959 is when the landed in Canada. I have been to Cassino three times. Adolph has made more trips to visit family and to take care of the property there.

The handwritten postcards are from his mother- Mamma. After we were married in May 1971, she and my father-in-law Joe went to Cassino in August 1971 to transfer the land there to their two sons- Adolph and Tony. It was a difficult trip as Joe had ALS- Lou Gehrig's disease- which exacerbated during the trip.

Mamma wrote on one card- Cara Barbie-Abbiamo trovato tante accoglienza dai nostri parenti ma sono rimasta tanto delusa arrivederci presto. Love Mama.

To Adolph she wrote- Caro Adolfo- Spero che state bene, io non vedo l'ora di tornare con voi qui abbiamo avuto tanta accoglienza da tua zia e Pia e tutti sono stati, contenti cordialmente vi salutiamo. Mama.

Cassino is about an hour's drive from Rome- in the middle between Rome and Naples. It is famous for its Roman Bath- Teame Varroniane, Montecassino- the Monastery on the mountain, war cemeteries and some interesting Roman ruins at the base of the mountain. On my first trip there in 1991, I loved the piece of an old Roman road still exisiting. During World War Two, Cassino and the monastery was bombed to the ground and needed to be rebuilt. To have those Roman ruins saved seemed like such a miracle! Cassino Antica can been seen in one of the postcards. Adolph still has several cousins who live there. We keep in touch and throughout the years they have been very graciously hospitable to our family especially my children. Both girls have had holidays in Italy and have been so well received on several occasions. Vive Italia! Vive Cassino!

If you want a postcard featured here, email me at abdm@rogers.com and I will give you my address.

For comments, simply put your name in the profile section as I have finally changed my settings to allow this to happen.

THE WORDS WE SAY

Can create a memory for people. I was chatting with a young nurse who had returned from her maternity leave about a case where the patient had died that both of us had involvement. She remarked that my role as the Social Worker had been more important to the family. She only supported the patient. It made me think of a time in my life where the thoughtfulness of a nurse had made the difference. My father-in-law Joe had ALS- Lou Gherig's disease for 7 years. My mother-in-law, Concetta had cared for him while sustaining a fulltime job to support herself, spouse and mother-in-law. She cared for him doing the diapers when he was bedridden the last 3 years of his life. She pureed his food as the disease had atrophied his throat and he risked choking to death every time he ate. Many of her family and friends in my husband's Italian group were not the most supportive and often quite critical. Questions like- does your house stink from a family member wearing diapers did not actually help with the situation. At the end when he was hospitalized for the last day and a half of his life, it was while we were doing the death watch- that time when you stay with the loved one until the person passes away- that an amazing memory occur. It was two experienced nurses that were supporting us during the six hours. One nurse came in to turn Joe and noticed his body and skin. She looked at my mother-in-law saying did you provide this excellent care? I was 24 years old and knew nothing about skin care and how hard it was to keep the skin intact without sores or ulcers. Sometime later another nurse remarked about the same skin and how beautiful it was. In that short time two wonderful nurses provided more support and acknowledgement about the care Mama-Concetta had given her husband for 7 years than many other close family members. The small things we say and perform stay with the people we have contacted in our lives. If you think your small kindnesses do not count, well they do. My only regret to this day is not taking the names of those two nurses. For my mother-in-law it was the most validating moments. Professionals who understood the love and care she had given. I told this story to my young colleague stating the patient and family we supported that day through their death watch will always remember the care she gave. Do you have a memory of a professional being there for you when you needed him or her? Was someone nasty and you remember the negativity? For the professionals who read this blog, do you have a story to tell?