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Snowbird

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Joined
Oct 7, 2004
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I have read some of the posts re. diagnosis of ALS/MND. Jack had undergone all kids of tests for 2 1/2 yrs before he got his final diagnosis of ALS. The neurologists were reluctant to call it ALS because he had no bulbar involvement, right to the end. However, it was the ALS Clinic at Deer Lodge Hospital in Winnipeg that gave him the final diagnosis last April.

It was recommended that he get a stomch tube in place ASAP and also not eat solid foods. Quality of life was important, and Jack hated the mush. The end outcome was that our doctor let Jack do whatever he wanted to do, and eat whatever he wanted to eat. He tried the mush and the tube, and didn't like either. So he returned to normal eating knowing full well the consequences. He was much happier, as he always liked his food. Sometimes I would take him to the drive-in in his wheelchair and we would share a hamburger or a piece of chicken.

Anyway, getting Jack out & about the community made people feel more at ease with seeing him. They realized that he was still the same Jack and had a very sharp mind. He talked to everyone, and seldom about his disease. Good friends would visit him often and talk about anything & everything. People who would not visit were usually frightened of what they might see and did not feel they could accept it. That is okay, because we knew that they still cared. Everyone has a different acceptance level.

As a caregiver and a wife I felt it was very important to get Jack out & about the community. Besides our wheelchair walks, he also went to socials, Kinsmen anniversary party, the golf course for breakfast or lunch, croptours, visiting the campground, other public functions, etc. It meant so much to him and also to his friends. They found out that it was not so frightening after all.

Jack's illness has had some very positive effects on our community. e.g. parents are now spending more time with their families, booking more vacations, etc. Some people are taking semi-retirements earlier than planned so that they can do things as a couple. Some are buying RV's and plan to spend a few months in the south.

It is sad that Jack was a victim to this disease, but even the nurses have commented on how much Jack taught them. He had a wealth of knowledge and was always willing to share, along with giving the nurses a hard time of course. He never complained about his disease and became very open about asking the nurses for anything that would help with his comfort level. Everyone was so proud of Jack's spirit.

We also received some huge manuals from the ALS Society in MB, and they were at the nurses' desk. At night, the nurses had more time and would read through the manuals. Public awareness is very important with ALS. ALS is not something to fear. It is something that we learn to live with, and live WELL with, as a community. All the people need is a leader, and as family and caregivers, we can all be leaders.

As usual, more than my 2 cents worth,

Pat
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
No one here minds more than 2 cents worth as long as you're not 2 cents short of a loonie. You write with wisdom and the love is evident in your writing. Feel free to put in your take on things at any time. I am sure that others as well as myself feel a bit inspired. Thanks for being here. Al.
 
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