ALS does not discriminate

We are pensioners in our 60s and raising our great grandson

Mike and Nadine Sands are chronicling his experiences with ALS in a blog.

Editor, The News:

Re: Sands of time, a chronicle of courage (The News, Oct. 28).

Mike and Nadine Sands, your blog hits the spot.

My husband had a confirmation diagnosis of ALS in June. There is something to be said for naming what is happening in your body, the unexplained is nerve racking.

We are pensioners in our 60s and raising our great grandson. ALS does not discriminate.

ALS is like having an unwanted house guest. It seems to take over every bit of your life – your family, your home, and any other thing that you hold dear, especially dreams of things yet to enjoy.

Each day brings on new challenges and as my husband says, “what is going to work today?”

Each day is full of thanks and joy because he has had another day of mobility and independence.

This joy is mixed with the harsh realities to deal with.

For most husbands and wives, it’s the fine line of partners versus caregiver and patient. Your team is operating on less energy and less strength to deal with changing needs. You, the mate, are watching your loved one lose dexterity, muscle mass, and control of body movement. There is no joy in that.

The joy comes from whatever independency can be exercised that day, like overcoming ALS or kicking it to the curb for that moment.

To each day lived by faith, we add humor.

Although  having ALS is nothing to laugh about, laughter is still the best medicine.

Like when the social worker reminds you that going out for groceries is not getting away, or looking after you the caregiver.

I’m laughing as I slowly wander through the grocery store. The maneuvering around the safety equipment in the bathroom has become quite laughable. My son thinks it’s a jungle gym; I try to look at it as the new aluminum collection to enhance the decor. Either way, it is out to get me, I’m sure.

We are very grateful the team at the ALS clinic in Vancouver, the community workers and the ALS society. All are very helpful with support, resources, and quick response to questions and concerns.

More importantly, we live in a country with medical coverage and PharmaCare, each are essential when you have such a devastating disease and have a limited pension.

Our family and friends provide a super network of support and assistance. Learning to ask for that assistance is an art itself. That’s something ALS insists that you learn.

You do need assistance and you can ask for it.

People want to do something; they can’t cure you or make you better, but they do want to help.

So make a list of things that they could do to lighten your load of the mundane so you have more energy to deal with the realities of having ALS – like mowing the lawn, washing the car, housekeeping, paying bills, going out for coffee, dropping off a casserole.

It really is the simplest gestures that make the biggest impact.

I don’t know which is harder – asking for assistance, or accepting that you need it to help you get through the maze of your present reality.

That goes for both the patient and the caregiver.

To you and all who are living with a terminal disease, may you have peace and find joy in all things.

Now I think I will go off and see about creating my own blog.

Louise Shmidt

Maple Ridge

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