20 Months into "It"

Status
Not open for further replies.

Ken15

Active member
Joined
Jan 9, 2018
Messages
67
Reason
CALS
Diagnosis
09/2017
Country
US
State
SC
Twenty-months into “It”. “It” being a metaphor for the ALS experience. Twenty months seems like a fairly long time, but for this CALS it has gone by relatively quickly. I think the pace of change has something to do with it.

The shock of the initial diagnosis, traveling for 2nd (and 3rd) opinions, getting financial and medical affairs in order, communicating with and managing family expectations, digesting all of the information, incessant research on the web (looking for that one piece of information to give hope), going to clinic, participating in research studies and a clinical trial, understanding and anticipating the progression . . . living the progression!

Living the progression – that has been surreal. The almost instant change in how we live our lives and look at life itself; how priorities change, relationships change and life plans change. One day, we’re both on a typical retirement glide path and the next we are plunged into the ALS abyss. Of course, this is not unique to us; it is a characteristic for all who are members of “Club ALS”.

Living the progression – things are never static, for long. First, the loss of hand strength, then arms and legs/feet; an AFO for drop foot. Mobility - first a cane, then a walker, then a transport wheelchair, then a power wheelchair. In the bathroom – grab bars, a raised toilet seat with handles, a static shower chair – she can toilet and bathe herself – but, then she can’t; so, in comes a commode and shower chair on wheels, with cut outs for the caretaker to clean her private parts. At this point in the journey, the inability to dress, bathe, toilet, brush teeth, feed oneself and simply move from point A to B. All of this coupled with bouts of fatigue on a daily basis.

These “inabilities” eat at the moral fiber of the PALS and cascade over the CALS like a never-ending rain. But we persist, because we must. Our minds are intact; we have wonderful children and grandchildren, great neighbors and friends. We cherish the relatively brief episodes of mental and emotional joy, and use them as motivation to “carry on”.

The “It” journey is not over. We’re twenty months in, and breathing, speaking and swallowing are functional. There will be more “progression”. You might think that, by now, we’ve mastered the “progression experience”. Not so. It’s sorta like compound interest – each successive loss of functionality builds upon all the prior losses, exacerbating the impact. So, we will steel ourselves for the road ahead and do the best we can to make a go of it. We’ve definitely been blessed with excellent medical and emotional support – we don’t feel alone in all of this.

Thanks, for listening. Writing this has been somewhat therapeutic for me; I’m not sure it will be of value to anyone else.

Ken
 

ReginaS

Forum Supporter
Distinguished member
Joined
Nov 20, 2018
Messages
171
Reason
Lost a loved one
Diagnosis
02/2018
Country
US
State
LL
Thanks for writing this. I very much know what you mean. This has been my experience too.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,830
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
It’s sorta like compound interest
Ken, I hear you loud and clear. I was diagnosed about the same time as your wife. A different sequence of progression, but none the less, compound interest as you put it. It’s a strange path we’re on. My CALS and I refer to “adaptation of the moment”. I suppose that if one were to look at it objectively and without emotion, the problem-solving aspect is actually rather interesting. Unfortunately the emotional part is ever-present.

I wish you luck as you and your wife travel down this road. We’re right there with you.
 

Chuckdobro

Member
Joined
Apr 29, 2019
Messages
28
Reason
PALS
Diagnosis
02/2019
Country
US
State
Ohio
Ken, very well stated! How true the new life we are all living..........
 

Ken15

Active member
Joined
Jan 9, 2018
Messages
67
Reason
CALS
Diagnosis
09/2017
Country
US
State
SC
Unfortunately the emotional part is ever-present.
Thank-you, Karen.

In retrospect, I neglected to mention that the greatest stress-reducer of all time (yeah, I'm biased :)) is our 3.5 yr old black lab. She's there for us any time of day, with her calm demeanor and puppy-dog eyes. She takes turns sitting at our feet, always available for a pet, a wet nose smooch, and if either of us is lying down individually (she is not allowed on the bed when both of us are there), she's up on the bed, snuggled close with her head on our chest. No drug can compare!

Ken
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,523
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
North Carolina
Ken, I love the metaphor of compounded interest. It's so very, very true.

Our journey lasted 5 years, and change happened at varying rates. It seemed like the first two years sped by just as you described--research, participate, prepare the house, get affairs in order. I often wished we could just get it all in place so that we could LIVE some of the time we had left. Eventually we did.

My savior, once my husband was freed from the monster, has been our dog. I hesitated when Matt said he wanted a dog--more responsibility, I thought. I cautioned him to avoid Beagles if he wanted a dog to snuggle with him all day, but he fell in love with her at first sight. Beagle and Chow, she is as independent as they come, but so sweet and calm, and she gets me out of the house. She sleeps with me at night and spends her days outside, waiting patiently for me to join her. She does not come when called unless she wants to, so I have to coax her in with dinner, and she wants right back out as soon as it's done. When I do go out she follows me around the property; she refuses to come in when I enter the house, instead laying on the porch waiting for me to join her in the big world on the other side of that door.

This same independent dog went with me to a rehab center to visit my dad and stopped at every person in a wheelchair to let them pet her. What a blessing she is.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,824
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Becky, I'm a cat person, but she sounds like the perfect dog!

Best,
Laurie
 
Status
Not open for further replies.
Top