Ken15
Active member
- Joined
- Jan 9, 2018
- Messages
- 76
- Reason
- Lost a loved one
- Diagnosis
- 09/2017
- Country
- US
- State
- SC
- City
- Hilton Head Island
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
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