Tagged: AdaptingwithALS, Advocate ALS, ALS caregivers, ALS self care, fALS, SOD1
- This topic has 4 replies, 4 voices, and was last updated 7 months ago by Louis Savarese.
July 21, 2022 at 8:03 pm #22315AmandaKeymaster
We know that Self-Care is vital, especially for pALS and Caregivers. Self-care is essential for each of us, and if we don’t prioritize self-care for ourselves and our caregivers, how can we expect others to help us when we need support?
When focusing on how to build your self-care plan, it may help to consider the national Substance Abuse and Mental Health Services Administration’s (SAMHSA) 8 dimensions of wellness (SAMHSA pdf source.) Though developed by substance abuse professionals, these dimensions conceptualize the domains of wellness from a holistic perspective. These dimensions include:
The eight dimensions, if kept in healthy balance, generally predict higher levels of wellness.
What are your self-care goals and practices? What helps you the most? How do you feel afterward?
August 1, 2022 at 8:48 am #22425Kathleen B (Katie)Participant
Oh my…the self-care plan list is a juggling act of 8 huge concepts…and my 1st inclination as a person with ALS is to arrange them as a priority list to tackle—AND add one more: Grief Cycle. Here is ‘why’ that one belongs for ALS as a stand-alone (rather than just tucked into the Emotional concept: it truly permeates both pALS& cALS in a totally unique way. It is our ‘backpack’ perpetually—simply by the nature of the disease for which there is no effective treatment or cure—only an recently increasing set of ‘maybe getting closer’. That is WONDERFUL news for our younger relatives, friends, children & grandchildren—and my prayer that it WILL BE reality in their lifetime! But for the last 80 years of this disease & the foreseeable 5-10, self care plans need to start with managing the grieving process; followed by physical, social, emotional, spiritual, environmental, financial, intellectual & occupational. I do think the ‘balance’ of these toward ‘wellness’ will depend on the circumstances and situations each individual is in at the time the ALS diagnosis bombards their world.
August 2, 2022 at 11:01 am #22440AmandaKeymaster
Katie, you are so right!
August 15, 2022 at 5:05 pm #22511Dagmar MunnKeymaster
I have always loved the quote “Taking care of myself is not an act of indulgence, it is an act of self-preservation.” Especially now that I have ALS!
In my post “With ALS, Self-Care Isn’t Selfish, It’s Essential” I share tips and ideas that anyone can use.
August 17, 2022 at 9:03 am #22521Cindy CoxParticipant
My self-care plan as a caregiver to my husband tends to be ever changing, and changes fast. As the disease runs it course, my husband’s needs change and so then does my self-care plan! Several weeks ago I could leave our home and enjoy my ritual 2.5 mile walk each morning, but as his symptoms progress and he needs assistance more and more, I’ve had to forgo the walks in the morning. Right now being summer, it’s too hot out once he doesn’t need assistance and can manage on his own for an hour. The last time I went for a walk, as I got back and walked through the front door I heard him yelling for me needing to get up and onto the toilet, much earlier than normal, so it was a little traumatic for him and I. He was getting frantic with me not being right there and at his “beck and call”! Working outside in the yard, as part of my self-care plan is tough too. I tend to hover like a helicopter, in and out, checking on him, interrupting what I’m doing to ensure his needs are being met!
So as you can see, two examples of how I’ve had to change to adapt to ALS and it’s symptoms! Good thing I’m flexible, LOL!
August 19, 2022 at 8:57 am #22546Louis SavareseParticipant
My Plan is relying on faith. When newly diagnosed, I felt like a hypocrite in that I was always spiritual but my faith was on the back burner. I always knew the importance of every minute having lost my mother when she was just 35. Now that I have been on this journey for two years diagnosed and probably a year before, I have immersed myself is reading and seeing God’s creation all around me.
When I acknowledge the vastness and commonalities of our universe it cements my faith and with faith all is well. This life is but a blink of an eye, but he love we experience sets all things right.
It can’t say that I haven’t or won’t fall but in my heart I know that there is a loving God that has shown me the path. My prayer is that my family will find the same peace.
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