[Kathleen B (Katie)]

I, too, am not ready to see movies about someone who has ALS…but I am just 8 months into being a pALS.   I am making a list as I see items mentioned…and I would like to watch these with my husband caregiver at some point…but not yet.   My 1st choice of ‘to come’ learning is having made the decision to re-read “Tuesdays with Morrie” (written by Mitch Albom).   I read it last some 35 years ago when I was going to college and it was assigned reading for a class.  ‘Morrie’ was a favorite college instructor of Mitch’s college days, a guy he admired and kept up with for years beyond college…and he writes about his visits with this friend upon learning of his ALS diagnosis and thru the journey.  I think ‘in print’ form I can handle things better at this point, and find it easier to share with those I love dearly, rather than seeing the visual reality.  (it’s the same reason I have not joined in any Zoom pALS meetings yet as well).    Best wishes to you Carolyn; & thanks Amanda for starting a new thread.

 

[Kathleen B (Katie)]

WOW! A very extensive list Richard—but VERY helpful. I’ve been going to a University ALS Clinic in Michigan (USA), since diagnosis in May 2021, which was:  Limb onset (left foot drop) Sporadic ALS @ age 65…none of 33 known genetic markers at all…likely an environmental toxic impact unique to my particular body system.
…not much peace of mind since trial of 2 months on Riluzole did not go well…so, ‘nothing else slows progression’.
However, I will use your list, and reach out to the ‘case manager’ assigned—now that I know it’s her job description to be the ‘point person’ for me on Q & A!
I am grateful for this Forums & other pALS sources, but it’s overwhelming to try & learn to help self AND live well and enjoy life—while trying to mange finding a ‘balance’ — literally & figuratively!

[Kathleen B (Katie)]

Lisa,

Thoughts & prayers for you, your daughter & grandchildren is what I can offer best…and I truly will do so.

I know the angst you describe regarding the body changes…and lifestyle changes…and the Neuro dr.’s ‘hedging’ (the most frustrating, unexpected piece)…tho’ I also cannot imagine how it would be to ‘go to work’ every day and know you have to tell someone such a mind-numbing diagnosis!  ):

I too have a couple grandkids–ages ‘nearly 4’ and just 4 months old–so I can relate to the stress of the caregiving role that is SO special, yet so draining!  However, I have figured out (since May/June), that if I try to ‘catch/do rest more’ on the days I am NOT with the little ones, it makes the time with them MUCH better–and the ‘nearly 4’ child LOVES to be my helper!  (Correct, I am leaving many things ‘un-done’ in my own home…which I am literally telling myself in a phrase, to do as a ‘stress reliever’–but I made that decision as my 1st step in ‘self-care’ and it did help my body actually!  (safety of self and grandkids was my motivation to be better rested…PLUS, I DID learn from a good nutritionist that keeping (quality) calories & proteins UP would also assist my body to help itself with muscle use needs, etc.  –AND, my primary care doc wrote me a script for PT, (even before I had a diagnosis, because I mentioned to her it looked to me like my left leg calf was smaller than the right leg calf, and my foot was ‘making noise’ when I was walking.   In short, a well trained PT  (watch for initials DPT, OMPT after the name, check out references?) can REALLY help with how to move and use the body more efficiently AND safely.   Hope you and the entirety of the situations can experience some peace of mind and heart in the coming days and weeks…

…Smiles to & from daughter and grandkids (or even to your own reflection in the mirror while saying “yeah, right!”) can be the spot of glow to remind that YOU matter SO MUCH to self and others!

 

 

[Kathleen B (Katie)]

I’m a recent Forums join–interested in the Virtual meeting idea too–best time for me is in the 10am-3pm time range– Eastern (Daylight savings) Time Zone of the United States.

[Kathleen B (Katie)]

Hi all,

I’m new to Forums, but got interested in ‘joining in’ because of some of the discussions.  I’m really new to ALS (2 months ago diagnosis)…but I do already have both AFO’s and a rollator walker.   I was not a fan of having or using either right away…but I was more frustrated with moving slow to be safe and avoid falls (due to foot drop issue).  So, some really insightful PT persons recognized that I wanted to be active and involved in what I like and want to do with my days and time (taking walks, gardening, shopping, play/help with grandkids), so they had me try both and see if they are ‘worth it’.  Indeed they can help!  (p.s. maybe get larger wheels on rollator if you are outdoors fan?–I did–its’ like the difference between a mountain bike and a racing bike for multi-surface use:)

Not totally easy, but –just like John S says, it keeps me upright and feeling like I still have a sense of ‘normal ability’ (despite the lack of weak foot, lower leg cooperation!).   I hope your PT and Dr. can support your need to be as mobile as possible…AND be as safe as possible, while conserving some energy.  (Katie)