ALS News Today Forums | Mary Tiknis | Activity https://alsnewstoday.com/forums/members/mtiknis/activity/ Activity feed for Mary Tiknis. Fri, 17 Apr 2026 12:44:30 -0500 https://buddypress.org/?v=2.19.0 en-US 30 hourly 2 5f6aaf143bc9952c578196900e788b34 Mary Tiknis replied to the discussion Have you changed your diet since being diagnosed with ALS? in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/have-you-changed-your-diet-since-being-diagnosed-with-als/#post-20767 Fri, 15 Oct 2021 12:27:16 -0500 Reply to Have you changed your diet since being diagnosed with ALS?

I have no appetite I was trying to force myself to eat but I wasn’t getting enough calories I was losing weight now I have a feeling through and take Jevity three times a day I still try to eat a little bit here and there but it is a good thing that I’m getting enough calories now

]]> 8011eccbb3bea3895fd0826c4a6b5b13 Mary Tiknis replied to the discussion A message from one of your Moderators in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/a-message-from-one-of-your-moderators/#post-20333 Wed, 25 Aug 2021 11:38:24 -0500 Reply to A message from one of your Moderators

I am grateful for my family and friends.

I am grateful for the ALS clinic

I am grateful for the foundations that help us get what we need to live a better life.

I am grateful for ALS news today for encouragement and feeling connected to others going through this awful disease.

Mary Ann Tiknis

]]> b05e03ab163f100ac0a9d4043ba9e2dc Mary Tiknis replied to the discussion Delta in the forum COVID-19 and ALS https://alsnewstoday.com/forums/forums/topic/delta/#post-20092 Fri, 30 Jul 2021 13:09:45 -0500 Reply to Delta

I am considering me masking again when insideI am fully vaccinated but with this filter strain I think we should take more precautions

]]> f4b56fee711a7b35b410bc893df139b5 Mary Tiknis replied to the discussion Check in on Summer in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/check-in-on-summer-4/#post-20091 Fri, 30 Jul 2021 13:07:56 -0500 Reply to Check in on Summer

I got to go to the beach with my children and grandchildren the lifeguards rolled me on the beach with the sand wheelchair I also got to go to Summerfest three times which is a live band many people from my town and lots of food trucks and it ends up with fireworksI am very grateful that my children take me

]]> 913e02dde15abb10aef5329e2b5bfd05 Mary Tiknis replied to the discussion A brand-new sub-forum: Let's discuss mobility, technology and medical equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment https://alsnewstoday.com/forums/forums/topic/a-brand-new-sub-forum-lets-discuss-mobility-technology-and-medical-equipment/#post-20090 Fri, 30 Jul 2021 13:05:27 -0500 Reply to A brand-new sub-forum: Let's discuss mobility, technology and medical equipment

I have found that the higher walkers that keep you up right do not work outside every bump  that you encounter makes the upright walker tip I like the lower Rollator is much more convenient and it doesn’t tip when you’re walking outside

]]> 7dd110d32778a143e5f5ac742629ba18 Mary Tiknis replied to the discussion AFOs: Are they worth it? in the forum Mobility Aides, Assistive Technology and Medical Equipment https://alsnewstoday.com/forums/forums/topic/afos-are-they-worth-it/#post-19975 Wed, 21 Jul 2021 12:14:54 -0500 Reply to AFOs: Are they worth it?

My AFO are very helpful when I Am walking with my rollator . Without then I have a harder time walking due to foot drop. The metal  ones are better.

]]> fbc03f04aef00f57ef717eb9de1c8230 Mary Tiknis replied to the discussion Winter, Spring, Summer or Fall in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/winter-spring-summer-or-fall/#post-19861 Sat, 10 Jul 2021 15:37:01 -0500 Reply to Winter, Spring, Summer or Fall

I cannot tolerate the heat. I like the temp outside to be-in the 70’s with little humidity

]]> 453c2270cea56b516ebe93fed50f795a Mary Tiknis replied to the discussion New study shows ALS/MND damage to nerve cells can be repaired by improving the energy levels in mitochondria in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/new-study-shows-als-mnd-damage-to-nerve-cells-can-be-repaired-by-improving-the-energy-levels-in-mitochondria/#post-17633 Tue, 02 Feb 2021 23:16:56 -0600 Reply to New study shows ALS/MND damage to nerve cells can be repaired by improving the energy levels in mitochondria

I have read that Acetyl-L-Carnitene a supplement involves mitochondrial function and energy production. Studies suggest that it may be beneficial for people with neurodegenerative diseases

Mary Ann Tiknis

]]> 45f3923f8d95432b93410fa759388a21 Mary Tiknis replied to the discussion Reflections and Looking Ahead in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/reflections-and-looking-ahead/#post-17311 Fri, 01 Jan 2021 00:47:50 -0600 Reply to Reflections and Looking Ahead

This was the worse year of my life. Being diagnosed with ALS has been devastating.
I am thankful to Dagmar and Amanda for this forum that allows us to know we are not alone. Dagmar’s book Align Lengthen Strengthen has given me hope and guidance through this awful time in my life. Thank You

]]> 744193725c4b1d390b7ba17ab71dc050 Mary Tiknis replied to the discussion No cure for ALS in sight in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/no-cure-for-als-in-sight/#post-16936 Thu, 26 Nov 2020 22:53:47 -0600 Reply to No cure for ALS in sight

I pray everyday for a cure for this dreaded disease

]]> ea5609c623a8eaa1a1ef97f866918168 Mary Tiknis replied to the discussion Expiration Dates and Other Mistaken Beliefs About Our ALS in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/expiration-dates-and-other-mistaken-beliefs-about-our-als/#post-16846 Wed, 18 Nov 2020 14:01:10 -0600 Reply to Expiration Dates and Other Mistaken Beliefs About Our ALS

I have to control myself from focusing on the thought loops

whenever someone mentions something that will happen in the future I think I wonder if I will still be alive

my biggest fear is being Totally dependent on others for ADL’s washing eating going to the bathroom etc

i am trying to remain in the present as much as I can an enjoy one day… Read more

]]> 621bc3ef1032e5a1aeee798f37ac368d Mary Tiknis replied to the discussion Rilozole experience? in the forum Caregivers and Family ​ https://alsnewstoday.com/forums/forums/topic/rilozole-experience/#post-16785 Thu, 12 Nov 2020 21:10:48 -0600 Reply to Rilozole experience?

I have been taking Riluzole for 3 months on an empty stomach as directed
I noticed that my appetite has been affected slightly Everything taste different and I occasionally feel slightly nauseous I feel like the benefits are worth it
I am also on Radicava
Mary Ann Tiknis

]]> 93c74099e5c3bdb49c5930f6e20deec8 Mary Tiknis replied to the discussion Coming to terms with your diagnosis in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/coming-to-terms-with-your-diagnosis/#post-16676 Fri, 30 Oct 2020 11:51:41 -0500 Reply to Coming to terms with your diagnosis

I was diagnosed in Aug 2020 I am still

going through all stages of Elisabeth  Kubler-

Ross 5 stages of grief

sometimes all in one day

denial, anger, bargaining, depression acceptance

I am so thankful for Dagmar and Amanda  blog It helps me feel not so alone

i have a very supportive family and friends however they do not know how we… Read more

]]> 91d9002e817233d0fb3fc03180968316 Mary Tiknis replied to the discussion Using Ritual to Navigate ALS Transitions in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/using-ritual-to-navigate-als-transitions/#post-16675 Fri, 30 Oct 2020 11:25:42 -0500 Reply to Using Ritual to Navigate ALS Transitions

Thank you Ilana for sharing
It gives me Some hope for the future in regards to handling physical decline
Mary Ann

]]> 426dac8f368c65659cde3c8807f97af5 Mary Tiknis replied to the discussion ALS and driving in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/als-and-driving/#post-16628 Sat, 24 Oct 2020 14:34:00 -0500 Reply to ALS and driving

I am still driving locally

i don’t feel comfortable driving on the parkway or long distances

My husband and kids drive me when I have to go out of town

]]> de8468d1f356c480ec5ae165639deca5 Mary Tiknis replied to the discussion How can we bring about change? in the forum Caregivers and Family ​ https://alsnewstoday.com/forums/forums/topic/how-can-we-bring-about-change/#post-16492 Tue, 06 Oct 2020 20:22:33 -0500 Reply to How can we bring about change?

How can I get involved?

]]> 6a3bb57005ed4d27bef713a23d642e1e Mary Tiknis became a registered member https://alsnewstoday.com/forums/activity/p/8055/ Wed, 30 Sep 2020 15:49:59 -0500 2