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Mary Tiknis

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@mtiknis

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    Mary Tiknis replied to the topic Have you changed your diet since being diagnosed with ALS? in the forum Living With ALS 1 year, 5 months ago

    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

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    Mary Tiknis replied to the topic A message from one of your Moderators in the forum Living With ALS 1 year, 7 months ago

    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

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    Mary Tiknis replied to the topic Delta in the forum Coronavirus (COVID-19) and ALS 1 year, 7 months ago

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

  • Profile picture of Mary Tiknis

    Mary Tiknis replied to the topic Check in on Summer in the forum Living With ALS 1 year, 7 months ago

    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

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    Mary Tiknis replied to the topic A brand-new sub-forum: Let's discuss mobility, technology and medical equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 year, 7 months ago

    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

  • Profile picture of Mary Tiknis

    Mary Tiknis replied to the topic AFOs: Are they worth it? in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 year, 8 months ago

    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.

  • Profile picture of Mary Tiknis

    Mary Tiknis replied to the topic Winter, Spring, Summer or Fall in the forum Living With ALS 1 year, 8 months ago

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

  • Profile picture of Mary Tiknis

    Mary Tiknis replied to the topic New study shows ALS/MND damage to nerve cells can be repaired by improving the energy levels in mitochondria in the forum Research Topics 2 years, 1 month ago

    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

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    Mary Tiknis replied to the topic Reflections and Looking Ahead in the forum Living With ALS 2 years, 2 months ago

    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

  • Profile picture of Mary Tiknis

    Mary Tiknis replied to the topic No cure for ALS in sight in the forum Living With ALS 2 years, 3 months ago

    I pray everyday for a cure for this dreaded disease

  • Profile picture of Mary Tiknis

    Mary Tiknis replied to the topic Expiration Dates and Other Mistaken Beliefs About Our ALS in the forum Living With ALS 2 years, 4 months ago

    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 a…[Read more]

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    Mary Tiknis replied to the topic Rilozole experience? in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 2 years, 4 months ago

    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

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    Mary Tiknis replied to the topic Coming to terms with your diagnosis in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 4 months ago

    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 f…[Read more]

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    Mary Tiknis replied to the topic Using Ritual to Navigate ALS Transitions in the forum Living With ALS 2 years, 4 months ago

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

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    Mary Tiknis replied to the topic ALS and driving in the forum Living With ALS 2 years, 5 months ago

    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

  • Profile picture of Mary Tiknis

    Mary Tiknis replied to the topic How can we bring about change? in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 2 years, 5 months ago

    How can I get involved?

  • Profile picture of Mary Tiknis

    Mary Tiknis became a registered member 2 years, 5 months ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 2 years, 5 months ago

      Hello Mary,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]

    • Profile picture of Amanda
      Amanda replied 2 years, 5 months ago

      Hello Mary, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]

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