[Mary Tiknis]

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 feeding tube 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

[Mary Tiknis]

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

[Mary Tiknis]

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

[Mary Tiknis]

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

[Mary Tiknis]

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

[Mary Tiknis]

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.

[Mary Tiknis]

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

[Mary Tiknis]

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

[Mary Tiknis]

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

[Mary Tiknis]

I pray everyday for a cure for this dreaded disease

[Mary Tiknis]

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 at a time

i am praying alot

it gives me hope that Dagmar is 10 years into the disease and is still so hopeful and able to walk with assistance

mary ann Tiknis

[Mary Tiknis]

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

[Mary Tiknis]

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 feel

It is good to be able to share with people who are going through the same experience

I have hope for a cure in the future I am going to participate in a trial

Mary Ann

[Mary Tiknis]

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

[Mary Tiknis]

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

[Mary Tiknis]

How can I get involved?