Welcome to our new members – – August 2023

[Dagmar]

Welcome all 🙂

[Dagmar]

• Where in the world are you from? I’m from Iowa, but now live in Arizona.
• Do you have ALS or know someone who does? I have ALS – 13 yrs now.
• Are you on any treatments? Only Riluzole.
• What hobbies do you have? I love to knit! And create graphics on Canva.
• What is your favorite music genre? Rock n Roll, and early 70s.
• Do you have a personal motto? One thing at a time.
• What is the best place you’ve visited? Bali, Indonesia.

[Mia Farrell]

• Where in the world are you from?
• Do you have ALS or know someone who does? My husband was diagnosed in June 2023. 
• Are you on any treatments? He is on Riluzol and Relyvrio
• What hobbies do you have? We enjoy everything outdoors and have been avid hikers. 
• What is your favorite music genre? Mine is country. His is a mix of everything. 
• Do you have a personal motto? No but I need one. Lol
• What is the best place you’ve visited? So many to choose from! Would have to say the top of Mt. Kilimanjaro! 

[Dagmar]

the top of Kilimanjaro! Please tell us more 😉

[Mia Farrell]

My husband and I summited Mt. Kilimanjaro in 2014. It was one of the most amazing experiences of our lives. The summit is 19,341 feet and wow what a view from the top!! Absolutely breathtaking. Literally and figuratively! It took 7 days hiking and acclimating to the altitude to reach the top and 1 day to get down. Our bodies were more exhausted than ever before once we were done hiking down. We figured that we hiked about 21 out of 24 hours the day we summited and then headed down. Something we reminisce often about. Definitely a once in a lifetime experience! We also met a wonderful group of people from all over the world we have been blessed to keep in touch with and continue our travels.

[Dagmar]

What a wonderful memory! I admire your stamina and determination (and bravery!) Thank you for sharing the adventure.

[KJD]

Hello all, I joined after this posting but figured I would jump in to answer anyway 🙂

• Where in the world are you from?
  Manitoba, Canada
• Do you have ALS or know someone who does?
  Yes, I have the same identical SODS1 variation as my two brothers, although I am not showing any symptoms yet.
  My eldest brother died in May choosing MAID – medical assistance in dying – and my middle brother was diagnosed earlier this year after starting to show symptoms in Aug. ’22.
• Are you on any treatments?
  No, not yet, although I am being submitted for the double-blind Toferson trial.
• What hobbies do you have?
  Gardening and cooking.

  I have a small yard, so I rent a garden plot with one club and volunteer with another, which distributes the produce to organizations that provide meals to the homeless, seniors, food banks, etc.
  Our summers are short here so making these commitments ensures I’m out and about getting physical and social interaction and Vit D.

  I like feeding people and cooking for a crowd.

• What is your favorite music genre?
  I’d have to say Blues, although I listen to everything besides hard-core jazz, opera and heavy, heavy metal.
• Do you have a personal motto?
  Stolen from a beloved boss who died too young from insidious cancer: Every day is a good day.

<b style=”background-color: var(–bb-content-background-color); font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>What is the best place you’ve visited?<br style=”background-color: var(–bb-content-background-color); font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>I’ve been very fortunate to travel a lot so I think this question is unfair lol.<br style=”background-color: var(–bb-content-background-color); font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>

• Listening to beluga whales ‘sing’ while floating in a boat on Hudson’s Bay was magical.
• If I could afford it, I’d winter/live in Costa Rica b/c I’ve always loved the feeling of heat penetrating into my bones and my skin soaking up the humidity.
• Scotland felt like home.
• Iceland was hauntingly beautiful.
• But #1 would have to be Kluane National Park in the Yukon.

[Dagmar]

Hello KJD and we welcome you, all the way from Canada!
What a wonderful experience, to listen to whales singing… and I hope you are cooking up some tasty treats for your family and friends. Costa Rica and Scotland seem such opposites, but I totally agree that one place gives physical warmth and the other, physical memories.
I like your motto!
Thank you for sharing with us!

[N.N.]

Say, I can’t seem to work this forum. I can’t add a picture or reply to a discussion. Any help would be appreciated.