Welcome Our New January Members!

[kayla-samz]

Your name and location? I’m Kayla Samz I’m 33 years old and from Mishicot, Wisconsin.
Are you a patient or caregiver? I’m the patient and have SMA Type 2-3.
How old were you when you were diagnosed with SMA? I was diagnosed with SMA when I was 1 1/2 years old with a muscle and nerve biopsy. Got my first wheelchair at the age of 2. I thought it was the coolest thing ever because it had a panther on it lol 😆
Are you on any treatments? 2019 I started on Spinraza and did that for 17 injections. Then I heard about Evrysdi and how I just had to take it once a day and didn’t have to have several urine and blood tests the week before getting a Spinraza injection. I’ve seen differences in both medications, like more energy throughout the day, more hand and arm strength on Spinraza and more toe and leg movement, arm and hand movements on Evrysdi.
Favorite type of music to listen to? I really enjoy listening to anything that is popular on the radio. But my all time favorite band is Fall Out Boy and my favorite solo artist is Bruno Mars. I’ve seen both in concert more than once!
Any hobbies? I like crafting especially around the holidays because I make each couple in both families homemade ornaments. I enjoy reading SciFi, mystery’s, and biographies. I enjoy watching new action, romance , comedy movies. I love watching my favorite movies on Netflix, Hulu, Disney +, Paramount +, Pluto TV, Nosey App, HBO Max and other Roku free channels. My all time favorite show is Cheaters and The Big Bang Theory. I also like playing games on my phone and board games. I love snuggling with my cat Lola and spending time outside with my black lab Bella. I love hanging out with my group of 8 school friends. I’m so grateful for them and some of them I’ve known since kindergarten. I love spending time with my family, especially my nephew Drake who is 1 1/2 his smile brightens my day! I also found out I’m going to be another Auntie in late July!

Can’t wait to meet all of you!

[alyssa-silva]

Thanks for introducing yourself Kayla! Fun fact: Fall Out Boy was my first-ever concert. 😆 It was more to see the opening bands (Panic! At The Disco and Motion City Soundtrack), but FOB was awesome too!

[deann-r]

@auntiekay Hey Kayla! Awesome to meet you. I have a feeling you’re going to fit right in here. We have a lot of creative members. Crafting is one of my favorite hobbies. What types of ornaments have you made? We also have a lot of pet people here too. I have two cats and a dog myself. Horton is a 5 year old black lab. How old is yours? I’ve seen Bruno in concert too. He puts on a fabulous show. Congratulations on becoming an auntie again! Do you know if it’s going to be a boy or girl?

[kayla-samz]

I’ve made so many the past 15 years but my favorite was a pickle and this year’s was a mini snow globe. My black lab, Bella, is 7 and my calico cat, Lola, is 13 years old. Being an auntie brings me so much joy! They aren’t finding out the gender, as of right now. So I have to wait nervously to find out whether it’s a boy or a girl in July. Thank you for welcoming me with open arms!

[alyssa-silva]

Auntie life is the best! We’re so glad you’re here Kayla. 🙂

[deann-r]

Those sound like fun projects. Pondering how you craft a pickle. Do you have a favorite craft medium? Lately I’ve been paper crafting. Mostly cards because they’re small.

Have you had Lola since she was a kitten? I miss my ol’ kitty Tic-Tac. She was 15ish. My aunt rescued her from the streets. Now I have a 2 year old I call Little Kitty (Big Little Kitty now) and one that’ll be a year this summer. Her name is Boogie because she is a booger and has a spot on her nose.

It seems to be a trend not to find out what you’re having these days. My sister wasn’t going to until she found out she was having twins! Then she had to know so she could prepare. That was 18 years ago already. Still don’t know if she’s prepared for two girls, ha ha.

[kayla-samz]

The pickle was made with felt. my mom cut out two identicalpieces of felt then stuffed batting in between the two pieces of felt and loosely stitched what  together and put googly eyes on them.

[kayla-samz]

I’ve been into button art lately but I like paper crafts too. I just made a button bouquet 💐

All of my cats I’ve had been babies when I got them. they all were all barn cats too. I love your pet names! So cute 🥰

Oh by the way they found out the sex of the baby….💙 a boy 👦

[kayla-samz]

• The pickle was made with felt. my mom cut out two identical pieces of felt then stuffed batting in between the two pieces of felt and loosely stitched what together and put googly eyes on them. Also stitched a little smile ☺

[kayla-samz]

So sorry that is all repeated and miss spelled a bunch of words. And sorry for the late response Voice control doesn’t always hear me correctly. What kind of cards do you make?

[selouna-visser]

Hi All. I’m sorry it took so long to introduce myself. If it isn’t work keeping me busy, it is google that is preventing me from signing into the forum. Anyway, all that is sorted now and I can finally introduce myself :-).

My name is Selouna Visser. I am 27 and I am from South Africa. I was diagnosed with SMA type 3 shortly before my 2nd birthday. I was able to walk until the age of 7 but are making use of a wheelchair permanently since 17 October 2002. I am not on any treatments for SMA but would love to investigate it in the near future.

I listen to quite a variety of music so it is difficult to pick a favourite but I listen to pop, instrumental and country the most. One of my favourite pop groups is ABBA. When I listen to instrumental music I like to listen to piano and violin and I also tend to like dramatic instrumental music like gaming music etc.

I have quite a few hobbies. I like to read novels (mostly fiction, sci-fi, paranormal and sometimes history books as well), watch movies and series on Netflix and YouTube, colouring, gardening and baking with my younger sister. I also recently got myself a recorder to challenge myself to learn to play a new instrument since I have difficulty playing the piano and guitar these days and also as a way to exercise my lungs. (I need to do lung exercises but I hate exercises if it is not fun.)

O, and I also have a pet Jack Russel. Her name is Gena and she is 61/2 years old.

[deann-r]

Welcome Selouna! Sounds like you keep busy too. It’s always great to have perspectives from around the world. How are disability services in South Africa? More importantly, depending on who you ask, how’s the weather? I’m suspecting I might be a bit jealous with your answer there.

You make me want to resurrect my old recorder. Once upon a time I played a mean Mary Had A Little Lamb. That was the extent of my skills. Have you played any tunes on it?

Give Gena a pet from us! Be sure to let us know if you have any questions. We look forward to having you in the forums.

[alyssa-silva]

Hi Selouna! Thank you for introducing yourself here. What do you do for work? And what type of country music do you listen to? I love Kenny Chesney but really all country music!

[selouna-visser]

Hi Alyssa. I am the IT manager and the BSc IT distance learning manager for the School for Computer Science and Information Systems at the North-West University. Apart from my full-time job, I am also busy with my Master’s degree in Computer Science. My goal is to submit my dissertation by July.

It is difficult to pick just one favourite country singer since I listen to a variety but Shania Twain, Elizma Theron and Juanita du Plessis are some of my favourite country singers.

[kayla-samz]

Welcome Selouna😊 Nice to meet you

[selouna-visser]

Hi DeAnn. Thanks. Disability services are very challenging in South Africa. You only get assistance from the government for the bare minimum and that is also only if you fall below a certain income level (which is also very low). Most of the time you are dependent on what financial resources you or/and your family members can get together. Sometimes crowdfunding also helps a bit for bigger expenses such as buying a new wheelchair or expensive equipment though personally, I don’t like to use this option unless I have no alternatives. It makes me feel like a charity case. I would much rather do something or sell something that would make me feel like I deserve the money. The other challenge is that there are actually very few medical personnel here who is quite knowledgeable about SMA. It is refreshing when you meet a medical personnel member who knows more than the prescribed paragraph from their textbooks.

Regarding your question about the weather. Like you said it depends on who you ask and I guess it depends on where in South Africa you live. I live in Potchefstroom in the North West province which is part of South Africa’s drier and warmer areas. We mainly get summer rain. Our summers are very warm, between 30 to 35 degrees Celcius, but when we have heat waves during the drought seasons it can easily go up to 40 degrees Celcius. It is definitely not fun anymore when the temperatures go above 35 degrees, especially when the air is very humid as well. We are also one of the places in South Africa where it can get quite cold during the winter, however, we do not get snow in Potchefstroom and normally we do not get rain in the winter. We do get freezing cold winds when there is a cold front moving through the country though. Our minimum temperatures for the evenings in the winter range between -4 and 0 degrees Celcius, though it can get much lower during cold fronts, and the average daily temperature is between 8 and 15 degrees Celcius. My favourite seasons are autumn (fall) and spring. What is your favourite season and how is the weather where you live?

I haven’t played any tunes on my recorder yet. I’m still learning to play the notes and to get my fingers on the right places at the right time. I guess my fingers aren’t as flexible as I thought :-D. How long did it take you to learn to play and what type of recorder did you play?