[halsey-blocher]

Hope everyone feels better soon! I’m fortunate in that my nurses rarely get sick (knock on wood). However, when they do, I don’t take the chance of catching anything from them. If someone does get sick, we check with the others to see if they can fill in temporarily, and if not we have to rearrange our schedules to make do without them until either someone becomes available or the sick nurse feels well enough to come back to work.

[halsey-blocher]

I understand not wanting to hold them back, but I’m sure they aren’t the least bit bothered by your needs. I’m sure it’s much more important to them that you are healthy and comfortable. I’ve never liked having to tell people that I can’t do something with them, but they’ve always been very understanding and accepting.

[halsey-blocher]

Merry Christmas everyone!

[halsey-blocher]

Hi Kyrie! I’m a 21 year old type 1. You’re questions are all great and it’s great that you’re asking them! Your daughter is young so she would be very likely to benifit from Spinraza. It’s something you should definitely educate yourselves about and discuss. While it sounds like your daughter isn’t having any trouble breathing, I would still encourage you to meet with a pulmonologist. It would be best if you could meet one who specializes in SMA. Even if she is doing well, you’ll still want to monitor it so you can stay on top of any problems that arise. I got my feeding tube at the age of 13. At that point it became too difficult to eat enough by mouth so we began supplementing with the tube. Aside from that, I eat whatever I feel like. You’ll have to decide for yourselves, and possibly with your daughter depending on how old she is when it begins to be discussed, when the right time is to get a tube if at all. What DeAnn said about treating her like a normal child is perfect. Always encourage her and make sure she is included. Support her, love her, and fight for her. Remember that she and you will have good days and bad days. Never give up on her. If there’s ever anything you need, any of us here would be happy to help however we can.

[halsey-blocher]

I’ve had things like this happen multiple times. Sometimes we are able to work things out, but a lot of the time the last minute call offs tend to indicate it isn’t going to work out. I always hate when it happens, but the needs of me and my family need to come first. Praying you find a new PCA that will be dependable and exactly the right person for you!

[halsey-blocher]

My caregivers tend work longer shifts and generally enjoy having some down time during their shifts. Most of them see coming to work as an escape from stress actually. If you go for longer shift just make sure you always encourage them to bring something that they will enjoy doing like a book or their laptop. Kevin also mentioned a caregiver who studied which is a great option. I’ve had many nurses who did homework while at work. And as you get to know them, chances are you’ll spend lots of time chatting or finding other activities that you both enjoy. I have a nurse who has discovered she loves Mario kart (even though she pretty bad at it) and another loves to help me cook. I’ve even had nurses who will be very excited to sit and color together for hours. I had one always marveled at the fact she got payed while coloring. And eventually you might find that you both just enjoy some companionable silence. At the end of the day, you’ll just have to see what ends up working for you and each individual caregiver. And remember not everyone will be a good fit for you and that’s perfectly okay.

[halsey-blocher]

My nurses always get time off for the holidays to spend time with their families. Fortunetly, my mom also has time off around the holidays, so she is able to take over most of my care. A lot of times my family and I have the same plans this time of year, so it works out. I also like the part of your article about not being a burden. It can be hard to feel like like your bothering or interrupting, but I know my parents don’t mind helping.

[halsey-blocher]

I’ve never used just the inhale on mine. I use it regularly three times a day and whenever I feel like I need it. It makes a big difference in my breathing!

[halsey-blocher]

Handicap seats in theatres definitely have room for improvement. Not being able to seat with everyone in your group is not ideal. Most theatres here have only one or two chairs next to the wheelchair seat, so someone almost always has to sit in the row behind me. We do have a regal cinema here that has a few theatre rooms with four seats next to the wheelchair spot. We also have a cinema grille here which is nice because my family can all sit together around a table, plus we get amazing food while we watch our movie. I’d really like to see movie theatres take more consideration to the fact that people in wheelchairs should be able to sit with their family and friends too.

[halsey-blocher]

I definitely stay in more during the winter both due to the flu season and the fact that I hate the cold. I agree with Kevin that it’s still important to get out some. Sometimes staying in to much can be just as bad for your health as a cold, just in different ways. The one place I rarely hesitate to go during the winter is called Turnstone. It’s a center for people for disabilities where I am a volunteer and a client in our adult day service (ADS) program. They’re very good about keeping it clean and we have a clear illness policy that staff, volunteers, and clients are expected to follow, so I don’t have to worry too much about catching anything while there. I go twice a week and love getting to spend time with everyone there. They have all really become like family, and spending time with them regularly is always an enjoyable and uplifting experience.

[halsey-blocher]

Fatigue can indeed be so very frustrating! I’ve found that it can help to let other people  help me with some of the smaller things that I can actually do myself, like moving my arms, or lifting things off the table. But when I ask others to help with some of these things, it allows me to save some of that strength and energy for things that are more important things like eating, art, activities outside of home, and, this time of year, gift wrapping. It would be ideal to do everything that I can on my own, but I’d rather conserve energy for what is most important to me.

[halsey-blocher]

Very good article! Staring has really never been something that bothers me. Most of the time I don’t notice. When I do I just smile, and I always say hello when I notice a curious child.

[halsey-blocher]

I love the sheep skin! I’ve been laying on it when I do my breathing treatments. The cat thinks it for her, but she thinks everything is for her.

[halsey-blocher]

I’ve been friends with Adyn and her family for a long time, and I love how well their organization is doing! The secret Santa was a big hit last year!

[halsey-blocher]

I do not live on my own and am very happy living with my parents for the time being. Caregivers would be a big hurdle for me. I have a trach a this need round the clock care. It seems pointless to live on my own until we come up with a realistic solution for that. Otherwise, my parents would spend half their day at my house, or I’d spend mine at theirs, completely defeating the purpose. But like I said, I’m very happy for now, so we have time to figure that out. Good luck getting everything sorted out! If you need company in warmer weather, count me in!

[halsey-blocher]

I agree that it is nice to discuss more than SMA. There are, however, some relative that prefer not to discuss thing like work, school, and dating with. Not because I dislike any of these topics, but because some people just don’t seem to understand why I’m not doing things they would expect me to, or why I do them differently. And with some people it feels like no amount of explaining will clear it up. They just don’t seem to grasp why I’m not in school, why I don’t have “job,” (I do volunteer work, and consider that my job) or haven’t dated. However, with people who are more understanding, I certainly welcome any conversation topic from SMA related discussions, to work, to the weather.

[halsey-blocher]

I’ve known a few kids like this. I think it’s something they just have to grow out of. My best friend’s youngest daughter was scared of my chair for quite awhile. She wouldn’t get anywhere near it unless it had remains still for about half an hour. As soon as moved again, she was across the room! But eventually she got used to it and I’m pretty much her favorite person!

[halsey-blocher]

I have used the T70 for several years and it is hands down my favorite machine! I take it everywhere and use it several times a day. It takes getting used to, but I’m guessing you’ll really like it.

[halsey-blocher]

Wow! That’s terrible! It so unfortunate that these kinds of things happen! Sorry DeAnn!

[halsey-blocher]

That’s very similar to what my family does. We go every New Year’s Eve.

[halsey-blocher]

I have only laid on mine, but I imagine it would be extremely comfortable to sit on as well. It’s definitely very comfortable to lay on!

[halsey-blocher]

I didn’t go to the Dallas conference, but I heard the concert was great!

[halsey-blocher]

Most definitely! I’ve been very blessed to get to do what I do!

[halsey-blocher]

I do pretty wide range of work. I’m a client at our local center for people with disabilities (Turnstone) in our adult day service (ADS)  and I take some time out of time as a client to help lead some of the activities, and read to our memory care clients. I also serve on committees to help plan fundraisers and collect auction donation items. I greatly enjoy it and love the people I work for and with.