Nikki

I’m from and live in Los Angeles California

Independence to me is handling my own affairs and obligations of my own recognizance. I have many sets of hands that help me, as a lot of us do. But I don’t believe that subtracts from my independence. They are not thinking for me, deciding for me nor problem solving for me. So I suppose independence for me is being able to think for myself,…[Read more]

Hi DeAnn, first of all, bless your heart for being so honest with yourself and transparent with us as your SMA community. In my experiences, “cranky days” is one of those challenges that we have to master. It is unfortunate because I don’t think the able-bodied world has to deal with it as much. They can run off and be alone without needing to hav…[Read more]

I’ve written a couple of articles for magazines. Feel free to email me [email protected]

Hi Daniela, welcome! I am 53 years old with type 2 SMA. I’m a novelist and songwriter here in city of Los Angeles CA. So glad to meet you and good to see you here 🙂

What a fabulous job! I am so proud to be a part of this community! I love SMAers!!

Hi Tammy, I am so sorry that this happens. I am an advocate, ad hoc, which means I do freelance advocating at state and federal levels. I don’t belong to any organization, it’s just me and a group of friends who have been advocating the state and federal bureaucracies on our own accord. Yes, we have something similar here in California. Although I…[Read more]

Hi Alyssa, I really wanted to reach out to you about this issue. I appreciate that you’ve taken notice and I am so sorry and sad that you have had to deal with this sacrifice. So, caregiving shortage is a national issue right now. I am part of a network of disabled advocates here in Los Angeles and we are working tirelessly around the clock to…[Read more]

Personally I use Tiger balm and Tylenol.

Hi alyssa it does not count toward your SSI. I think you get like a year to spend it. But it will not count against your monthly income so you’re fine. Enjoy!

Are the hallucinations related to SMA, and how so medically speaking?

Hi Deann thank you for this post! I’m so thankful that you gave your experience. I’m in Los Angeles CA and we have not been given the green light yet to make an appointment for the vaccine. My doctor however, he has asked me to hold off. I was wondering, you seem like you had such a mellow experience, do you have any medicine allergies? I have a…[Read more]

Hey sweet @alyssa, so I have been part of an ad hoc advocate group that has been fighting against this in California. Nobody we know wants it, including providers and clients. We are very frustrated and it feels very violating to us as recipients. It puts us in question as to where we are , and whether or not our caregivers are with us the entire…[Read more]

Hey beautiful girl, I’m very susceptible to this slump. Usually starts happening about the middle of the third month. It seems to be getting better though. It’s not coming on so early lately. I’m in on my 9th injection. I also had to take a step back during the pandemic but, it was because I was considering Evrysdi. I wanted to wait to see my…[Read more]

Hey Alyssa, I totally get what you are going through. So spinraza wears off usually by the third month. Stick with it, they say for the adults like ourselves it gets better by the 3rd year. Although I don’t know how long you’ve been with it. I’m in my second year , it will be three years for me in June 2021. Regarding typing, I use voice for…[Read more]

Hi DeAnn, I use a regular Bluetooth on my ear. I did a lot of research and so far, I found that the Plantronics Voyager 5200 is one that allows me to do most everything by voice. All except lock or unlock my phone, turn my phone off and on. It also doesn’t work with apps. It works solely with my contacts on my phone, text messages or WhatsApp and…[Read more]

Hi Alyssa, it’s very very bad. I am staying indoors except for the occasional grocery errand and doctor appointment. I had black mucous from my nose and incessant coughing for the better part of the week. I am 10 miles from the Bobcat fire. Although it is beginning to clear up, a humidifier would have helped. There is a policy that the California…[Read more]

Hi Alyssa, I don’t know about you but my doctor attributes my constipation issues to 1) the obvious of lack of muscle movement in the intestines which I’m sure you’re aware of and 2) lack of potassium. Turns out my body get rid of more potassium then it should. For me I have found that 2 to 3 glasses a week of Pedialyte moves things along. If…[Read more]