[nikki]

I’m from and live in Los Angeles California

[nikki]

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, decide for myself and problem solve for myself. If I’m reaching for the resources to help me solve a problem, it still was my own first initial decision to think aha! There must be a resource for that, let me go look for it.

But all of you wonderful ladies are correct, none of us are truly ever alone, disabled or not. We all need each other at some level

[nikki]

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 have any public our merciful hands to help us wipe our face, eat our food, put us to bed or anything that is intimate and private. They get to handle that all by themselves. I guess in that human normalcy, all that alone time is where they get to deal with their own crankiness, which I’m sure they have.

For me, I often cry it out or when I go to bed at night, I put my Alexa device on volume 2 very low so that my night caregiver doesn’t hear it, and I sing along to the songs I play on my Spotify playlists. That’s the best way that I exert energy. Cranky days to me are pent up energy that needs to be exerted and/or processed thoroughly, which means to your liking. I would suggest finding something that you love to do in any of your private moments that you get to have, spend time doing it especially when something’s upsetting you. I know it’s hard not snipping at the people closest to us, but I tell them that they can’t expect me to be the only one in this care relationship that practices grace. They need to have grace for us too, after all we are the one’s that can’t walk away from our daily challenges.  Remember that you deserve your process.

Thanks for the write-ups on here! Yours is the only other one of the 2 I read ????

[nikki]

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 🙂

[nikki]

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

[nikki]

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 do not need to live with someone, I am not allowed to have extra nursing care hours until I have what they call the network circle. Basically, someone who was willing to be obligated to my needs at any given turn that the state cannot provide a caregiver. It is absurd and yes very controlling. I would suggest beginning at a level of vocalizing against this issue. All state meetings are public and open to the public so, I would start at state websites and find out when they hold their zoom meetings and see if you can attend and voice your opinions. Try your state disability, state Social Security department’s first. I don’t know much about New Jersey, so I don’t know how much nonprofit advocating organizations help out there. Out here, they go where they get funded so their beliefs are for us vocally but not realistically. Basically, they say they help disabled people stay independent but, if it goes against anything that the state might use against them and keep their funding from them, they don’t fight for you. So, I would stay freelance and start vocalizing at that level. Emails are good too but not as effective as a voice being heard out loud, most zoom state meetings and federal meetings are recorded so whatever you say, sticks and is heard. If you have more questions, come out reach out to me at [email protected]

[nikki]

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 advocate against this issue and for disabled persons who need Caregivers. I have done extensive searches as well as my friends and we have found that the major problem is that the country has been utilizing unemployment funds as a source of income. We realize that it is a pandemic, but it has hit our community very hard in regards to lack of caregivers. Here on my end, my experiences are logged and dated because I have dealt with extreme situations. I don’t have a family member to fall back on, I depend solely on community providers. We are seeking answers, we’ve attended state and federal zoom conferences that are made public through the authority figures such as CDSS, Health and Human services and so forth and we have spoken about the problem. Bottom line, it turns out that caregivers are receiving more income on unemployment right now than they are at working their hourly rate for their job. On top of that they are receiving quite a bit of funds for food stamps, so people are well supplied at this point.

It is sad, and I have my opinions about it but I don’t think it’s safe to say so here. But please know, it is being addressed and it is a severe problem, the problem goes as deep as long term care facilities as well. Everyone that needs care right now, yes even daycare centers, are hurting for caregivers. I pray and advocate that the problem lifts soon. Hang tight! We are fighting. My best suggestion would be if you can afford to pay them a little bit more out of pocket, then do so. Unfortunately on our end over  here we are getting the attention of subpar care with subpar characters because the people that cannot qualify for unemployment are applying for jobs and they’re coming into our homes into our private homes and carrying fries. I have endured emotional abuse, physical abuse, drug addicts, even homeless people for the last year. I’ve never seen it this bad so I hope it changes soon. If you care to respond in a more extensive manner, email me at [email protected]

[nikki]

Personally I use Tiger balm and Tylenol.

[nikki]

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!

[nikki]

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

[nikki]

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 long list and my doctor wants me to be cautious about that.

[nikki]

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 time during their shift. So for example, if hypothetically, I send a caregiver out to do grocery shopping while I spend time with a boyfriend, there is no way to not report that. That’s an aspect that people are not looking at. They are only looking at the hours in and hours out, the hassle of having to physically check in for those of us with mobility issues, and the caregivers don’t want to be troubled with having to check in and out. Beyond all that, as I stated above, there is a human rights violation to the privacy of my life. If you wish to get on board with this advocate adventure, contact me.

[nikki]

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 doctor to discuss the details about that so I held off on spinraza because I understood you had to be off of spinraza for 120 days in order to start Evrysdi, so I stopped. I ended up taking my 9th injection because I went against the idea of after talking to my doctor I decided that spinraza was a better fit, but that left me at six months between injections and, I was surprised that I did fairly well. I did have a period of slump but it came and went. Not sure if that means this gets better as we get further into the treatment, but it definitely is a tough time for me to get through. So sorry you have to go through that. I did try supplemental protein when I felt moments of weakness and it helped some but I started to gain weight so I stopped haha! Not sure if that will help you or not

[nikki]

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 everything. But I will say that if we lack bass to project our voice, these apps capabilities do not work well. For me I dictate specifically when I’m doing voice. I’m using voice right now on my Word document then I will copy paste it to the post here so that you can read it. I am dictating sort of in a staccato mode. It seems to pick it up easier. I also have a microphone on my desk that has a gooseneck so that I can bend it towards my mouth and it’s kind of tall so that it reaches up close to my mouth. It’s about 3 inches from my mouth right now. I believe it’s brand name is Fifine.

[nikki]

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 Facebook Messenger but that’s pretty much it. I have very limited finger mobility, so answering and hanging up the phone and dialing on my own is pretty much impossible. I depend on this Bluetooth for all of that and I just wear it in my ear all day long from morning till night until I go to bed. Hope this helps

[nikki]

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 Public Utilities Commission is to provide for the disabled community equipment that pertain to medical needs that could be strained during a natural disaster but sadly they have not upheld their responsibility.

Stay safe

[nikki]

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 you’re not diabetic then the flavored ones are my fave. I also drink smoothies on a daily basis. For the celery blend, I add a good dose of frozen pineapple chunks for sweetness with grapefruit juice and about a half a handful of parsley. I also grind almonds and raw oats for fiber, works wonders! Hope this helps 🙂

[nikki]

Hi DeAnn & Kevin! I’m so glad to be here. DeAnn I write singer/songwriter and adult contemporary genres. You can check out my songs on Soundcloud:

https://soundcloud.com/nday8

 

I definitely will be writing more here!

 

Be Safe 🙂

[nikki]

Hi Alyssa, I’ve been dying to get to this column. This a beautiful piece, and brave. I’ll have you know, I’ve been there. In the past 4 years I’ve watched my body, my small yet vital independence just fade, as if it never had relevance. It was almost impossible for me to wrap my head around the reality of ‘continuing’. But one night I heard a beautiful song that told about being evergreen. The tears just fell out right there at the live show I was at! As this song made its way to my heart, all I really kept feeling was ‘life in me’. I have life, I am life. I went to bed that night playing the song over and over again. And the bottom line is, I realized then that if I choose, my heart can leave behind legacies, yes I wrote it plural on purpose. In a particular part of the lyrics it said “what do you say to get yourself into the day”. We have a choice! Your Mom nailed it! I believe we with SMA get hard lessons on what’s important and what parts of life are not. That’s what makes our hearts invincibly strong and resilient to bitterness and depression or despair.

That’s my experience anyway. Keep believing sweetie 🙂

[nikki]

I would not let anything stop me from a live show, I am an artist so music is everything to me. I’ve been through all of it; put off in the corner that’s supposed to be accessible but screams ‘crane your neck to see for 2 hours but you can’t because your disability doesn’t physically let you, or ‘can you hear the music from the foot of the stairs? I’m sorry we’re not accessible but we’ll tell the band to turn it up loud’. And my personal favorite, ‘we can get some big guys to carry you AND your power chair (all 450 lbs.) upstairs. The fun is when they offer to do it all again after the show and everyone’s drunk, coming down flights of stairs sideways can be scary lol.

But all frustrations and dangers aside, I wouldn’t change it for the world. I learned that planning ahead is best. Know your venue managers by first name, call and ask what their floor layout is and what their handicap seating arrangements are. If you’re going in a group, try and have everyone purchase their tickets ahead of time and coordinate with the venue manager beforehand. It’s hardly ever going to be a perfect situation for us but it’s all about picking our battles wisely.

[nikki]

Embracing SMA is a process. I’m 51 and was diagnosed at age 3 and I still have struggles with what I think I can do, should be able to do and in actuality can’t do. For my mature age, accumulating accomplishments is important in our society. But I’ve learned to accept that it takes me much longer to meet deadlines and be ‘camera ready’ than most and it can frustrate me because often times I miss opportunities. Dealing with challenges is more mental work then anything. I say this because I’ve learned that it’s more myself that places these inhibiting expectations because when I handle myself with grace and acceptance, the people around me embrace me with ease and reason. So being kind to ourselves in our disease helps the world around us love easily.

[nikki]

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