Spinraza Treatments: LET THE FUN BEGIN

There is a treatment for Spinal Muscular Atrophy, the neuromuscular disease that I have. There are also several others coming down the pike, but… To the best of my knowledge, only one is currently deemed fit for public consumption. It is called Spinraza.

BioGen’s Spinraza information

FDA approves first drug for spinal muscular atrophy

SMA Foundation DRUGS IN DEVELOPMENT

ANYHOW… Next week I will begin treatment with Spinraza. It seems to work REALLY well with infants and young children, less well as we age. Also, this is not a “one and done” treatment. I don’t get to swallow a magic bullet and began leaping around the room. This is more like insolent for a diabetic.

I will get two doses in April and and two more doses in May. After that, quarterly. For life. (Unless I tell them to stick it someplace else…)

picture of a needle going into the lumbar region of the spine
LUMBAR PUNCTURE Photo credit: iem-student.org On Visual Hunt CC BY-NC-SA

Did I mention that they will withdraw some spinal fluid and replace it with medicine? I was actually going to do this last year, but… With my spinal fusion, it was difficult. They are going to do it with a CAT scan from a really weird angle.

Here is what some others with spinal fusions has said about the process:

My First Spinraza Injection Was Like Something Out of a Comic Book
(Absolutely not! They are not going to go through the side of my neck. If something goes wrong going into the lumbar region, it will mean the end of my track and field career. If something goes wrong and they inject that into my neck, no breathing or computer use.)

My Spinraza Journey

I admit, I’m a little bit nervous about the whole thing.

What Are Some Side Effects?

Here Is the List from WebMD

Yeah… It’s enough to make your hair fall out if you worry about it too much. I already have a good many of these symptoms anyhow. Nothing new under the sun…

 

I Need to Come up with More Ideas for Attendant/Caregiver Searching

woman with a funny facial expressionlooking between her fingers
Searching…

Like most people with SMA2, I started to learn how to hire and train caregivers at a young age. I was 12. I didn’t particularly care to wear the “Human Resources” at at that age.

I still don’t.

I DO prefer it to finding out what agencies will send me. Usually, they have been unfair to the caregivers and to me. Often, they send people  from 35 minutes away for a very short time. The worst experience I’ve had with agencies is what they told me to go buy a 10-year-old girl. (I pretty much decided to ignore them ever since!)

I am probably using rose-colored glasses when I look back on those days. It seemed to me that ONLY having the option to post jobs in a newspaper worked better than all the options we have now.

Here is my current list of posting places, along with a few comments.:

  • I rarely use it, but probably have to include CraigsList in the mix. I have never had good luck here, but it is so widely used that I have to mention it.
  • I am also not particularly impressed with Care.com, although I have gotten two wonderful caregivers through it. Wading through all the gamesmanship there is discouraging.
  • ClassifiedNY.com has listings for free all over the US. It’s a little bit different, I am testing it now. Why do I suspect that it will be worth every penny I’m paying? Maybe I’m just cynical…
  • One of the newer places geared specifically for finding caregivers is HireMyCare.org. Since it is new, they don’t seem to have a lot of people in all areas, and it is skimpy around here. It has potential… I HOPE!
  • I don’t know what to make of Oodle, but I like that I can link the advertisements here with Facebook.

What resources have you come across? Feel free to add them here… I will also add more in the comments.

2+ Personal Care Assistant Positions

I am in Conroe (near I-45 and 1488) and am looking to create a caregiving team for myself to provide me with assistance seven days a week. Initially, I am looking for 2 more part-time caregivers to cover three days per week, three hours per day. Ideally, this position would be Tuesday and Thursday, 7 AM-10 AM and Sunday 6 AM-8:30 AM. While I can be somewhat flexible in selecting the time we agree upon, once we agree on the days and times… Please be here when you agree to be here.

Pay range is $10-$13 per hour.

I am looking for someone to assist me with personal care, household chores, and physical assistance. This includes but, is NOT limited to the following: bathing, changing, dressing, grooming, repositioning, and occasionally doing laundry, dishes, and light housekeeping. *NO EXPERIENCE OR CERTIFICATIONS REQUIRED*

Applicants MUST:
– Be Comfortable Doing Personal Care
– Be Able to Pass a Background Check
– Be Able to Follow Directions
– Be Fluent in English
– Be Easy-Going
– Be Detail-Oriented
– Be Hard-Working
– Be Punctual
– Be Reliable
– Be Quick Learner
– Be Organized
– Be Careful
– Be Trustworthy
– Be Respectful of Our Home, Pets, and Privacy
– Have Reliable Transportation
– Have Ability to Comfortably Maneuver (Roll, Push, and Pull) 130 pounds
– Have Strong Communication Skills

While the selected applicants will be employed through In-Home Attendant Services I am something like the local (very local, my home) Human Resources branch office. I select, hire, train, do regular evaluations of my own caregivers.

Here is a little bit about me. My name is Lisa and I am a 50-something-year-old female. I was born with a neuromuscular disorder that was supposed to kill me by age 2, but I didn’t listen to the doctors then… or now. Currently, I am a quadriplegic but I do have full sensation. I get into my wheelchair (powered) using a Hoyer lift. Most times, you’ll find me attached to a computer or other device that broadens my universe. I enjoy teaching at a university level. Some of my hobbies include science fiction and Lutheran theology. Both my Mother and I have faced health issues this year. As a result, my sister, brother-in-law, nieces, and nephew invited us to share their home and made us quite welcome. We all are looking for a team of Personal Care Assistants to help make our lives run more smoothly. More importantly, this will help me gain more independence in my own life. I am eagerly looking forward to meeting you.

Serious applicants only, please!

If you wish to speed things along, I do have an online application:
https://www.surveymonkey.com/r/P9QX2Z6

Learning to use a telephone

For years, I’ve been working on the assumption that I cannot use a cell phone. I can’t swipe or pinch or twiddle

Typical selfie
Where am I?

various thingies. After seeing what people post, I didn’t particularly think I was missing out on much.

Then… I discovered the awful truth! I WAS WRONG!

There is a device called TECLA. 

Tecla lets you use a single switch (on off) to use a cell phone or tablet. Granted, you don’t have to go THAT bare-bones. You can use as many as four switches or a joystick.

Today, I discovered the camera. (Yes, I knew it was there before. I had even taken pictures. I just realized how much fun this was!) Here is an intentional selfie. I deleted the unintentional ones.

I double-dog-dare you to come up with a caption for this one. Better yet, make up a story about where I am!

I’m Looking for a Helper

Feel free to share this

 

ITEM LOCATION

PARTTIME Helper/Provider/PCA/Caregiver
CONROE

 
ITEM DESCRIPTION

Caregiver needed in Conroe (near FM 1488 and I-45) area for quadriplegic woman. Part-time: 7:30-11:30 AM, M-F. (Sunday 6:30 AM to 8:30 AM also needs covering.) Must be 18, have valid Texas Drivers License (or ID), and pass a background check. No experience necessary. Personal care (including bedpan), food preparation, and other assistance as needed. To apply, e-mail to: confessionalgal@ATT.net This position is paid by the State of Texas through an agency. I have little say on the pay rate.

CONTACT INFO


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