Remembering Angela Ronson

 

To all of Angela's friends, this is her eldest daughter Marina:

My mom Angela Ronson peacefully passed away early Friday morning in her sleep at the age of 51. Life has a bit of a different outlook than it did when I woke up this morning.

I know 51 sounds young, but my mom was living on borrowed time. My family and I are so grateful we got to have 19 extra years with her after her AVM ruptured and she had her stroke in December 2002. I knew the day would come when I would lose my mom for the second time, I just didn’t expect it so soon.

My mom loved living, and she fought like hell to stay earth side as long as her body would allow her. She was one of the strongest and smartest people I’ve ever known in my life and I’m so blessed and grateful that she brought me into this world. Her wit and tenacity and resilience were thankfully passed on to me, as was her bravery. She stuck around long enough to get to know her granddaughter Layla and to see me and my sister both graduate from high school. These things are more than I ever could have asked for. I wish like hell she could see me graduate college next year, meet my future spouse, and that my future children - her grandchildren - could have met their grandmother. They would have loved her.

My mom loved my sister and I so much and was always so proud of us, even when we struggled. She gave us everything she could even though life was not easy. I am going to miss her dearly.

Angela is survived by her parents, Myra Metz and Robert Ronson, her stepfather Alan Metz, her sisters Carla Mahaffey, Vanessa Mejia, and Gina Ronson, her 10 nieces and nephews, her daughters Marina Pauline Garcia (me) and Sarah Alyce Daneri, and her granddaughter Layla Diane Abasta.

I will be in the process of making arrangements over the next few days and will keep loved ones posted. If you knew my mom and would like to get in touch with me, my number is (714) 478-3181. I may not be able to answer right away, but I will be responding to texts and calls as I can.

Donations toward funeral costs can be made directly to myself through Venmo or Zelle, both of which can be found via my phone number. Venmo can also be found via @marinapaulineee.

There will be a virtual service with details posted in the coming days. If you have photos of or with my mother, please email them to marinagarcia94@live.com or text them to me.

Thanks in advance for everyone’s love and support.

Getting a Hospital Bed

Medicaid/Medicare will provide a hospital bed, but you need a prescription. I needed a prescription for this one. You usually order through your local medical supply store. My first bed was ordered and arranged by the hospital social worker. Subsequent beds were done by myself and family. I'm on my third bed. (I'm not dead yet. Someone needs to tell the government that people aren't dying like they used to.) 

Monthly share of cost may apply. I get mine waived due to low income. Private insurance may do the same. You have to check.

The standard bed looks like this. 

A standard bed is provided where the head goes up and down. A mattress is there, unlike the picture. That hand crank controls the leg height. There's a separate head control that is done with an electric hand-held remote.

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If you are not sure about where your local medical supply is, ask the receptionist or a nurse at your doctor's office. They used to be the only place in town to get medical scrubs, the uniform we see. Other stores now carry them and I bet many people are relieved.

Some towns have more than one medical supply, and some towns don't have any.

There are medical supply stores on-line. I will use them if the deal is good and the shipping is low. You want to know where your  local store is, though. You may need something now!

Head Over Wheels

"Stand behind the wheelchair because I don't know if it has anti-tip bars," I told my daughter.

She got behind it and pushed down. The chair tilted back and went to the floor. 

Oh my!

This can be remedied. These bars are sold separately. A caregiver will want them with a total care patient. A person who has the ability to manipulate a manual chair may not need them and find them to be a hindrance. I am total care, but I talk and have my mental faculties. It presents an unusual situation. 

I got a new wheelchair for travel. I have an electric wheelchair. I don't have a wheelchair van. I don't want one. The electric wheelchairs are very heavy. You can't lift the one I have. A lighter, manual chair that folds to be put in the trunk of a car is needed.

It would have been nice if my new wheelchair came with anti-tip bars. It didn't have a seatbelt, either. I got that first. I'm getting a seat cushion next.

A conspiracy theory is going to develop about wheelchairs without safety devices. I don't believe that stuff. I think my new wheelchair is pretty and cheap.

I'll shop around, but 

I like these.

This picture looks useful.

OT Assessments

A & D Ointment

I hate rolling. I realized why when I was writing this. I once was rolled right off the bed.

When a person is unconscious, bedding and diapers still need to be changed. This is achieved by rolling the patient side-to-side. I have included a training video so you have an idea of this.

My eyes were open when this occurred. The rest of my body was unresponsive. I was beginning to vocalize words. 
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Right before I had brain surgery, I was at a long-term care hospital. It was in the process of being indicted. I had to return there for a few days before surgery. Upon my arrival I was changed.

The aide forgot to put the safety rail up on the other side of the bed. When he rolled me, he rolled me right off the bed.

Name Brand Removed

 He fixed me up good. Nurses carried packets of A&D Ointment at this place. Every bump and bruise I got was covered in A&D Ointment. I was plastered.

A&D Ointment is used for bedsores. That's why the nurses were carrying it. Different brands make it. I just used one for the picture.   It is also for minor cuts and burns. It is sold for diaper rash. It protects against wetness. As you can see bumps and bruises are covered.

I'm still in bed, but I lift for changes. This is called bridge or pelvic tilt. No more rolling.

Directly to the Stomach

Digestive System

There are no organs between the stomach and mouth. Food does not get any extra process. This is one reason to chew your food well. Another is choking.  You have to be able to swallow it in the first place, so you chew it. Chew it well or you'll choke. We chew our food for proper digestion and so we can swallow it.

The feeding tube gives us direct access to the stomach, but we are only bypassing the mouth. How do you feed someone who is asleep? 

I think of those old western movies where they tried to make an unconscious person drink.

Fortunately we have the feeding-tube now.

We have the pill crusher for chewing. I went to a place that used mortar and pestle. It's your preference. The pill crusher may be easier to find.

The mouth also wets the food with saliva. For that we have formula. It's just like formula for a baby, but made for an adult. A few are flavored. This is pumped directly to the stomach and doesn't need to be flavored.

Thank goodness we now have feeding-tubes or we'd be trying to wake people out of comas to take a sip of water.

I don't do my own feeding, but this gives 

good ideas, ones I did not know.
Yes, I have my own tube.

Keep Your Legs Working

I didn't have an exoskeleton. Years ago I did something similar. A brace was made for my right leg. It was a bar that came out of my shoe and went to my knee. A physical therapist (PT) and a PT aide helped me walk down a hall.

In the title of the video, the girl said she used her hip flexors. This goes back to a range of motion video I saw. A caregiver rolls the leg so the hip flexor doesn't freeze up.

Here is the range of motion video. It focuses on the lower extremities.

Range of motion is performed because "use it or lose it."

This paper centers on the lower extremities, which are needed for walking. There is upper extremity range of motion as well. Keep everything moving. You might need it later.

It Will Stick

You can click as some is hiding.

Reminds Me of ROM

ROM is Range of Motion. You want to keep your range of motion as you get older. If not, the body stiffens up and you can't move.

I saw the following video. 

It reminded me of when ROM exercises became active.  That meant I would do them. I'd use my good arm to move my bad arm. Before I did that, ROM was passive. A nurse or aide routinely moved my limbs.

 Use your good arm to move the other.

I saw this:

Radiation didn't make me glow.

"Stereotactic radiosurgey" is radiation. It's not just surgery. Radiation is the knife. This isn't regular surgery. 

To top it off, mine had never been done before. I didn't have to pay any money. Instead I had to sign papers that family could not sue if I died. I paid with my life. This surgery was a big gamble. I only had a 20-30% chance of survival. 

CLICK This video is on YouTube. 

It shows that beams of radiation were shot into my head.
Watch this video to understand my surgery. 
The radiation unit was mounted on a robot arm. There was no sliding.

 

This video wasn't available when I had my surgery, but you can see that it is from Stanford, where I had the procedure. A lot of this didn't happen with me. My surgery was before this protocol was developed, but a lot of the actions did happen in my case.

My situation was dire. That needs to be understood. 20% chance of survival was better than the current 0% that I had. I was living for almost two years knowing that I could instantly die if I sneezed wrong and set that thing off bleeding again. I had a vascular malformation in my head, not cancer. I had an AVM, an arteriovenous malformation.

I say that it was no big deal. I'm alive. I wouldn't be saying that if I was dead.  

Updated 7/27/2019

Basic Homecare

Basic Homecare, I will address what is in this folder and refer you to this blog as a whole since the G+ site is closing. Please join the blog. Know How covers many caregiving and therapy topics.

NUMBER ONE, BE SAFE!

I refer to my transfer, http://braininjuryknow.blogspot.com/2018/09/stand-and-pivot-transfer.htmlI
There are other ways.  Maybe you qualify for a mechanical lift. Your doctor or hospital can refer for training.

l used to use a sock aide. I have a video here.

.The fire dept is your last resort if your patient has fallen. Have a plan.

http://www.shieldhealthcare.com/community/caregivers/2018/04/13/what-to-do-after-fall/

 

Night Splint

Night splints- you are going to want something for the person who doesn't walk to wear in bed. The picture is just an idea. I had an all white one and now I have blue. You probably want a boot style with 2 or 3 straps. It has to be comfortable and easy to put on. Without something, bed covers can pull the foot down.

I cover the pressure sore, https://braininjuryknow.blogspot.com/2016/09/the-pressure-sore.html There are more than bed sores. They also occur in wheelchairs and from AFOs.

Don't expose your patient to germs http://braininjuryknow.blogspot.com/2018/02/no-germs.html

I last talk about my bed, http://thoughtfulveg.blogspot.com/2014/03/my-death-bed.html Hospital beds can be ordered by a doctor. They may not fit into a bedroom. Get creative and convert the living room or dining room. It's a good reason to redecorate.

My Stand and Pivot Transfer Tricks

It's usually called a lift, but if you do it just right, you are not lifting the patient. I'll give some of my secrets that on-the-job training did not give me. It mostly has to do with physics.

The typical person has a skeleton. You will be using the skeleton of the other person to bear their own weight. You don't bear the weight. Technically, you transferred the weight of the patient on to their legs. All you have to do is boost and provide a shoulder (or whole body) to lean on.

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The free videos I've seen are the proper way to transfer, in a hospital. Some of this does not or can not happen at home. Like I had one of those gait belts. A therapist left one on me and I came home. I don't know what happened to it. Homes don't come equipped with them and it might have been discarded. I never saw them in care homes.

They do save the clothes. When I say pull me back to my caregiver, I stand and the caregiver uses my pants. It does the job, but pants can rip. Belts don't and save the clothes.

**The transfer person's foot placement- IMPORTANT always have your foot in front. If not, you could both end up on the floor. If you are really strong, you may be able to transfer, but hurt yourself. I have a feeling this is what's happening to a lot of the family men and strong women.

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It's important to place the person's feet flat on the floor. You want them flat and properly spaced apart for standing. This is your foundation. What happens if you build on an unstable foundation? It falls. You will, too, if the feet aren't placed right.

Sit the person up. This is the first transfer of weight.

The person's legs should be able to bear weight. With the person sitting and their feet firmly placed in front, you are ready. If the person falls forward, the person is standing! That's all you do to get to standing. Help the person fall onto their legs.

This is where knowledge of the skeleton comes in handy. People have a leg joint called the knee. If you can, use your knee to push it back. This will lock the leg.

I wouldn't stand and dance, but you have enough time to turn and place the person in a wheelchair. Try the same action when going back to bed.

If bones are removed...

Submit Your Experience

Click to Enlarge

Having a Near Death Experience can take a lot out of you. Your muscles might not work. You might have frequent debilitating headaches. Your "mind"  might be wiped out. You just don't feel like it. It takes everything to communicate verbally with others just what happened. 

Maybe you don't speak anymore. I didn't at first. I had to come up with crazy ways just to get my point across. I was too involved to relate anything.

I put together some of the sites where you can report your experience. Someone else can do it for you, even. Just read the instructions. I'd have someone type while I talk. That's what I do with hand-writing. I will say what I want written.

https://iands.org/ndes/nde-stories/archives.html
IANDS is the big site.

http://www.nderf.org/ShareNDE.html
I got many recommendations for NDERF.

https://www.near-death.com/contact.html
I got one recommendation for this site.

http://www.oberf.org/forms/OberfShare.php
You never lost consciousness, but were physically aware the entire time of your experience use this link. 

These aren't the only sites. They were suggested. You may put others in the comments.

 

Breathing Correctly

I can't guarantee that you will be able to speak if your diaphragm is stronger. I don't know your specific case. It should help, though. Speech production is  getting air up and over your vocal cords.

This does help ward off pneumonia. It doesn't prevent it. -Angela

Not every case of not being able to produce speech is due to improper breathing, but knowing how to properly breathe can make a difference. The video comes from music. Voice training spends a great deal of time on this.

In the hospital, it is the respiratory therapist who is concerned about your breathing. My mother got a rather lengthy lecture. The speech person is the Speech and Language Therapist and is concerned with how you communicate with the world around you. Vocalizing may or may not be there. They may do sign language and other nonverbal ways to communicate.

When I first had my stroke, but before I could talk, I was put on a computer to learn how to indicate "yes/no" by using a special dot placed on my forehead, as I could only move my head. The dot operated a special mouse. I now use my left arm to type and I speak enough to get short messages out. Initially, I did not speak when I did that computer. I had to communicate in some way.

I have said before that I had a well-developed diaphragm before the stroke. This proper breathing video is that. It is breathing using the diaphragm.

 

 

I like the following video. The person who made it uses clips from other YouTube videos. I must have seen all of them while looking for that above one that I used. He also uses that one in this video.

Having a strong diaphragm may be why I talk now. Some doctors will say it is. I thought it was strong before I could talk. It was really only strong enough to keep me alive. Now it is stronger and I talk some. I guess I will be better when I can blow up a balloon. Yes, stronger breathing is something I still strive for.

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I once was hospitalized at Stanford for pneumonia. When I got better, they gave me a spirometer. The picture I found is the same brand. This one was followed by some numbers, so it must be a new improved version. I compete against myself, so I'd try to beat my previous score. 

The Voldyne Spirometer is sold on-line.