Archive for the ‘Medical’ Category

Standing Around

Thursday, July 26th, 2012

Today, I resumed doing a standing program. A standing program is where a person that normally uses a wheelchair, uses a device called a ‘standing table’ or ‘standing frame’, to get into an upright position and stand in one position for a length of time, slowly increasing the time they can tolerate being able to do so.


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Washington State’s new Pain Medication Law

Saturday, June 23rd, 2012

Washington State passed a law to curtail the rampant overuse of opioid drugs to control chronic pain. Good in theory, not so good in execution. The theory, was to control the doctors that are overprescribing such drugs as Morphine and OxyContin. Doctors were writing prescriptions left and right for these drugs to people that were on workers compensation for injuries. And this is the right thing to do…. but then there are the people that have a disability that causes pain, chronic pain. And to function, they need something to allieveate that pain. Me, I would rather take the minimum amount of pain medication that I can, and still remain functional. I do take a bit more than the minimum… I do not over-medicate, but I also don’t ‘grin and bear it’. I medicate so that I my pain is managed to a great extent. Say 80-95% of it… If I don’t do anything unusual, I can function very well, and do not feel any pain at all, as long as I take pain medication on a schedule of every 12 hours.

However, my doctor has thrown me a curve ball, he wants me to start walking. I STOPPED walking because of two specific things. It hurt, and it cost me a lot of energy. Imagine yourself (if you’re a non-PWD), walking on a tightrope stretched between two buildings. I use up THAT much energy when I walk the same distance. So if I were to talk a block, it would be like someone not disabled walking a block on a tightrope stretched between two buildings. Once I use that analogy, most people look at me and say that they totally understand why I use a wheelchair. I’d be in bed all the time otherwise, and exhausted. I wanted a life, so I stopped walking 27 years ago, except for my wedding, 20 years ago.

Paralyzed woman serves herself coffee for the 1st time in 15 years!

Friday, May 18th, 2012

A woman paralyzed 15 years ago, served herself coffee via a thermos and a straw. What’s so news worthy about that? Well, she’s a quadriplegic and she used a robotic arm that picked up the thermos and moved the arm by thought, via the “Braingate” interface designed by John Donoghue, a neuroscientist who pioneered the Braingate interface a decade ago.

It has gone from a quadriplegic being able to move a cursor on a computer screen to operating a robotic arm to serve coffee out of a thermos. This technology is amazing.

The woman also communicates via the interface by looking at a computer screen and highlighting each letter. The technology is still a long way from general use, but it is doing very well for trials in helping understand that the brain is still functional years after a brainstem injury.

Check out the article below and please watch the video:

Paralyzed woman moves Robotic Arm via Thought

Another company is using a robot to help the disabled… a man was able to give himself a shave with the use of a robot.

Robot helps quad shave himself

Transportation Update

Monday, March 26th, 2012

I called to get signed up for the Transportation service, and found they only have one van. I offered the use of my lift equipped van to transport me to my various outings so they don’t have to take their van to transport me, since I only need a driver. The person on the phone was going to talk to someone at a meeting tonight about my suggestions. Being that I’m so in tune with disability law, and how things work, I could make suggestions to ease their burden of helping and get service for myself as well. Yeah, I want to use their service, but I don’t see any reason to take their van when mine does just as well. No one else can ride with us, but that’s okay, as long as I pay for my own gas.

Walking… it’s overrated!

Tuesday, March 6th, 2012

Saw my PCP (Primary Care Physician) yesterday, and he wants me to start walking. I haven’t walked in over 27 years. When I was 21, I decided it hurt too much, and took too much energy to walk, so chose to use a wheelchair, much to the dismay of my parents. They thought I was giving up. Well, THAT didn’t last long, as my Mom took me shopping, and instead of being tired and complaining of being in pain ten minutes into shopping, it was 4 HOURS before SHE was asking if we could stop and rest. And when I needed a new wheelchair, my parents bought me a nice one, not a real cheap one, like the one that I got from DSHS.

Now, Dr. Khan, wants me to start walking. He’s written a prescription for me to go to PT (Physical Therapy) for four weeks. I seriously doubt I have the muscle for it. I’m sure the muscles have atophyed after so long. Even walking across the room will cause me to use so much energy that once I’m done, I’ll be so exhausted, I’ll be sleeping the rest of the day.

I don’t know what I’m going to do. I’ll go to PT, but walking just isn’t worth it to me… I don’t want to be in pain and exhausted. I have a life now, and while I’m still in pain, it’d be a lot worse if I was walking.

I have Lymphedema

Sunday, October 2nd, 2011

The vein condition that has been plaguing me for the last year or so has finally got a name. Lymphedema. And I’ve finally gotten some expert help. No, “Here’s some compression stockings, you’re on your own.” (which is what happened when I was first diagnosed).

Nope. During my last intrathical pump refill, Dr. Nutter, (see previous journal entry) took a look at my swollen and mishappen feet and sent me to Good Samaritan Hospital’s Lymphedema clinic. I start twice weekly visits this week. My first visit was last week, and I was given a packet of information to read and I was told a ton of information.

What is lymphedema? Basically, it’s the collapse of a section of the body’s lymph node system. The lymph nodes carry out the garbage that is filtered out of the body by the blood and into the kidneys. When the lymph nodes don’t do their job, the crap, gets stored in that section of the body and STAY there. The garbage doesn’t move out and into your kidneys to be flushed out like it’s supposed to. Lymphedema basically means that the crap stays in the veins and it’s caused my legs to become huge and misshapen (especaily at the feet). In layman’s terms, it’s the collection of fluid, in the arms and legs. It only effects my legs, however.

The treatment is massage, and compression garments (first, ace bandage type wrappings, then custom ‘garments’ (that basically wrap around the affected part (in my case, my lower legs) to squeeze the blood back up into my body. Which then dumps the crap inot my kidneys and then flushes it out of my system. I can see lots of bathroom runs in my future. The “basic kit” costs over $100. Insurance will not cover it. And each visit for getting my legs wrapped and massaged as a co-pay of $30. At least the kit is reusable. Keith will need to learn how to wrap my legs, so we can save $30 a week, otherwise, I’d need to go in a 3rd time, to do this, as I’m supposed to do this every 2 days. Someone on Facebook suggested opening a bank account so that people could donate money to help me. I don’t like asking for charity, but $60-$90 a week is more than I can afford. However, I won’t be able to open a bank account. Keith would never allow it. So, if someone wants to do it on my behalf… send me a message, either on Facebook, or via email (danawheels@gmail.com). I check emails frequently. (I finally got Outlook 2007 running).

A Doctor Extraordinaire!

Thursday, August 4th, 2011

I have the most amazing doctor… Dr. Paul Nutter handles the administration of my intrathical drug pump. The hockey puck sized device that delivers baclofen into my spine to relieve the spasticity that causes me to not be able to move hardly at all.

Why is he so amazing? I take Pierce Transit’s Shuttle to my pump refill appointments each month. Because of budget cuts. Pierce Transit is eliminating bus service AND Shuttle Service from where I live, basically stranding me at home I will only be able to go to appointments when family has the time to take me. I explained all this to Dr. Nutter explaining that my mother in law has days off that are NOT the same days as pump refill days and wondered what to do… turn off the pump, theeby causing me to not be able to move? Well, before THAT statement was out of my mouth, I had commented on what days off my MIL had and when she could bring me in for a pump refill, so he is using his LUNCH HOUR to refill my pump I don’t know of any other doctor that would do that.

Sleep Apnea

Monday, April 18th, 2011

Well, if it weren’t enough that I have to deal with Cerebral Palsy, I have been diagnosed with sleep apnea.

Sleep Apnea:

Sleep apnea (or sleep apnoea in British English; English pronunciation: /æpˈniːə/) is a sleep disorder characterized by abnormal pauses in breathing or instances of abnormally low breathing, during sleep. Each pause in breathing, called an apnea, can last from a few seconds to minutes, and may occur 5 to 30 times or more an hour.

There are three types of sleep apnea:

1) obstructive sleep apnea (OSA)
The it is caused by a blockage of the airway, usually when the soft tissue in the back of the throat collapses during sleep.

2) central sleep apnea (CSA)
Unlike OSA, the airway is not blocked but the brain fails to signal the muscles to breathe due to instability in the respiratory control center.

And a combination of Obstructive and Central Sleep Apnea

3) Mixed or Combination Sleep Apnea

And not just any sleep apnea, but the most rare of the 3 types.
*Information about Sleep Apnea was taken from WebMD (http://

In looking at the symptoms of Sleep Apnea, I wonder how I never came across this diagnosis before, as I experience more than one of these symptoms!

Common sleep apnea symptoms include:

    Waking up with a very sore and/or dry throat
    Loud snoring
    Occasionally waking up with a choking or gasping sensation
    Sleepiness or lack of energy during the day
    Sleepiness while driving (I don’t drive, but I have fallen asleep RIDING in a car)
    Morning headaches
    Restless sleep
    Forgetfulness, mood changes, and a decreased interest in sex
    Recurrent awakenings or insomnia

The treatment for sleep apnea can range from life style changes such as losing weight to machines that alllow for a continuous airflow, called Continuous Positive Airway Pressure or CPAP. There is a level above CPAP, BiPAP, for BiLevel Continuous Positive Airway Pressure and I’m actually on Assisted BiPAP. Basically it’s all controlled by a computer, The computer monitors my breathing and adjusts the flow accordingly. Ain’t that just special?

Sorry, sarcasm isn’t going to to change the facts. Basically, I have had a major shock to my life, and now I have been told to deal with it. And to deal with it, I’m going to be strapped to a machine at night for the rest of my life.

So, my memory problems haven’t been from been overmedicated, they’ve been from the sleep apnea! Sheesh! I can’t wait to tell one of my doctors this and see what his response is! Maybe he won’t be trying to get me off all the pain drugs, which is basically putting me through hell.

All of my symptoms that he’s attributed to overmedicating are also symptoms of sleep apnea!

I am still feeling my way with the system. I lost a small piece of the mask a few days ago. Hopefully, I get that replaced tonight and I’ll get it woring. Without that small piece ther was a lot of gaps so it wasn’t sealing the mask correctly, so it wasn’t doing much. So I didn’t wear it for 2 days. I hope tonight that will change.

Trying to do the right thing

Thursday, January 27th, 2011

Because of my disability, I take pain medication. NARCOTIC pain medication. This means I have to go see my doctor every month for refills. Well, the last two months I’ve run out, and that hasn’t been fun. Two months ago, my doctor called in sick, and last month, I don’t remember what happened, but I couldn’t get an appointment, so I ran out.

I just called to see if I could get an earlier appointment and the nurse would not give me an appointment earlier than the 14th of February, as I had been seen on the 17th of January. She didn’t like my tale of running out of pain medication and would not give me an earlier appointment. I do not buy that she couldn’t find an opening before the 14th. When I told her Monday or Wednesday only, she then kept trying to get me on Friday the 11th. Who wasn’t listening then? So, now I have an appointment on the 14th, when I’d rather have one on the 7th or the 9th of February.

I have never abused my pain medications and only wanted a buffer in case something happened. Is that too much to ask? Especially since I ran out of medications 2 months running? I will be discussing this with my doctor and making my appointment for March when I leave the office on the 14th.

Sleep Study

Sunday, January 23rd, 2011

I don’t sleep well, and I know I need to finish a sleep study (usually one night, but sometimes two), because I was put on C-PAP, and I may be placed on B-PAP instead, and they need to figure out WHICH to put me on. That will help a lot with my sleep patterns. I guess I stopped breathing often enough that I was put on C-Pap within the first 2 hours.

But, I started going to the one near the University of Washington Medical Center in Seattle, and I want to go to the one near my home. I have an appointment on the 16th, at 8:30am for an evaluation. I think I may have to change that appointment time due to Keith being in DC. Gotta check the calendar.