Since I have been in the rehabilitation facility it has been somewhat of a challenge to make sure that I don’t over exert myself. My treating neurologist would only approve my transfer here from the hospital if I agreed to comply.
The goal is to get functional. No strength training is prescribed at all. It will remain this way until I can show I am responding well to the medications. These include intravenous immunoglobulin fusion, steroids, and a regular dose of medication that contains acetylcholine, which helps deliver normal function to my muscles.
My attending physical medical rehabilitation physician also makes it clear that I should stop at the slightest hint of fatigue, since it was a myasthenic crisis that I was initially treated for before I came here.
The other precautionary measure is everyone entering my room must wear gloves and a mask. This is because Myasthenia Gravis is an autoimmune disease, and infection can cause symptoms that lead to myasthenic crisis. I am at a greater risk of infection now, because with an existing spinal cord injury I am already susceptible to urinary tract infections.
The signs of a myasthenic crisis are when the muscles controlling one’s breathing become too weak. In addition, someone with this disease may experience one or all of the following that can lead to a full crisis, and is encouraged to seek immediate medical attention:
- Difficulty swallowing
- Difficulty chewing food
- Slurred speech
- Double vision
I had all the above symptoms by the time I was admitted into the hospital.
I have only heard of a handful of people that have a spinal cord injury and Myasthenia Gravis, but I have never met any of them. To already have a paralysis gives me a new set of limitations. Exactly one month before I was admitted into the hospital, I was functioning from a very light titanium wheelchair. I broke it down and quite literally tossed it on the passenger seat when transferring into my crossover sports utility vehicle. Now, I am unable to tie my own shoelaces.
Coming back to the rehabilitation facility where I stayed after sustaining my spinal cord injury makes me feel I have a chance to gain independence again. My neurologist had mentioned to me that it is hard to know where the spinal cord injury ends and the Myasthenia Gravis begins.
The problems of an overly active bladder, and inconsistency in the bowel program that I have been on all these years, is the result of my pre-existing spinal cord injury. In my own experience, I have found that these are first to be addressed by a physical medical rehabilitation doctor that specializes in spinal cord injuries. Because I cannot move both my legs and require the use of a wheelchair, the Myasthenia Gravis has caused me to almost function like a quadriplegic.
The rehabilitation also includes the help of a speech therapist who will show me tips on swallowing, so that in the midst of fatigue I have a lower risk of choking. She will also be giving me tips to help the tongue from sticking to certain sounds when my speech becomes slurred.
My attending physical medical rehabilitation physician is the person who confirmed to me that this is a trauma. Therefore, every precautionary measure to help not exert energy is a top priority.
So, it is agreed amongst the doctors and therapists that their goal for me is to make sure I know how to do the following before I return home: take a shower, use the toilet, groom, eat, dress, and have the ability to relieve pressure whether I am sitting in my wheelchair or in my bed.
The first step is to implement a regimen where I am on an every day bowel program, rather than every other day. In terms of my natural well being, this will rid toxins and give me more energy, but functionally it will also lower my risk of accidents.
Switching from a self-catheterization kit to a straight catheter is what I do to be more sterile, since I can’t run the risk of infection. If I present further weakness in self-catheterizing then options such as, an indwelling Foley Catheter, or suprapubic catherization will be explored which fixed options.
The next issue is the fatigue in my hands. Neurologically, it is not symptomatic of Myasthenia Gravis to have the muscle weakness in my fingers and fingertips. However, because of the fatigue all over my body, there is an obvious change in the use of my dexterity muscles. This especially affects me when I am eating and drinking. To help this problem, the occupational therapist directs me to a set of beautiful cutlery. There is an additional piece at the tops of the fork, knife and spoon, which wrap around my thumb and finger. This allows me to hold my cutlery with ease, and eat without spillage.
The other difficulty I have is brushing my hair. So, the occupational therapist will add an extension to the end of my hairbrush. I won’t need to lift my arms too high in order to complete this task.
The facilitator of the support group for Myasthenia Gravis suggested a mechanical toothbrush which helps combat fatigue while completing this simple task.
In terms of chewing and swallowing, the speech therapist shows me to drop my chin down to the center of my chest. When I swallow, the food is more apt to go down without the risk of choking. According to the pulmonary physician at the hospital, it is even more important to be cautious that food does not go down incorrectly, because this is also a way to get pneumonia. Having a condition like that can also put me in a life-threatening situation.
The speech therapist also recommends switching to soft foods until I get better. This will definitely prevent choking, as well as resolve the issue of having food sticking to the inside of my mouth.
I also receive a grabber to help me pick things up in hard to reach places, and a new super light transfer board. It is recommended I use this all the time to help conserve energy.
Sliding in a downhill motion from my wheelchair when transferring on to another surface helps conserve much energy. Being in a manual chair is different - transferring requires more pushing, shifting and pulling, as well as, replacing the legs. However, in switching to a power wheelchair, the hard work is already done for me. I now have the ability to elevate my seat higher than the surface I wish to get on to.
Not having the strength to pull myself up into a sitting position when I am in bed also affects my ability to dress. A nylon ladder made out of heavy-duty binding tied to the foot rail of my bed allows me to pull myself up to a sitting position. This then allows me to have the independence to dress myself, including putting shoes on my feet.
The purchase of a commode shower wheelchair to replace the shower bench I have at home cuts the amount of transfers I will have to do in order to get ready each day. The chair also comes with bars on the side for extra stability. In addition, the use of a long handled sponge in the shower also prevents further fatigue.
As I continue to take the medication that treats Myasthenia Gravis, I will no longer need the added assistance of an attendant.
Although, the more bathroom equipment I need, I realize further modifications must be done to my master bathroom at home.
After several estimates my husband and I find a contractor who can meet our practical and financial goal. He is able to knock out existing walls for easy access to the commode and shower, smooth out the flooring, and install pedestal sinks with easier reach handles. The cabinets will be placed beside me rather than underneath me also for easier reach. We’ve also agreed to strip the carpet in the master bedroom and replace it with laminate flooring.
When I return home, I will have to purchase ramps to cover the lip on the back door, front door, and garage door because I am using a power wheelchair. With the manual wheelchair, I only had a ramp in the garage and popped a wheelie over the threshold of my back and front door to enter or exit.
The therapists and I have also discussed the necessity of practicing opening doors while using the power wheelchair.
Even though we are cautious about fatigue, one of the things I do have to be sure to continue incorporating in my daily routine is range of motion exercises. Now that I have the ladder to help assist in pulling myself up in bed, I can continue to get the stretches and movements my legs need to prevent stiffening, and help combat spasms. It also gives me an opportunity to check my skin for any pimples, bumps, or bruises along with the use of a long bendable handled mirror.
The biggest bonus is receiving tips from the people I had met at the support group for Myasthenia Gravis in Houston. The common denominator to our plight is that we adjust our thinking in order to continue doing things, but in an easiest way possible.
Most importantly, I have realized once again in my life of having a disability, that it is hard to take things for granted. Being able to do the simplest things can create independence. Along with independence, we also attain hope for an easier future.