You Put Your Right Side In

I feel like I am playing a perverse game of the Hokey Pokey. First I had to put my left leg in, and my left arm in. Now I am putting my right arm in and my right leg in. Hopefully sometime soon I will turn myself about. Is that what it's all about?
Today in therapy I was able to move my right foot all by myself. This is the first time since the hemiplegic migraine that I was able to  move it forward without assistance and clear the floor (ever so slightly but I cleared the floor). Yesterday the therapist had my foot on top of hers to take steps and pushed my foot along with hers. Today I was able to lift it just off of the ground enough to move it forward. I am also working on getting my foot to move, both opposite of my left foot and together with my left foot. Any movement is good. I purchased a very cheap Kindle Fire online and am using it as motivation to use my right hand even just to slide across the screen with a finger or touch with an isolated finger, things I need to work on right now. As I progress I can download games that require more finger and hand usage.
My perspective for today is that while I may be physically falling apart, I am blessed to have my mental abilities. There is an elderly gentleman parked in his wheelchair in the hallway outside my door where he can be watched for his own safety. He made it from his bed to outside in under a minute and it is freezing cold out today. Thankfully there are alarms on all of the doors. He is considered combative and right now is sitting in his wheelchair having removed his gown and trying to disassemble his oxygen machine. He will be having someone sitting one on one with him for the night to help keep him safe. This is very uncommon in a place like this for them to allocate staff for a one on one situation and probably will not happen again. That is why he is out in the hall, so he can be watched by current staff. He desperately needs individual attention, a dedicated aide, and a safer place to be where he cannot easily get from his room outside. Yet this is the best that his family can do for him right now and that makes my heart hurt for him. Carrying the gene for early onset Alzheimers disease it terrifies me to see how those with dementia are warehoused and treated in our country. We need better options, we need better services, we need better places and people and ways to treat those in need. We can do better and we must do better.

Reflections One

I have not written an update in quite a while about how therapy is going. It is a hard three hour work out each day and I end up exhausted by the end of it. I push myself to do more, stronger, harder sometimes to my own detriment. I just want to get back to normal as soon as possible The rehabilitation doctor was in today and said I had a few more weeks to stay here. One day at a time.
Below are some things I have been doing in physical therapy.
* Kicking a ball (not soccer star, more like uncoordinated toddler)
* Opening my hand enough to pick up soft squishy beanbags
* Leg exercises (extending legs, marching in place while seated, rotating feet as much as possible, etc.) with a pound weight on each leg (the weight seems to help me be more aware of my leg and move it easier))
* Working on balance by sitting on the edge of the table/mat and reaching forward to place objects on pegs or to roll a ball
* Shifting weight into my left leg
* Raising my left foot high enough, and properly, to place it on a step
* Getting myself dressed and taking care of daily needs
* Practicing standing balance by standing with support and a walker and shifting weight from side to side or front to back
* Riding the exercise bike thing from Hell (not recently as my lungs have been bothering me)
* Working on swallowing different textured foods
* "Walking" with a walker and support about 30 feet (my left leg drags and does not pick up to step yet)

Sometimes I do not see the successes but looking back over it I have come a long way in two weeks. When I arrived I could not move my left side at all really. So there has been progress, hard progress, frustrating progress, slow progress, but progress.

I still have my migraine but now finally have pain medicine for it. So hopefully it will at least be controlled if not broken. I also started on breathing treatments 4 times a day because the Mitochondrial disease is making it harder to breathe.. It feels like the muscles in my diaphragm are week and difficult to work, making each breath an effort. My lungs also get tight. My pulse ox stays high enough to be safe, but it is exhausting and painful. The nurses and physicians assistants would not listen to me or understand, but the doctor knew what I was saying and was willing to do something about it. I am still waiting for something for sleep. He does not feel comfortable adjusting or adding medicine because I am on a lot of "psychiatric" medications (One is used for my muscles from the dystonia, the other is supposed to help me sleep) and he wants the psychiatrist to decide what to do.

I am getting used to having a roommate after over a week of a room to myself. She is a sweet older lady, but there are some issues. She must be hard of hearing because her TV is always set to jet engine loud. She is also incontinent and struggling with diarrhea which makes for late night visits from aids to clean her up, and oh the smells. But she is kind, and she provided me with information on a way for my Mom to be able to visit me here (the city buses do not go this far and neither one of us can drive). I am hoping to see Mom on Christmas Eve.

By Its Cover

I usually try not to judge someone without knowing them and spending even a little bit of time with them. However, last night I totally looked at the cover without seeing the wisdom in the pages. I received a roommate (they were switching rooms around all day) and my first impression was that she was rude and deaf (her TV was up so loud for my headache). Then a visitor had a tantrum because I have a tray table between her bed and mine. I am allowed two tables because I cannot life and move my laptop every time I need a surface to eat or color or whatever. I am very careful to turn it tightly but this woman was just going off. Finally I discovered my roommate is incontinent and has the world's worst diarrhea right now. Oh the smells alone almost did me in. But then this morning I was able to meet her. We talked for a little while and it turns out she is a delightful woman. She even helped me find a way for my Mom to visit me while I am here.I was so mistaken and judgmental that I am ashamed of myself. I needed to relearn that lesson and this sweet, kind woman has taught it to me.

I have the Right...The Right...

Today (Tuesday) I hope to meet with a social worker as I have requested. There are several issues in terms of care that need to be addressed. I have the right to go to the bathroom when I need to, not an hour or more later. I have the right to not be ridiculed to my face or behind my back. I have the right to access my doctor when requested, instead of being ignored. I have the right to make my own choices about what I do and when I do it. I have the right to freedom of speech and to be heard. I have the right to know my own body better than anyone. Yet none of these rights are being fully given. The sad thing is that this is an average nursing home/rehab facility (definitely not the worst) and many people do not even have the ability to know or state their rights. I do not think I am asking too much or being unreasonable. I want to have dignity, self determination, access to proper medical care, and respect. I want to be treated as a human, not bed 205 or my diagnosis.

The Lion Sleeps Tonight

In the Jungle, the Mighty Jungle, the Lion Sleeps Tonight

I am jealous of that blasted lion. Another night I am too restless, out of sorts to sleep. Another long night of trying to pass the time and trying to sleep every so often.. I have slept one night since I have been here on December 7. The rest of the nights have been spent awake. So during the day after therapy I collapse in exhaustion. Thankfully tomorrow is a day off from therapy so I can rest all I want. Well not really. They really try to get you awake and out of bed here as part of your recovery. My energy depleted self, with cells that do not properly produce energy, has its own limitations. I need the doctor to write for something for this headache that gets worse at night, and for anxiety or sleep. He said he would but then never did. I would give almost anything to be able to sleep.
Speaking of sleep, a lot of the elderly people here go to bed so early and wake up at still dark O'30. They start getting out of bed and getting ready for the day at 5 am. 5 am is not a time I like to see. Neither is the 6 am when they wake my butt up if I manage to fall asleep for a few minutes. Just one morning it would be nice to hold a sleep in - when everyone refuses to get up before a decent time. A minor revolt, a stand on the right to sleep. I may stage a one man revolt tomorrow.

A Man is Not an Island

Today was the facility's Christmas party for families and residents. I attempted to go, but when the music started my migraine began to let me know it was not down for a Christmas sing a long. But while I was there waiting for it to start I noticed a huge divide in the patients. It is something I have noticed here before. It is not a divide based on ability, cognitive function, or behaviors. Rather it is a divide based on who has family that visits and who does not. Today the results were about half and half. The families that came were loving and caring and excited to visit. Those without visitors sat quietly at tables with others without visitors, looking around at all the new people in the room. I can't say if they were all sad, but it broke my heart. I cannot receive a visit from my Mom this holiday season, but I am only here temporarily. For those who live here or are here for a long time it must get lonely. I wonder if they feel forgotten, lost. Even if they cannot communicate, who knows how much they can hear and feel and know, My friends have showered me with love and support and that has made a huge difference.

Reality Check

I have an unknown Mitochondrial disease. This means that the energy production in all of the cells in my body is not proper. It can cause a lot of unpleasant symptoms and limitations, including death. The reason it is unknown is because my DNA came back abnormal for mitochondrial disease but not in any pattern they have seen before. Yes, I have to be an original. Along with those DNA changes are associated changes for a high prevalence of Bipolar Disorder and Early Onset Alzheimer's Disease. I already have Bipolar Disorder. Being here has faced me with the very real possibility of what my life would look like with Alzheimer's disease and it is not comforting. I do not want to lose all of my dignity, my value, my worth, my humanity, my individuality by living in a place like this. It is scary enough to think about slowly losing memory and body function. In Early Onset Alzheimer's the disease usually lass longer because the body is not yet changed by age. I have a profound appreciation for what these people's lives are like and would love to find a way to make them better. I want change for if this happens to me, but also for those to whom it is already happening.

The Sound and the Fury

Many of the residents here have difficulty communicating. There is a sweet old man (I think) who likes to hold my hand and give me high fives but no matter what I do I cannot understand a word he says. I cannot imagine the frustration of trying to talk and having it come out garbled or not at all. Some people here are really patient about speaking with the residents, but others just pretend to listen then nod and carry on with whatever they were doing. I can communicate. I can make my voice heard. I can speak for myself. I can have a mini temper fit like I did this afternoon (long story) and be understood. When someone who cannot speak clearly works so hard and cannot be heard, can not speak for themselves, can not be understood I can only imagine the frustration.The least we can do is try our best to hear them, to give them a voice, and to understand when they get upset over you not understanding them. I pray that i never lose the ability to communicate, but if I do I pray that someone will take the time to hear my voice.

A Rose By Any Other Name...

A rare two posting night. :) I cannot sleep yet because of my headache and this observation really hit home tonight.
It is very easy to view the elderly as being child like. Often they are spoken to or treated as if it is assumed that their cognitive abilities have all but vanished. No one here has Dementia (not on the two wards I use) but the way many people talk to them you would never know. I had to do an assessment for recreation services today, and one of the questions was what important information I wanted them to know. I specifically had her write that I am highly intelligent and detest having people talk down to me or treat me as a child. I just hope they can follow that.
My big revelation this evening is how patients are talked about without them knowing, even in front of other patients. They literally have very inappropriate nick names for several of the residents that I know of. They laugh about these people and find humor in their limitations. As a former preschool special education teacher I would never have talked about my students like this because no matter what the challenges are they were first and foremost children. Here it should be that patients are first and foremost human beings. I know some people can have a difficult personality, or an annoying habit but that is no reason to demean them. Dignity can be a very rare thing around here.
Is this how we want our elderly to be treated? These people are mothers, fathers, sons, daughters, sisters, brothers, friends. They matter to someone. I was raised to respect those older than me, even if just by a little bit. We have lost this manner in so many ways. It breaks my heart to see and hear it. I am so thankful that this is not my home, that I get to go home and go back to a life where I will have dignity, respect, appreciation, love, and belonging. But for so many this is home and they do not get to return to a life of respect.

Boot Camp

Today was my first day of therapy. And all I can say is that they kicked my A$$! I was there for three hours of hard work. It is amazing how hard it is to make such small movements right now. I did get to stand up with assistance and work on putting some weight on my bad leg. We are also looking at getting me a new set of AFOs (ankle foot orthotics) to help stabilize my legs. I also now have a splint for my left hand to keep it from curling up so tightly. I am to wear it as much as possible during the day and all night. Let me tell you that typing one handed is exhausting and time consuming. So if some of these posts are short that is why. My therapists are incredible and totally rock. They push me but not to the point of significant pain or exhaustion.
What impressed me today was watching the elderly patients (I am the youngest here by probably 30+ years) who are working so hard to gain or maintain skills. No one complained the entire time that I was there. One man whom I believe had a brain injury at some point and now lives here (He is in the residential unit) actually refused to leave until he completed a specific exercise. Everyone was at their own ability level and working on their own needs, but we all respected each other's battles.
After therapy I decided to be brave and join in one of the scheduled activities. I was with a small group of old women and they were so nice to me. We made Christmas cards and craft gingerbread people. Several of them could not write, and it was so nice to be able to help even one handed. It was an activity like I would have done with my preschoolers but still fun and a nice change of scenery. But sitting up for even longer wore me out. By the end I was slumped to the side and raced at the rate of a sick snail back to my room.
I also ate in the dining hall today for two meals. Old people get stuck in their ways and do not seem to like change. I tried to roll up to a table with three sweet looking old women and was told that the spot was taken - by someone not there- and I needed to move. I will get to the cafeteria early when I choose to eat there (I can also eat in my room) so I can start at an empty table and let them choose whether to sit with me or not. The ladies at the activity were much nicer.
My migraine still has not gone away. It is tolerable during the day but gets much worse at night and in the early mornings. I have no pain medicine for it, as the theory (and I call it a theory) is that pain medicine can actually cause it to rebound worse. I for one am willing to take that chance. It has to end soon...right?

Blindsighted

Late on Wednesday night/early Thursday morning I was having difficulty sleeping. At around 3:30am I just felt majorly "off". By 4am I had noticed my left arm and leg were numb and tingling. By 4:30am I had an intense headache and significant weakness on the left side. It was then that I decided a trip to the Emergency Room might be a good idea. As soon as I got there I was evaluated for a stroke and "qualified" (do I put that on a resume?) and they called a code stroke. It went from one person in the room with me to half the dang ER. A CT scan was done and normal. I then teleconferenced via this cool robot with a neurologist on call at another hospital since I live in small town nowhere. It was decided that I needed to be transferred immediately to a larger hospital with better staff/treatment options/testing. After a long 45 minute ambulance ride, I arrived at the big hospital. I then spent from 7:00 am until 6:30pm in the ER. Um, I think that is a personal best (worst). They did finally move me from a curtained section of the ER to a private room which I and my headache appreciated. During all of this time my weakness progressed and I lost sensation on my left side. The vision in my left eye also became impaired, with no peripheral vision and blurry vision. I met with the neurologist the next day and it was decided I needed an MRI to detect any stroke, swelling, or metabolic changes. The MRI sucked because it was so loud, but I did get to listen to some good music. Apparently the MRI came back normal. The doctor then decided that I was having/am having a hemiplegic migraine. This is a migraine which causes one side of the body to behave as if there were a stroke. He tried IV Keppra and Magnesium to break the migraine but neither one offered much help. At that point he felt that I could and should go to rehab (an aspect of a nursing home) and I would have to wait out the migraine and hopefully recover use. It is now almost a week later and I still have the freakin headache (it is worst at night and early morning), and my left side is in rebellion against me. Today I have my first sessions of therapy (PT, OT, Speech) and a big meeting to discuss my plan of care and such. Yesterday was a day of assessments.
Because I am far from home and my mother cannot drive, I had no clothing to bring to rehab with me. They found me a couple items to borrow from the laundry (they save clothing people leave behind- function way over fashion here). I have the most amazing friend who is sending me the clothes and personal items that I need as well as some entertainment and time passing items. I am so blessed.
I am hoping to get a better insight into how we treat the elderly in America, a new perspective on illness and age, and to continue to document my recovery (both the humorous and difficult).