Some of the retraining is not for the person with MSA but for the people around the person with MSA. Even after so many years of being someone with MSA people including family will still ask what I have exactly. Hopefully one day it will have enough awareness that I can tell the bus driver I have MSA, rather than something like MS, which is just a way to not get into lengthy chats. Because of the orphan status you have to tell people what to expect and what you need, they cannot know. For me that meant learning to say no to things they would propose out of the goodness of their heart but that were nightmarish for me.
I cannot handle even small crowds. All voices are given equal time in my brain which means for the most part I cannot follow any of them and my brain just phases out. I am happiest one to one. Eating in public is out, no fun for me. I do get a strange joy out of browsing in large stores not to buy anything but just to look and stare at stuff. Beats me why, but I find it soothing, so coming along to ¨shop¨ is something I do enjoy. I very much enjoyed going skating with my daughter´s family last year even though I cannot skate. since I fall while walking, falling while skating is not such a stretch. I took a couple of good spills, but I am not brittle and bruises clear up. It was so nice just feeling normal for a couple of hours. I wanted to keep going but my wise offspring said no, she was so right.
That brings me to payback days. One day attending a celebration will definitely put me in bed for two days. Our four day trip to Vegas put me in the recliner for a week and a half. that is one of those things that I cannot see ever changing. I have tried diet changes, vitamin therapies, none of that made any difference. I do now rest the day before any sort of event, and make no plans for two days after, that works well for me. some things like someone else”s hospitalization will throw a wrench in the works and there will be some payment in time and health, but what can you do?
Stress, good and bad will take a toll and life rarely just coasts you along. When my cat died a few weeks ago I was suddenly falling all over the place, bouncing off the walls and having memory lapses. Once the routine returned to my life the falls were less frequent. I definitely no longer make promises to anyone, because there is a good chance I might have to break them so better those promises are never made, The people around me are used to what seem like stupid questions. I have to ask if it is cold or not, I cannot feel it. I have to ask what color my yarn or embroidery floss or paint is because there are days I cannot see color well or at all, it comes and goes. I smell things that are not really there, and I see things that aren’t there. things like the giant hedgehog with burning eyes on someone´s balcony, which turned out to be a discarded Christmas tree and reflectors. There was the man carrying a striped cat, which when I looked the second time turned out to be a man in a striped ( think Dr. Suess) hat. Again it illustrated the brain trying to compensate for poor processing forcing us to make judgements which are wrong. After a few such occasions you learn to do a double take, never trust the first impression, especially if it seems odd.
fire eyed hedgehog or??
I have been painting professionally since 1983, when my dance career was slowing down, it came easily to me and I cannot, not, be creative, that would crush my soul. MSA has an impact, if I tire my hands start to shake, and I drop things, if my attention goes elsewhere my hand lets go off whatever I am holding, so lots of paint spots on the floor where I´ve dropped my brush. so got some cheap stretch gloves, cut off the fingertips and took some adhesive Velcro strips placed so the brush with complimentary strip of Velcro would lock on, presto, no more dropped brushes.
To walk a straight line without falling over I need focal points, much like skaters and dancers use when they spin. In my neighbourhood along where I usually walk I have found and committed to memory those focal spots and as long as I am looking at them and minding my feet and lifting my feet a little higher than normal (tendency to drop my left foot) I can look like I know how to walk. I now rarely hear comments such as ¨drunk at eleven in the morning¨ muttered behind me. I use the posts at the intersection when I step down, and most days I do have my shopping buggy with me. Walking down hill is much easier if I keep my knees slightly bent – I am hyper-extended. Since I was mugged I have become painfully aware that if you look weak you make someone´s short list.
My mornings at the gym have given way to late afternoons in the recliner doing my adjusted Charles Atlas Dynamic Tension Exercises – along with some seated yoga and Tai chi. there are just fewer and fewer days I manage to do exercises standing and there is not enough room in this place to use the floor, besides getting up without a hand up is nearly impossible these days. The tension exercises work for me and I don’t have to worry about insufficient heart activity or blood pressure. I try to get some done before 5 pm which for some reason is the magic time for me to start my spasms. first in my feet, then my calves, a few bonus Charley horses, and on bad days my neck and jaw join in. Some days I cannot help but be out doing something and then there is the fun of walking, or trying to with the cramping and spasms. If it is really severe I keep a little cramp dust handy (opened up a sleeping pill into a small container just a very small amount will lessen the cramps without making me sleepy. I know there are anti-spasmodic but for as long as I can do without, the better. I remember the day, the very day that exercise as I was doing it every day at the gym, stopped being a good thing. I was lifting weights and without warning my hand let go, and I could not pick it up again. A few weeks before that I had failed to be able tp push open the garage door, something I could do before with ease. These days I expect it, but then it was shock upon shock. I fought it and kept trying, but was finally asked to stop coming to the gym. They might have thought I was drinking too, and it was well before I had a diagnosis.
There is type of memory we have in our musculature. It is why people who have been in fabulous shape can make faster gains when returning to working out than people who have never been in particularly good shape. There are also triggers other than working out. For me it is the music I used to dance to and watching other people perform, especially choreographies I am personally familiar with. I noticed a friend of mine after watching a football game was looking tired and I asked if his muscles were sore, they were. Exactly how I feel after watching a ballet, or an old musical. the next day I am sore. My computer is next to my recliner and I sometimes watch ballet on Youtube, for both the joy and the workout. Figure skaters also have this sympathetic work out.
One area where I have utterly failed to regain any control is the ability to sleep. Other than the four or so hours afforded me by taking a benzodiazepine, I do not sleep. For several years before a doctor finally ( and reluctantly) agreed to prescribe them, life was a nightmare. I could not sleep, and the longer it was between sleeps the worse all my symptoms became. I had blackouts, found myself in strange places, I had taken money from the bank but the money was gone, I lost consciousness at the most inopportune times. I was shaking head to toe. I finally told the doctor it was sleep medication or I would take a walk into heavy traffic. I meant it. That night I slept a whole four hours. I’ve been on the same medication at the same strength for nearly ten years now, it works. I miss being able to take naps. Before MSA I was a great napper, 20 minutes and I could go again for hours. Now it does not matter how exhausted I am I cannot sleep. I do not dream either. There are no conclusive studies on such long term use, not that I would have a choice anyway. What a difference one symptom relieved can make.
Other than changes in colour vision my eyes do other tricks, I get video lag, trails if you will. Some people take drugs to experience hallucinations and trails but in my case it is daily living, Some days my eyes suddenly shut and do not want to open (another reason to give up driving). I have asked doctors (specialists) what causes this and I get the customary shrug. I find it is best to give in, and because my grandmother was blind, I know hop to do a great many things with my eyes closed. It passes, it happens less when I am rested. My vision changes all the time even within hours I need to change the glasses I am wearing anything from 1.5 to 3.0, and sometimes I need more. I also have a hard time looking up so it helps to lower my recliner to get a better angle on the computer. I also recently bought those hairband thingies with interchangeable lenses of varying strengths and I can mix any two at the same time, otherwise I would have to give up embroidery and fixing jewelry which I enjoy. It set me back less than 10 dollars, one of the joys of finding bargains on line. Funny how I seem to paint and draw just fine, without wearing any glasses at all. I do use them to see what I have done once finished. The changing color sense also shows in my paintings, some are almost offensively bright and others very tame in colour unlike my usual style.
interchangeable lenses
Some things I cannot control, things which in the past I had some measure of control over, like heart rate. Between the yoga training and time spent doing biofeedback. I could in the past bring my heart-rate down or up at will. Not anymore. I will keep trying but so far nada. The heart won’t compensate for activity or rest. It will start racing for no particular reason, or go so slow that I once called the doctor to ask how slow is to slow, his answer: “If it stops it is too slow”. Not much help, same doctor on when to go to ER: “if you fear for your life, go.” I avoid the hospital, they have no familiarity with MSA, take away my meds. The last time, a night on a suction machine because they took away my buscopan, I was worse off than if I had stayed home. I just go for the obvious stuff, stitches and the like.
I can only sleep on my left side, on my right as on my back I can”t seem to breathe. I do not move while I sleep at all, probably another symptom of a broken brain. I have a crocodile tear on cold days, my right eye tears all the time. If I lay on my back with a runny nose which seems to happen for no reason, I choke, horribly. No more flat on my back. I take seriously sleeping with the bed raised at the head, for that I use a wedge 12″ and another smaller wedge under my knees to keep from slipping down. Sometimes on a really cold night in here (no thermostat) I purposely slip down to be flat so my blood pressure rises and the body warms up, dangerous little game, but being cold really sucks. The last few years I take thyroid medication to turn up the furnace, as well the HRT has a positive effect on keeping my body temperature a slight bit warmer, I stop thyroid meds on warmer summer days.
I have to try and blink more, take deeper breaths especially while walking the dog, and I am starting to speak too softly again. I know when my blood pressure is tanking and I have enough warning to just sit down and wait it out, take a little Facebook time. I also have started wearing a corset, it feels good to use while taking longer walks, stretches the spine which I fear has become somewhat compacted by all that sitting in the recliner the exhaustion has forced me to do. I am hoping it will affect my exhaustion at some point too, I breathe more easily while wearing it. Just can’t wear it too much while sitting but for walking it is ideal. It is one of those laced contraptions, I would not advice those elastic jobs because they just squash you together without adding any support. The laced job actually works a bit like a portable rack, I feel taller while wearing it and I have back what was once my normal posture. I have used it for a month now and it is one of those things that will go in my personal success column, as will that thingy with the changeable lenses. Those lenses can be angled and they have none of those lines glasses have, and even my shaky hands can exchange those lenses no problem.
My keyboard has really large letters on it and makes clicky sounds so I know I have actually depressed it hard enough, I use dictation my phone to send text messages, and the font size on everything can be sized big enough that I can read texts even without glasses on. I use origami as a way to sharpen my dexterity, and if I am not in shape to draw I use my camera to translate what I see to how I see it. I am fortunate that I was very computer literate before MSA and I have found ways of using the computer as a tool to better my life with MSA. Without the computer I would not have friends who understand the journey. I like some of the games to keep me connected to the rest of the world – social gaming specifically, but I do not have the stamina for staring at the screen which I had even a year ago. My hands have become embarrassingly shaky of late. Last week I had trouble taking an onion ring offered by my son in law, it took me several tries to take it out of the bag and just as many tried to put it in my mouth. Writing this has taken me about four hours. Something in the past I could have knocked off in 15 minutes.
If your diagnosis was fairly recent you are still reeling from the bad news, alternating between crying, fear and forced bravery. You try not to frighten your family, but get your paperwork and other matters in order. You might decide to donate your brain for research , and volunteer for any available studies. All this has more to do with dying than living. and they give you a timetable to boot. So that is what you do.
My doctor sat me down, nearly with tears in his eyes, and told me I had Shy-Drager, he explained the symptoms (most of which I had been living with for some time), how it would progress and how long I had to live (6 – 10 years), and what would eventually kill me (pneumonia, apnea induced heart failure, or just plain stop breathing). I was kinda numb when I left his office. It was a couple of weeks before I informed my family, primarily the two kids who still lived with me, and X who was no longer in the picture and my mom and sister.
I was definitely under the impression that nothing could be done. I cannot accept that. Everyone I met in a medical capacity over the next year was in the mindset of preparing me for death and helping my family deal with that loss. It was me who lived with pain of dying nerves in my extremities, my inability to sleep, the many broken dishes and teeth from a failure to coordinate. I gave up driving the day I lost my depth vision. It seemed every day was a day of loss, and all the questions I asked were met with we don´t know. I am too stubborn and possibly egotistic to accept I can do nothing, and I was disheartened that I could find no-one who would even try.
My next step took me to the internet and to finding answers by reading research papers on topic only to find that on Shy-Drager in particular there was but very little. I found one support group. The support group was populated chiefly by caregivers and I felt I needed first hand experience to be helpful and not interpretations of what the patient was going through.After several months I had found four patients other than myself with whom I had some things in common: we were not yet seniors, a strong desire to live, a desire to be productive as long as possible, to live well past the prognosis we were given, and because we did not fit well into the mainstream of the support group we felt alienated and criticized. Most helpful was one lady who with iron will had lived with her illness for over thirty years. She did not live in North America and she had access to more doctors willing to try untried solutions, probably because where she lived it was less litigious. When she nearly died due to her digestive system failing to the point of her being severely malnourished, she was given a new lease on life by surgically implanting a gastric pacemaker,her failing neurological impulses were now supplied electrically by her pacemaker, and it worked. Despite most people with MSA having gastroparesis, she is the only one I know of who had this done.
Her experience with the gastric pacemaker encouraged me to do what I could myself to find solutions. As there was not much specific to MSA, I read all about any illness with the same or similar symptoms, also each specific symptom to see how it was treated if attached to another illness as with peripheral neuropathy in diabetes patients. that particular search led me to find a medication which improved my blood-flow sufficiently that I gained back the feeling in my hands,and generally lessened my pain in my feet and hands. The feeling was back but nothing improved by way of coordination, which illustrates my main point that we act on misinformation the brain gives us which leads us to do things wrongly, that makes us fall, drop things, or forget to pull a hand out of the fire. You would be surprised how much we can control once it is no longer automatic, the cost is utter exhaustion much of the time.
Forget multitasking, there is only so much we can do at once. If I walk I cannot talk without tripping or falling, I tell people about this, so they won´t think I am being rude, the ones that just laugh and don´t care are not in my life anymore. I cannot eat and pay attention to conversations, and be witty, so either I eat alone, or drink a can of Ensure slowly. I primarily eat finger foods because utensils are taxing. I remember the Thanksgiving when my daughter had to cut my food and help feed me, I was in tears the entire time. The following year I brought a can of Ensure to the table and once home nibbled at the leftovers. At home I practised using forks and knives and got a bit better at it but not well enough to feel good about doing it in public. One of my problems is that my mouth does not open on time and I often end up stabbing my upper lip. I made the decision that if sharing a meal with people it was more important that I could share in the conversation than eating, that worked for me.
Which takes me to speech. Mine has been a varied speech problem. One problem is the volume control, I cannot hear how loud/soft I am speaking, so everyone has been made aware that it does not hurt my feelings to tell me I am speaking to loud or too soft so I can adjust it. My other problem is a partially paralysed tongue (since infarct). That side of the tongue would just flap about any way it wanted and make controlling sound nearly impossible. someone suggested me holding that side of my tongue between my teeth, which worked. I still speak with my tongue on one side between my teeth. I avoid the telephone because I cannot lip read on the phone and I have become surprisingly adept at lip reading so much so that I do not think about it until a hand is put in from of the mouth I am trying to read, or being on the phone. These were small gains, giving me control over some part of what was happening.
Last summer my big gain was that I could walk with flip-flops on, not without the occasional trip of fall but mostly I could. Of course these are not the life and death issues that are the most worrisome, but controlling your tongue and breathing will mean you choke less, and that is good, Falling less is a good thing. Just to illustrate how weird the body with MSA is on waking up try to form a picture of how your body is positioned with eyes closed and without moving, tell someone with you, tell them where your left foot is right foot is etc, if leg is bent, straight, as detailed as possible then see how correct you are. Without cheating I fail completely. If your brain does not have the ability to let you know where everything is at any given moment, you are in trouble. To make up for this loss in position sense you have to resort to cheating, by feeling, hearing or touching to accurately let you know where everything is so you can make the next move – and that is why we are so tired all the time.
If you do not want that dry eye, you can use drops, or you can remind yourself regularly that you need to blink. It can become a habit to blink three times every time you finish a paragraph or something of that kind. To work on my speech volume I light a candle on the table place it four feet way and try to move the candle-flame by speaking once that is easy move it further away and start again. Singing everyday help strengthen the diaphragm. Panting like a dog helps raise your oxygen level (kappala bahti breathing in yoga). Walk backwards slowly. Walk barefoot when possible and use your toes to grip the ground when you walk there are sensors in your toes which help with balance, something left over from the infant/primate stage, unfortunately we are usually promoted to wear slippers or shoes but being barefoot might be more secure. One downside being barefoot for me was the loss of sensation in my feet meant that if I injured the foot I would not feel it and it could worsen or get infected, the trail of blood in the carpet was not a lot of fun to clean up either. I wear wider shoes just to give those toes wiggle room, the other side effect of gripping toes is that it promotes blood flow in your lower extremities a bonus is your blood pressure is low.
I wonder if sometimes, or even most of the time our low blood pressure is a matter of low blood volume rather than low pressure the way we usually understand it. If the drinking of water is one of the best ways to raise your blood pressure then is it not likely that our blood volume was low and therefore insufficient to produce higher blood pressure? When you lose the desire to drink or eat this could happen. If your blood volume drops it also makes your blood sticky, likely to be unable to move through smaller blood vessels and when the blood pressure is low the body protects the heart lungs and brain and sacrifices everything else. So little blood flow to the extremities and the eventually the nerves there starve and die. Would the same happen in our brain where the blood vessels are delicate? So make a lit of everything you can do to make your blood flow better. Drink more water, move around, stand up regularly (just do it slowly). Wiggle toes and hands open eyes and mouth wide and close them, If you have the misfortune to have to stand and wait for something do butt clenches it helps a lot. and only you know you are doing them. Drink coffee and tea. Laugh out loud. Having a dog helps, they find ways of making you move, and laugh, and when they pant, you pant too.
If you crawl back into the four year old self, and do what the four year old did to not pee their pants – go to the washroom before your go somewhere – go every couple of hours if there is and urge or not – just keep the bladder from ever being at capacity like your mother told you. Stop drinking a couple of hours before going to bed, or before going for an extended outing. After decades of not having to think about it because we could feel if we were full or not we now have to rely on self-discipline and when available to us; when all else has failed medications. I found it very useful to work for a while with an incontinence nurse. More on this specifically at: https://www.facebook.com/notes/aletta-mes/i-dont-like-being-in-diapers/10152317032397179 in a previous note.
I wish I had never been told that MSA was terminal, that I was told it was a chronic illness like diabetes and that there were strategies for living with it. instead of being told to get my life in order because I was going to die. It wasted several years going through loss after loss with no ideas on how to cope, how to get the most out of my diminished life. It is also near impossible to not go through the grieving process for your own life throwing your body and mind into depression, and also having a profound affect on the people closest to you, everyone feeling helpless. Even cancer patients are being told to not five up to keep fighting, they used to be told to put their lives on order. Many people now survive cancer and live to die in advanced years. People with MSA put their lives in order, are urged to donate their brains, and passively hope fora cure. Even people with strokes are given therapy of all kinds to regain what they have lost to dead brain tissue, how is that so different from MSA? Dead brain cells are dead brain cells, so why could we not regain use by the same means, retraining, rewiring, the brain is plastic. Using Lithium people have even grown new brain tissue, perhaps stem cells can help with that as well .but for now we have a great many brain cells doing nothing that can be put to use learning how to do what other now dead cells used to do.
![20170123050651-f09370cbed.[gif-2-mp4.com]](https://live.staticflickr.com/428/32472212275_9af8805d25_s.jpg "20170123050651-f09370cbed.[gif-2-mp4.com]")
Lab Rat's Desk 