MSA and Neuroplasticity – More abour Neuro-plasticity and Retraining part 1

If you take away your pet hamsterś exercise wheel and limit his/her space after two days of lying around your hamster will no longer be able to walk, even to his food, he/she will waste away and die.  Sound familiar?  The hamster unlike the human being does not have the knowledge or understanding to use reason to get going again, we can.  Sure there are limitations, but not as many as most people think there are.  Consider living with MSA more of a challenge and less of a curse.

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.