Day 20 of 30 days of MSA awareness These days I find I have much in common with a toddler, except that the child is moving forward whereas someone with MSA is being pulled backwards, into drooling, diapers, intelligible speech and having to be fed. I am admittedly with desperation trying to hold on to four year old status. I can feed myself but no elegantly and am best with finger foods. Sometimes it takes fingers from both hands to guide food into my mouth. Drinking from a glass means having to hold the glas while at the same time holding my lower lip to the glass to avoid stupid stains on the front of all my clothes, cups to, not just cold beverages and glasses. I can use a fork and knife very well for getting food cut and onto the fork but the journey into my mouth, well, no guarantees. That feeling I wrote on earlier of having my mouth shrunken, it also feels like I am guiding food into a minuscule target. I like french fries. Someone once told me not to mix textures, that was brilliant advice, along with avoiding stringly foods like melted cheese and chicken unless it iscut into tiny pieces. I never drink liquids while I eat and that was a rule as a child, nothing to drink was given until the meal was over. Mom said to chew and chew again, and add nothing more into your mouth until it is totally empty, that too has saved me some choking. Everything I drink is room temperature or warmer, ice cream is fine, but ice water is out. On the nutritional end of eating I made one rule for myself a few years ago, unless it is going to be good for me dont eat it. Part of that involves not eating the kind of fibre (insoluble) that gave dinosaurs gas and necessitated that the bovine animals have multiple stomachs. Since I only have one which barely works, it shall not be consumed. MSG has always been a poison for me, I was diagnosed with epilepsy in my teens and many years later a doctor at emergency made the connection between my seizures and consumption of Korean food, he told me to avoid MSG like the plague and see what happens. The stuff is in everythiing an under a number of chemical sounding names, or worse hidden under the umbrella term seasoning. It makes me a troublesome guest because I have to ask how did you make it, what prepacckages stuff like sauces did you use? Most restaurants use it, or use the aforementions prepackaged mixes and sauces. Ill never fully understand why, it is categorised as a flavour enhancer but frankly nothing without MSG is any the worse for it. I would suspect it is addictive and makes people eat more than they need or want to. Now I also read for insoluable fibre. As a rule best to go with very few and only recogniseable simple ingredients. Low residue is what I am relagated to by the 3rd week of chronic constipation. It is hard to choose which is my most troublesome symptom, but the hardest to manage is contipation and the inevitable impaction. The last few years I pray to God to just give a good bowel movement before Christmas so I can enjoy the holiday too. so far it has been answered, the rest of the year I am on my own. It is not a topic I am at ease with discussing with my doctor. Frankluy well into having MSA I still had not real concept of what normal was supposed to be. I thought everyone was sick, nauseous and had strong abdominal pain with every emptying. Until one day the topic cam up with my daughter who looked at me horrified when I said just that to her and told me no, it was certainly not normal. Obviously this would be my first symptom. It was not diet related either, as a ballet dancer I was a freak for knowing what I consumed, and being distended even a little could seriously mess up my energy levels and my morale for how I thought I looked in costuume. It was less of a problem when I was dancing because it promoted movement but now that I am for the most part in a recliner it is a vastly different story. A few years agao I was having an X-raay (the kind with barium, yech), I took all the suggested laxatives not once but twice, and still nothing, the doctore prescibed something truly vile to add in and finally on the third go I spent an afternoon in agony emptying. the next day I had the barium x-ray which showed that I was still not empty. Although still distended much of the time drinking senna tea each night makes it a little less painful, I use Nutratea which also contains cascara sagrada (crampbark), as long as I take it daily there is some emptying. I also find, with my digestion being so darn slow that I am better off eating solids one day and only semi-solids and liquids the next. Again as you tell a child, you go every day whether you feel you have to or not. There is no end to humiliation with MSA, nothing good about waking up having soiled your sheets because you are so backed up, what comes next even worse having some of the foul stuff come up in your mouth, it hasnt come to that with me, and I have lost control only a few times, yes, I think if I could wish only one symptom away, this would be it. I have less of a problem with urinary incontinence, the way my nerves have decided to play games with me is to be retentive, more distention, what fun. Still at least as long as I dont let my bladder get too full I am pretty much OK, as long as I also take Duvoid - Bethanechol Chloride. A few years ago when my shrink was still alive I had been unable to pee for several days, not even a little, I was also covered in pettichea (sp)(tiny bruises) a result, I was told from becoming hyper-volemic (too much blood volume). One ER gave me Previcid and sent me home. I called my sister (an RN in neurology) and she took one look at me and drove me to another hospital, the one where she worked. They said I shouldnt worry because I wasnt feverish and my BP was low, we both tried to explain MSA to him, but he shrugged and said hed never heard of it. My sister asked if they could try a catheter, and the nurse in the room started to do just that, but there was nothing, not a drop. He raised and eyebrow, looked at me and said are you sure you are not exaggerating. I was livid, we were both livid. All I could do was go home and wait to become and emergency. the following day I had an appointment with my shrink, so before going there I had sent him an email telling him my problem. He was taken aback by just how bad I looked, he gave me a prescription for Duvoid which he had found mentioned in two studies and several case histories involving persons with MSA (Shy-Drager back then), and told me it was found to be very effective. He said I should pee by morning, and I did, I have been taking a maintenance dose ever since, and no more crisis of that sort have happened to me. I also try like the plague to stay away from ER rooms, and hospitals in general. By now I am taking a rather large number of pills, but they all help my symptoms and I am fortunate that these are all old well established medications and I have no side effects from any of them. I am also taking a fairly low dose of most of them and have not needed and increase of any of them in over eight years, some like the Duvoid I have actually dropped the amount. I take them with yogurt or pudding because it is easier to swallow, when swallowing is worse than usual I ground them to powder in a coffee filter and put them in yogurt, I bought an inexpensive crucible at pestle at Ikea of all places. I am glad not to be living alone because I am prone to forgetting to take my pills and he knows the symptoms well enough to check first if I took the previous dose or not. I admit not understanding addiction too well since I easily forget my pain pills which are narcotic. Usually I just think Ive taken a turn for the worse, curl up in the fetal position and moan and groan, does not occur to me that I missed a dose I always think I have it under control. more: https://facebook/notes/aletta-mes/30-days-of-msa-awareness/10152235479847179
Posted on: Fri, 21 Mar 2014 07:32:23 +0000
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