Beach Walk(er)

The sun is finally looking like it might stay a while, and the forecast looks downright promising for this holiday Easter weekend coming up! Advance warning to my girls, bring your beach shoes, a walk on the beach and maybe a beach fire is in order!!

 

My unusual walker is what makes beach and forest walks still possible for me. It wasn’t cheap or easy to find, but it tops my msa must-have list. (it and my adjustable massage memory foam bed!! ) Below is the review I wrote for the small Swedish company (Trionic) that invented and manufactures this one-of-a-kind product. Check back for beach pics after the weekend.

MSA Lifechanger

Diagnosed with multiple system atrophy (msa), I have very poor balance, a clumsy irregular gait and fluctuating levels of energy and ability. A rare and relatively unknown disease, it found me and came on quickly. People with msa gradually become more and more disabled, needing walkers, then wheelchairs, then are bedridden. There is no cure, but it is generally felt that activity is beneficial and keeps one independent longer. From onset of msa to death is usually 5-9 years, I’ve had symptoms for three. A harsh reality I know, but all the more reason my veloped is priceless. It has enabled me once again to get back out of doors.

For me, the benefit of the veloped is twofold. The immediate appeal of it was that it let me get back in the woods, which brings me enjoyment and day to day better physical and mental health, but it also, by giving physical support which increases my endurance, the veloped is helping to forstall the wheelchair. When I first realized a walker was inevitable, I had a loaner. It was sturdy, and a generous loan, but not suited to trails. I was surprised at the limited variety of walkers that were available once I started seriously looking to purchase one. Then I found the veloped online. Walkers in the garden, on the beach, a mountain trail, in the snow… and I knew right away I had found what I was looking for. The veloped has given me back a little hope and encouragement to plan into the future, and next summer it’s taking me camping at Sanjo Bay, at the tip of Vancouver Island. This will be a one hour walk each way, and a ‘goal’ to keep walking for!

 

For those looking for a walker, I’d suggest not trying to find one that fits all your needs, but perhaps looking at it the way you’d look at shoes or sports equipment. I have my veloped for my outdoor and offroad travels, and a more traditional one for in the house.

Improvements? There are a few inconveniences, but it is really the disease that is inconvenient, and the veloped has increased my activity despite the msa. However, extended add-on handlebars that would enable a partner to more easily give me a push/ride when the walk exceeds my ability would be useful, and maybe also a ‘bike rack’ for a car that is designed for the veloped, to keep the mud out of the car!

Finally, due to the relentless nature of my disease, I don’t know how long I’ll be able to use my veloped, but it has already earned its keep. I can once again enjoy a walk outdoors without fearing falls, and its inflatable tyres and three point design allow me to access some of my favorite places once again. That is priceless.

Special thanks to Stephan, who was very helpful and patient with my queries, and went out of his way to help me with my purchase and follow-up. Happy New Year! ~Kathy

https://www.facebook.com/#!/veloped?fref=ts

http://www.trustpilot.co.uk/review/www.trionic.biz

http://www.trionic.biz/

March 21: This Date in (MSA) History

Olga Korbut. Does this name ring a bell? Many of us could summon up a vague gymnastics association.  Some, like my good friend Paul, could probably tell you when and where she competed and how many gold medals she won and 5 or 6 other facts about her. How about her teammate and fellow countryman Nikolai Andrianov? Lesser known, but he actually was the mens Olympic medal world record holder until Michael Phelps surpassed him. Even lesser known, Nikolai Andrianov died March 21 2011, age 58,of Multiple System Atrophy.

http://www.nytimes.com/2011/03/23/sports/olympics/23andrianov.html

http://www.msaawareness.org/wordpress/wp-content/uploads/2013/02/OlgaKorbut-March2013-pdf.pdf

Project MSA

I believe that if you need something, you are your own best advocate. No one else knows exactly what you want, and no one cares about your own issues as much as you do yourself. Now that I have MSA, that is doubly true. I was looking on the shydrager forum and saw some posts by others with MSA. One wondered if stress was a contributing factor, I have wondered that too. Someone else wondered about toxic chemicals he’d been exposed to, another about malaria pills. I wonder about the gut contribution, potential gluten sensitivities or neurotoxicity. I’ve had minor success with fish oil reducing symptoms a little, and there are other things I’ve tried and quit with no results. I imagine many of you have things you’ve tried too.

 
So here comes my idea. I think it could be useful both personally and for the big MSA picture to gather our individual information in one place. Maybe we’d see some patterns, maybe we’d get some new ideas. It can’t hurt. The answer is out there somewhere. I see it as a simple spreadsheet, identity numbers running across the top (rather than names, for privacy) and symptoms and other things running down the side. You could see at a glance if others shared your symptoms, or add a new one you are experiencing and wondering about. These would be both obvious symptoms as well as unrelated problems you or I may experience, even if they’re not thought of as part of MSA. Like the pins and needles sensation.

There is a lot we can’t do when we have MSA, but this is something we can do. For ourselves, for our own information, and maybe too for the big picture. Just maybe it will help someone to figure out a bigger piece of the MSA puzzle. Many people gave me suggestions when I wrote about leg spasms keeping me up at night. That was kind and helpful, especially when this disease is new to my doctor too! A spreadsheet with common symptoms could also have a hover over link that brought up solutions or tips from others. MSA is a lonely disease, but it doesn’t have to be. In many ways we are a community, a family. I think a collaborative project like this would be empowering, and maybe bring us all a little closer to a cure. Likes? Ideas? Suggestions?

Kathy

Falls, or The End of a Good Thing

Multiple System Atrophy (MSA) is often misdiagnosed as Parkinson’s disease, but for those more familiar with it, there are things that differentiate the two. Last March 2012 at UBC, the intern and then the neurologist spent a very thorough three hours going through my history and symptoms, and unbeknownst to me, bringing MSA into focus. The things that concerned them were my bladder emptying issues, my low blood pressure and my frequent falls. Low blood pressure ran in my family, and who doesn’t have bladder problems in their 50‘s?? But the falls concerned me too.

I’d had several falls in the 18 months or so leading up to my first UBC visit. At first they bewildered me, then eventually raised and reinforced my Parkinson’s concerns. The first fall occurred one sunny September in 2010 on nearby Quadra Island, when a friend and I went on a bike ride down thru the Cape Mudge reserve and on towards the lighthouse. We rode past the Tsaqualuten resort, ate our picnic on the grassy bluff overlooking Georgia Straight and Campbell River, and then moved on thru some trails, first pushing our bikes thru a ravine to carry on cycling on the other side and finally looping back up along a country road that took us back to the ferry. It was a lot of fun.

Pushing my bike up the other side of the ravine was surprisingly difficult I recall now. So too was riding the easy trails that followed. I was finding it hard to respond to bends in the trail. I slowed and got off my bike in places I would have previously steered with ease. One such gentle turn I saw, but was unable to navigate, and I drove off the path, slowly falling over into some thick salal. Another bike ride on a trail near home had me angle right into and scrape along a bridge rail. Summer of 2011 I was still bike riding, still oblivious to MSA, but starting to investigate the possibility of Parkinson’s disease (pd). Not easy, but ever the optimist, I knew that lots of people with pd still ride bikes and live active lives, and worst case scenario, i was going to be one of them.

There are many trails around town, and we went bike riding frequently. More and more often I was getting off and walking when I felt unsteady. The last time I remember bike riding, we were going for an easy ride down to the bike path that runs alongside the ocean. I stopped at a crosswalk. It’s hard to describe what happened next. There is this way you get half off your bike when you stop for traffic but plan to carry on, one foot is on the ground, one resting on a pedal, waiting for the light to turn. I was standing like this, had pushed the walk button, intending to get off the bike while I waited for the light, intending to jog with the bike to the other side and mid-jog put my foot back on the pedal and swing over the seat and carry on my ride. Instead, shortly after I came to the stop, pushed the button and put my left foot down, my body followed my left foot in slow motion, bringing my bike with it, and I fell. Fell not from a collision or anything dramatic, but simply and profoundly thrown off balance by a slight change of position.

At ego damaging times like this one hopes for no witnesses, but there was a pretty good lineup of cars in each direction responding to the red light I had requested. I was able to get myself back up and scurried across the road with my bike, waving an embarrassed ‘I’m ok’ to the concerned drivers. My husband, who’d ridden ahead but circled back when he noticed I wasn’t there, called out to me, and I started bawling. That is last ride that I remember. I’d planned to ride again, but at UBC the following spring the neurologist suggested I switch to a stationary bike. She obviously knew something I didn’t.

There were ( and still are) other falls, the time I lost my balance out sawing up some branches in the yard, checked quickly to see if the neighbours were watching, then got back up and continued sawing – this time not using my foot to hold the wood. The December my husband was on the roof in a storm fastening a tarp and me looking up from below lost my balance and fell, and hurried to get up before he looked down and saw me, on my back in the rain. The taking my ski pants off fall, the turned too fast while wearing socks on the hardwood fall, the sat down too hard too close to the edge of the foot stool fall, the topple backwards when i was weeding fall, the thrown off by reaching too far fall, the on the school bus still working nobody saw did they ? fall. And just when I was thinking hey I havn’t fallen in a while, I must be doing something right, there was the just last night felt like the rug was pulled right out from under me it was so fast fall. No broken bones or cracked noggin yet, knock on wood.

That’s all for now, Kathy

Tip of the Day

I’ve been struggling with coughing and sputtering more often than not when i drink anything these days… I researched some exercises that ive been working on that seem to help in the moment but i forget them when i dont have them in front of me. However after much frustrating coughing, I serendiptiously ‘invented’ something that is easy to remember and works like a charm… bird calls… haha or more specifically, crow calls. Caw caw caw. I repeat it, silently even, before a sip, and it ‘magically’ reminds my throat what it is supposed to be doing. If only everything was this easy!

March is Multiple System Atrophy Awareness Month

Miracles for MSA request public support in spreading the word about this rare and fatal neurological disease and the desperate need for research. Time is running out for those currently diagnosed.

press release: http://www.prlog.org/12062758-march-is-multiple-system-atrophy-awareness-month.html

You Amaze Me, Samantha Crawford!

Samantha Crawford’s open letter to David Cameron, PM of the United KIngdom
 

http://www.youtube.com/watch?v=cjWxsHOzLkg&feature=youtu.be&sc

In the Middle of the Night

When my legs start cramping and twitching in the middle of the night, it is impossible to sleep. Sometimes I’ll get up, but I try not to as I don’t walk so great in the middle of the night. Also, getting up seems to feed the getting up in the middle of the night habit and before you know it, my days and nights are switched right around. Funny coming from someone who has never in 55 years been a night owl! Anyways, waking at night and NOT getting up means that often I lay awake in bed for several hours.

Time was, say 6 or 8 months ago I’d be sobbing within 5 minutes, as quietly as I could so as not to wake anyone, but sobbing and not able to stop. This isn’t the emotional incontinence over the top kind of crying that I mentioned a few posts back, this is more like I’m pissed that I’m sick!!! I don’t want to be sick!! I want to be able to walk over on the ferry by myself and carry my grandson and talk clearly and sing and go for a run in the Beaver Lodge Lands with Willie again!

Nowadays I cry less frequently and for shorter durations, and I am my normal happy self when I forget that I am sick. I still like people and have my weird sense of humor and optimism and appetite and all those things that go to crap when someone is depressed so I know I’m not depressed, just seriously unhappy when I remember I am sick. So I think that brings me back to what I started writing about …

When I lay awake at night, rather than think about my cramping legs or the growing list of what I no longer can do, I think, this may be 3 am but it is my life… it is good, usable time, and what can I do, even if I’m just laying on my back in the dark. So this is what I’ve come up with, my tentative list, in no particular order, and if I think of something more pressing, It can always be moved to the top of the list!!

Things to do when restless keep me awake at night

1) Do throat exercises
2) Do kegels
3) Plan the next grocery list
4) Try to remember, in order, all appointments for the coming two weeks
5) Think of the features I want on my future tablet that I’ll be able to use in the dark in my waking hours
6) Stretch my toes wide and straighten my ankle/foot
7) Stretch my legs long
8) Massage my belly and try to get some digestion happening…
9) Think of emails that I need to reply to and answer them in my head (the downside of this is that if I owe you an email, I probably think I’ve already answered you!)
10) Make a to do list for tomorrow, and see if I can remember some of it in the morning.

That’s all for now, Kathy

Big A little a what begins with A???

Aspiration, Apnea – A a A!!! Oh, and articulate, and anxiety… (sorry dr seuss!)

Choking is never fun, and I seem to be doing it more.  I’ve always been on the other end of it though, as the parent, or the aide with the student. It was always scary, but always resolved well, thankfully. And honestly, now that I’ve had my own choking incidents, Id have to say it was scarier when I was the attendant. Choking felt sort of surreal, like, oh… so this is what it feels like. Hey… scuse me (tap tap) I’m actually choking (In sign language) could you please do that squeezing maneuver on me?? And it worked. That said however, I KNOW it could be worse, I don’t want to tempt fate and am changing some things. Like no more huge mega vita vim vitamins.

How it Started: I first noticed my voice changing in 2011. It would become gravelly sounding within a minute of starting talking. In 2012 I saw the Ear Nose Throat Dr., who looked at my throat with a skinny camera thingy that he put up my nose and down to my larynx. (btw there’s no way that thingy hasn’t been down countless other noses, and when he took it out he just put it in a container like they put the combs in at the barbershop….. I’m just saying…!! ) Anyways, he looks in the camera thingy and gets me to go ahhhhhh and eeeeeeeee and told me that my larynx had a tremor when it shouldn’t, when i wasn’t making any sound,  and that supported the (then) diagnosis of Parkinson’s. He also referred me to speech therapy.

I went to  group speech therapy sessions with other Parkinson’s patients, where a modified LSVT was taught. We practiced  speaking short sentences without fading off and taking deep breaths and sustaining an AAAHHHHHHHHH sound as long as we could. We were also each given a tool for working our lung strength/capacity, a sort of pipe that has built-in adjustable resistance. Its called The Breather. (Link below). I found the speech group informative, but didn’t stick with the practice after the classes ended like I should have. I could tell that what I had was different from the rest of the group participants, and that was on my mind and gave weight to the neurologist’s guess that what I had looked more like msa.

More developments: Anyways, I also started getting an occasional slur. I noticed that people were asking me to repeat myself a lot, and that it was hard to get my mouth around words sometimes.  As well, I found myself gasping for breath in the daytime, out of the blue. I also had reports of (me) snoring lots, and wheezing and gasping in my sleep. Changing my bed to an adjustable one last fall seems to have stopped the nighttime gasping, as long as I’m sleeping in my own bed.

The most recent airway development has been sputtering and coughing when I’m drinking, it would seem I am aspirating a little. I also had a scary incident with a huge vitamin I (thought) I could swallow but couldn’t… wont be trying that again. Which brings me to today. I know these are msa symptoms, but i want to do what i can to postpone or subvert them even. It gives me a sense of a little control when I can change even the tiniest thing, which in turn does great things for my state of mind!  I’ve done some net reasearch and found throat exercises for apnea and aspiration and I’ve pulled the ‘breather’ back out of the drawer and have been huffing on it… I’m confident that with effort I can at least alter the progression of this part of msa a little, and it keeps me ever hopeful that someone somewhere will find something to alter the big things.

There is a link to the right with a printable powerpoint breathing exercise program on it plus a couple of sets of throat exercises for apnea and aspiration. I can send the files if its easier for printing, drop me a line.

That’s all for now, Kathy

http://www.lsvtglobal.com/

http://www.alimed.com/the-breather.html

The Nicest People (part two)

 

For a rare disease, i sure know a lot of people with multiple system atrophy! Today I’m introducing Sonja, who lives in South Africa. She is about my age, and started having symptoms about two years before me. I found reading her history interesting as it parallels mine in  many ways.

We both have lifelong best friends from school days, (how lucky is that?!) We’re both outdoorsy, our past lives spent hiking, gardening, and camping, and we both have multiple system atrophy. Double drat.