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KarenNWendyn

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3,933
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PALS
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07/2017
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Southern Oregon
Yesterday I had my first fall as a fairly new PALS. Here's a bit of background and the story.

My passion is playing the bassoon with a very good orchestra. I know my bassoon days are numbered, thanks to ALS, and I've arranged to have a backup player assist me with some of the pieces to help me conserve energy and also to pinch hit for Lou Gehrig here if needed.

Yesterday we were playing a concert (a Mozart piano concerto and Mahler's 5th Symphony). Walking from the parking area to the auditorium while carrying the bassoon, but without ambulatory aids, my toe caught the uneven edge of the sidewalk, and down I went into a face plant. I lacerated my chin below the jaw line, and blood was everywhere. With the help of colleagues who lended me bandages and a hanky, I pulled myself together and actually managed to play the Mozart piece. However, I continued to bleed and felt lightheaded, so I had my assistant step in to take over the Mahler for me while I had my partner pick me up and take me to the ER (good call). I needed sutures and a CT of my jaw which fortunately came out clean.

So other than a sore jaw and chin, my pride is wounded, and I am starting to see my fate under ALS. Normally I wear AFOs and use a cane, though I don't think they would have prevented this type of fall. A walker definitely would have helped, and of course a wheelchair would have avoided the whole thing. I realize the walker and wheelchair are coming, possibility sooner than I had hoped.

What gets me is the lack of control and lack of power I feel in this disease and the sheer sadness of seeing my body decline and knowing it's only going to get worse. How do other PALS deal with this? Thanks for your support.
 
Don't beat your self up Karen. Like you said, a walker probably would have saved you but that is history. The way I face it is this is the way I am now and try to protect myself as best I can, if that means a walker, a wheelchair, or a lift chair then so be it. A fall is one of the worst things we Pals can experience for many reasons so please try to be careful.
Al
 
I'm so sorry, it's just horrible when you realise you can't control this beast.

I have found that PALS who view equipment as the way to fight ALS tend to live the highest quality of life. So yep walkers and wheelchairs will give you that. Someone said one day it's more embarrassing to face plant than sit in a wheelchair :)

Now a PWC can take quite a few months to get from the day of ordering, so I would recommend start the process for that now. Do it before you 'need' it. Take control and research, test drive, shop around - remember you can get the best chair for all your needs and your own body. If you wait, and start to really need the chair for daily activities you will be trying to get one in a rush and it will be highly stressful and every little delay will be a crisis.

I'm glad you weren't seriously injured - my Chris would not heed safety at all and he had many falls, 2 of them with serious injuries that affected his quality of life for the rest of his time.

Steve walker here has shown how much life there is in a PWC many times over in contrast :)
 
Karen,

I certainly can empathize. A year ago I was walking just fine. I was still walking a mile each day (down from running 10) and had pretty good balance. I went to the grocery store and, foolishly, tried to carry out four bags of groceries. I didn't see the curb and twisted my ankle badly. I didn't go all the way down but really didn't know if it was broken. It was my "good leg" and also my right leg. I lived less than a mile away so I drove home with my left foot. My ankle was twice its size and I did the RICE therapy. After a couple of weeks I started walking on it, then evacuated for hurricane Matthew to Orlando. I overused it and, as a result, could barely walk/hop a month later. Then my unsteady gait put my back out and I resided in my lift chair until about March. During this time I ordered my power chair. Just in the past couple of months, my good leg, injured ankle seems more steady. I think being in the pool and being hyper aware of not walking too far has helped.

I have a sense we're a lot alike. I'm used to being in control, was one of the bosses at work, owned my own business (CPA) for awhile, and a perfectionist. Now I'm sort of mad/scared about my body. I played the piano. I did extreme sports. ALS sucks.

I'm sorry you fell. Sometimes when I get frustrated I do risky things. After the hurricane I climbed a ladder to get to a high shelf in my closet. It was stupid. I decided to make an appointment with a counselor. I don't know if it will help but it's something I can still do.
 
Hey Karen, I too had to give up playing music ( never at orchestra level) along with many other activities.
As it is true this nightmare takes away constantly,it also gives but I had to change my head around to see it.
Meltdowns are apart of this journey, I have them then try to get over them quickly as I feel they accelerate the nightmare.
As was said get the equipment asap! Your gonna need it and it helps to stay in the game longer.
Good luck thanks for sharing! Keep on posting
Chally
 
Good points from all of you and thanks for the support. You're all people I wish I could meet in person. Kim, I'd be hanging out in your pool with you if I were near by, swapping all kinds of stories. Chally, I've been so inspired and uplifted by your posts ever since I found this forum -- you're like the PALS guru. Keep on posting buddy. Tillie is definitely the CALS guru (tho I love hearing from all the CALS), and Firefighter just a neat guy. Thanks all.
In terms of equipment, I reached out to my local ALSA social worker and PT -- we'll get an assessment and go from there.
 
I am so inspired by you being able to play. I played trombone, but those days are now behind me. Like many, I learned about falls the hard way. Using adaptive equipment has just about eliminated the falls. It took me awhile (and a few broken bones) to become a believer, thoug.

Steve
 
Hi Karen, so sorry to hear about your fall but I am glad you were able to pull it together and Join in the performance. I know these are difficult decision to face. I highly recommend you consult with a P/T regarding these decisions. I think that a lot of PALS (myself included) have sacrificed extended mobility for the "safety" of a PWC, I honestly believe that had I sought Out a more aggressive P/T I may have been ambulatory at least a little while longer and who knows how long it would have been with a proper workout regime etc. I was talking to a friend a few years ago who had been recently diagnosed and I said the best advice I could give you is to "not stop doing anything until this damn disease forces you to do so" I think I would say the same to you.

Good luck, and God bless.

Tom
 
I agree with TomSanti whole-heartedly. I am like a drill sargent with my husband. I am a PTA with 32 years experience, much of it spent in in-patient rehab. I have tried to keep him mobile as long as possible, and to that end, we have had many, many pieces of adaptive equipment used since his diagnosis 18 months ago. Because of my background I know that maintaining as much as possible, for as long as possible - SAFELY - has many advantages. Please do not shun adaptive mobility equipment. Yes, ALS always wins, but lets kick the SH*T out of it as long as possible and "do not go gentle into that good night".
 
As a caregiver I will add that you need all of the equipment options available to you at all times. Then you have the flexibility to decide when it is appropriate to use each one. Finally, you need help with you at all times, an extra hand for support can make the difference between falling and not falling.

We still travel in an RV and my wife has to go in and out of the trailer. I replaced the factory 3 step with a 4 step unit so that each step height is less, also added a better grab bar. Even with these changes, I won't let her use the steps w/o some one helping.
 
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