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justolemom

Member
Joined
May 1, 2017
Messages
27
Reason
PALS
Diagnosis
05/2017
Country
US
State
New York
City
Rockville Centre
I got my probable ALS diagnosis on May 24th, days before my husband and i would leave on an anniversary trip to California. We have shared this horrible news with some family and our kids. This is just overwhelming and I am so confused as to why we have to wait 6-8 weeks for a followup at the ALS clinic. IS this protocol at all hospitals? We just feel so alone, like I am just waiting to not be able to walk one day. We look online and well, that just scares the hell out of us. This forum has so many kind and helpful people, I did post earlier, before the diagnosis. Everyone seems so brave - I feel like a coward, Ijust want to hide in my bedroom with the covers over my head. Each day I want to be strong for my kids - but I don't feel strong. I am having a second opinion this Monday and pray for a miracle.

I just picked up my brace for drop foot and wound up pulling out my back wearing it at work. My muscles must be so tight because of compensation for my walking. This has caused much pain last night and today. Yesterday I thought this was an ALS thing and I would be walking in pain but from what I have read here pain and ALS dont go togethter so his must just be a strained/pulled muscle in my back.

Wondering how people heal when they have ALS. I have had sore muscles but am afraid this strain/pull will accelerate the muscle dying. Does that sound crazy?

Thank you for all the posts/information on this site. I have been able to find answers to some questions and just additional information. I apologize that this post is so all over the place - that is exaclety how I feel - sad, angry, hopeless and in disbelief. Like I want to go get tested for LYME and I will find out I actually have an illness with a CURE.
 
Glad to hear you are getting a 2nd opinion -- always advised, even with a "probable" dx.

Pulling a muscle will not speed its dying. But normal considerations like heat, swimming/floating, massage (from an MT, not chiro) and gentle stretching at least morning and night still apply.This could be a good time to line some of those up.

Yes, the clinic wait is likely based on prebooked appointments before you were diagnosed. You can get on the list to be called if there's a cancellation. Talk to the OT via phone or email if you have continued difficulty with the AFO.

You're not a coward, Mom, and your kids will never think you are one. It takes time to process this, and you never really do, which is actually good, because it keeps you "living until you can't." Give yourself and your family some white space to understand that you now know what you will die of, but not when or how. The future isn't written. Sadness, anger, disbelief will be your companions to some extent all along the road, but they don't have to control how you live as a family.
 
I am sorry. Everything you are feeling is very normal especially as it has only been a week. The emotional part will get better. You are in shock now.

When you go for the second opinion do ask if there are other tests that need to be done to rule out mimics. A standard Lyme test is often done but please don't get sucked into the " special" Lyme tests and all ALS is Lyme scam. For your second opinion do read the second opinion sticky at the top of the General subforum to help prepare so you can get the most out of the visit.

I think the wait for clinic is common. Although there may be schedule issues it also is done so that you have time to recover from the shock

Affected muscles do heal slowly so no you are not crazy. But if your back is not yet affected hopefully it will heal like any muscle strain. Do you know how the brace caused it? It should making walking better!

Really sorry you have to be here. Don't hesitate to ask questions
 
First, I'm so sorry about your diagnosis but hope that you still have some good times ahead.

Pain has been a constant with me from Day 1, even before I was diagnosed. I was diagnosed with fibromyalgia years ago at Mayo Clinic so some of the pain I have might be the fibro or central pain syndrome.

Since my diagnosis, when I pull a muscle doing something stupid or get injured (I fell in September and had a very bad ankle sprain) it takes a very long time to heal or it doesn't heal at all. There's clean science behind why this happens but there is also another side to exercising and moving around when you can. It's very important to keep your muscles and joints moving through stretching, swimming, or anything else gentle that your body can handle. Keeping a good range of motion is important. When you can no longer move something, someone should move it for you. I overdid it by not slowing down soon enough, stretching too vigorously, and not taking precautions. Now, I get my exercise walking to the pool (about 50 steps) using a flotation belt and "peddling" like I'm on a bicycle while moving my arms in a breast stroke motion, then walking back to my condo.

Finding something comfortable to wear on your feet is very important. You need enough support so your feet don't hurt when you walk.

Your muscles don't actually die with ALS, they just stop getting signals from the brain to move. If you injure a muscle that isn't already atrophied, you might be able to gain back function and get pain relief. My injured my right ankle and that was my "good" leg. It took a long time but I can walk on it again and it gained back about 70% range of motion. The sprain was so bad that it threw off my gait and threw my back out. I was in a tremendous amount of pain.

You need to make sure you keep good posture for as long as possible, then make sure you are positioned properly whether in bed, in a lift chair, or in a motorized wheelchair. Massage is good but make absolutely sure the massage therapist understands that you need gentle massage and you have ALS. I cannot be on my stomach during massage because I have neck and jaw issues but a good massage therapist can do a good job with me entirely on my back.

If you have access to a warm pool, it could make all the difference in pain.
 
Hi Mom,

My hubby just got the official probable/possible ALS diagnosis on the 30th. We, too, have to wait several weeks until we go back to the ALS clinic, so I am thinking that perhaps this is normal protocol.

Our time-line is this: Diagnosis: May 30th; follow-up appointment: sometime at the end of August, and another follow-up appointment one month after that. If the progression has been slow, we can wait 6 months after September until our next appointment.

As for your brace, hubby has one, too, for his drop foot and he must wear a long sock or some kind of legging as the brace scrapes his bare skin. Just thought I would let you know because, no, you do not heal as well with a non-functioning leg and if you get scrapes, they can continue to not heal with the rubbing that a brace can do. We use a diluted Dettol solution should you encounter any issues. It works so, so, but the best I have seen. He has had his scrape marks for about 4 months now.

I am so sorry you are going through this and I am thinking of you and your family.

Take care
 
If scraping with a brace + sock is an issue, there are also stretchy, slippery sleeves you can use to avoid "sticking" and scrapes, like GlideWear, or repurposing nylons, smooth leggings, etc.
 
I believe that my issue with my back and the brace was wearing it too long on the first day. I have been told, after wearing it, that i should wear for about 1 hour the 1st week and gradually increase. I haven't worn it since hurting myself but am happy to say that the my back discomfort is less. I was so worried that this was just how it would be going forward. I also know that I have not done any stretching since leaving for California. i have been doing a basic 20 minute YOGA sequence that I follow on an app and some stretching with a band. I will start that back up again and relieze how much it actually helps now that I have had this back muscle issue.

I will wear the brace again once my back is better - I can say that the shoes I needed to buy to fit the brace are really helping. Thinking of how hard it was walking with the drop foot in TOMS, which I love, these supportive shoes are a big help!
 
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