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karzy81

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Hi everyone. I know these questions are unanswerable but I guess I just want to hear people’s experience. During the summer of 2017 my dad started noticing his balance was off. He had a few falls into September and after a bad fall in nyc he decided to go see a neurologist. In March 2018 he was diagnosed with als and since then his walking has gotten progressively worse. He can walk with a cane but it’s very labored and he would really benefit from a walker. He has some weakness in his upper body but nothing that’s changing his day to day activities. My question really is, if his legs progressed as fast as they did, is that an indication of how he will continue to progress? He hasn’t shown any sign on breathing or swallowing issues. Thanks for all your support
 

lgelb

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Hi Karzy,

My first comment is, get the walker now -- before he falls. A rollator. And start him thinking about a wheelchair.

Second, no one can say whether the rate of progression in his legs will be similar in other body regions. Going from poor balance to unsteadiness with a cane in a year is actually slow progression, compared with many people. But progression doesn't follow a nice line, so it can slow down and speed up.

Best,
Laurie
 

Larrytbm

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Better to plan for the worst than hope for the best.

In 13 months my PALS has gone from walking to braces/cane to rollator to PWC. On a feeding tube and Trilogy 24/7. In fact we use two Trilogy machines so there is always a backup. The roll-in shower took 6 weeks to build and she had to climb steps to use a secondary shower, something she couldn't do today. I'm now installing several mounting points for a hoist and sling for future transfers when she cannot stand.

Also think wheelchair ramps, grab bars, hospital or adjustable bed and ADA sink. Text to speech system or other communication techniques and later eye controlled communications. Finally, a handicapped vehicle.
 

affected

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Karzy there is a sticky post at the top of the general section on anticipatory planning which might really help.

My husband was rapid progression and was gone within 11 months of diagnosis.

Trying to be ahead of the game and preventing falls can make the biggest difference.
 

lgelb

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Just to make the list slightly less intimidating, and I know what you meant, Larry -- everything has to be considered -- not all PALS end up buying a van if there are occasional rental or transit options, or needing a ramp if their home is accessible, or an ADA sink based on speed of progression. And it's increasingly likely that communication needs can be met with a head mouse, or later eye gaze used with an existing computer/device, without needing a new system.

Rule #1 = don't fall

Rule #2 = get breathing support as soon as you need it, including a BiPAP and a hospital bed

Rule #3 = leave yourself time to get whatever devices are going to enable you to maintain the level of social interaction you (in this case, your dad, karzy) want -- a wheelchair to get around, a way to communicate, ways to adapt hobbies or find new ones
 

Larrytbm

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Laurie is correct that my reply may be intimidating, but there is a lot to consider and reconsider as things change. A ramp may be as simple as a 4 ft temporary ramp at the front door. Best to have someone from the local ALS clinic inspect the house for suggestions. As for a handicapped vehicle, maybe I'm overly sensitive, but our trip to the emergency room on Sunday, Father's Day was ez at 1 am when rental or transit choices were not an option.
 

lgelb

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If ER trips were the only consideration for a van, I'd rely on ambulance services (granted, that would require being in an area with some). They (the ER trips) should not be a regular event.

The one ER trip Larry had, we walked/wheeled. That was a conscious choice in selecting where we rented and where we went for clinic.

I'm not saying there's anything wrong with accessible vans, just that many of us couldn't afford them and there's nothing wrong with that, either. Think about your dad's lifestyle holistically, karzy, and how he wants to play it out. Don't be afraid to have wide-ranging discussions where everything is on the table. Where "home" is, that's domino #1.
 

karzy81

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Thank you everyone. I remember when we got the diagnosis that the doctor said that there is no real way of knowing how fast you will progress but the rate at which your progressing usually stays the same if that makes any sense. Has anyone heard that? He basically said you’re not going to wake up one day with a new symptom.
 

lgelb

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The first part is true overall, but not throughout the course of ALS. Things broadly may go fast/slower/faster but as you know, some PALS only have a year or two and others have several.

The second is not. People do wake up able to walk very little, with breathing that is permanently worse, etc.
 

affected

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The only thing I have found predictable with ALS is that it is completely unpredictable.

I say this because we really just can't tell what will happen when. We all wish we could! It is hard to explain as we want to hold to something that makes sense, something solid.

Progression can speed up and slow down again, even plateau. Sometimes it seems linked to something, other times it just does what it does.

Because we really were rapid progression, I can say that pretty much every day did bring something more, or take something more is the correct way to say it. I was running to keep up, let alone try to keep ahead.

But what I learned was to live in today, be grateful for whatever we had at the given moment, and try to plan ahead without living in the future as it was racing to us fast enough. You may well have several years ahead. If you do, you still won't regret making the most of every day you got :)
 

captaingary

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My personal experience seems to be rapid. Can't say for sure as it is all REALLY new. Noticed weakening in my legs and walk last Dec. Had to stop work in June (should have stopped 2 months sooner) could not climb steps. Went to a cane 2 weeks later. Ordered a walker yesterday. I can feel the difference in my body on a daily basis. This morning my hips feel weaker. No problem breathing or swallowing, yet. Hands and arms are weak, but no problems, yet. ALS takes a lot of energy. Forcing myself to eat when I'm not hungry to keep calorie intake up. ALS increases metabolism and weight loss. My metabolism was high all my life, 6'5" 195 lbs is normal for me. Still 175 lbs. At this stage I can do most anything I want, as long as I don't have to stand or walk. I go to the community pool as often as I can. In the water I feel almost normal. Good for the body and even better for the mind. Nice to feel good for an hour. ALS team repeated over and over "conserve energy whenever possible". Now I know why, I tire very easily. I'm no expert that's for sure. Just sharing my short journey.
 
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