Rule #1: Don't fall
When walking becomes dicey, even with a wobble or two, it's time for either a cane (the kind with a tripod at the base, not just a candy stick) or a rollator. It only takes one wobble to fall.
The rollator should have big wheels, at least 10" in back and good thick tires. So it's going to cost something. You're not going to be well supported by a baby stroller. Also make sure you are actually strong enough (with some margin) to use the hand brakes or are on level ground where you can stop without using the brakes. The handles should adjust to the right height for you, not just "close." So know before you buy how far apart the "notches" are.
When you wobble on the rollator, it's time to put in the order for a power chair, and meanwhile to get or start using a manual wheelchair. Do not try to push yourself, even if you can. Let your caregiver push you so you can save your energy for more important things. If you don't make a big thing of it, no one else has to.
Yes, it's humiliating at first, but imagine if you made your ALS worse by falling (falls do). How would your caregiver feel then?
For the same reason, if you can't handle stairs, slopes, hills, getting up from the toilet or out of bed safely, find another plan. Don't just "give it a try!"
A CAPS or other "aging in place" specialist, or OT, can help you plan out home renovations such as ramps, wider doors, bathroom accessibility and more, if that is the plan. Make sure they know about ALS, how progressive it is, etc. Also, at some point, many PALS stop showering because transferring is too hard/the shower chair can't be comfortable enough, and/or the process is too cold. So a "fake" threshold bridge from ShowerBuddy or another company may be more practical than a full renovation, depending on where you live and how much value an accessible shower adds to your home.
An accessibility specialist can also help you evaluate if your current home will work at all. Note — some people assume they will install a stairlift to get to the next floor and all will be good. At some point, PALS do not have enough neck, back, or core strength to make a stairlift work.
Rule #2: If you fall, plan before, not as you get back up
If you are here because you or someone you help has fallen, do NOT pull up a YouTube video showing someone being lifted by their wrists and ankles, onto a wheelchair or any other surface! That can cause fractures, dislocations, more falls, and death.
If you might have a fracture or spine injury, lose feeling in any body part, are bleeding heavily, have chest pain, or are dizzy or nauseated, call 911 instead so you can be transferred safely. Firefighters and EMTs are happy to help stabilize you at home if possible and it is always your choice, once you are in a stable position and assessed, whether you go to a hospital or not.
First, see if someone can wrap their arms around you, protecting your joints, and gently stand you up or sit you up. This may be in steps — first lifting you against a small table, onto or against an ottoman, step, etc. and then the rest of the way up, to a recliner, wheelchair, or sling to go up into a lift. There is NO RUSH!!!
If you do call for help, be sure the first responders have a copy of the emergency protocol for dealing with PALS.
When walking becomes dicey, even with a wobble or two, it's time for either a cane (the kind with a tripod at the base, not just a candy stick) or a rollator. It only takes one wobble to fall.
The rollator should have big wheels, at least 10" in back and good thick tires. So it's going to cost something. You're not going to be well supported by a baby stroller. Also make sure you are actually strong enough (with some margin) to use the hand brakes or are on level ground where you can stop without using the brakes. The handles should adjust to the right height for you, not just "close." So know before you buy how far apart the "notches" are.
When you wobble on the rollator, it's time to put in the order for a power chair, and meanwhile to get or start using a manual wheelchair. Do not try to push yourself, even if you can. Let your caregiver push you so you can save your energy for more important things. If you don't make a big thing of it, no one else has to.
Yes, it's humiliating at first, but imagine if you made your ALS worse by falling (falls do). How would your caregiver feel then?
For the same reason, if you can't handle stairs, slopes, hills, getting up from the toilet or out of bed safely, find another plan. Don't just "give it a try!"
A CAPS or other "aging in place" specialist, or OT, can help you plan out home renovations such as ramps, wider doors, bathroom accessibility and more, if that is the plan. Make sure they know about ALS, how progressive it is, etc. Also, at some point, many PALS stop showering because transferring is too hard/the shower chair can't be comfortable enough, and/or the process is too cold. So a "fake" threshold bridge from ShowerBuddy or another company may be more practical than a full renovation, depending on where you live and how much value an accessible shower adds to your home.
An accessibility specialist can also help you evaluate if your current home will work at all. Note — some people assume they will install a stairlift to get to the next floor and all will be good. At some point, PALS do not have enough neck, back, or core strength to make a stairlift work.
Rule #2: If you fall, plan before, not as you get back up
If you are here because you or someone you help has fallen, do NOT pull up a YouTube video showing someone being lifted by their wrists and ankles, onto a wheelchair or any other surface! That can cause fractures, dislocations, more falls, and death.
If you might have a fracture or spine injury, lose feeling in any body part, are bleeding heavily, have chest pain, or are dizzy or nauseated, call 911 instead so you can be transferred safely. Firefighters and EMTs are happy to help stabilize you at home if possible and it is always your choice, once you are in a stable position and assessed, whether you go to a hospital or not.
First, see if someone can wrap their arms around you, protecting your joints, and gently stand you up or sit you up. This may be in steps — first lifting you against a small table, onto or against an ottoman, step, etc. and then the rest of the way up, to a recliner, wheelchair, or sling to go up into a lift. There is NO RUSH!!!
If you do call for help, be sure the first responders have a copy of the emergency protocol for dealing with PALS.