Syekick
Active member
- Joined
- Apr 20, 2012
- Messages
- 89
- Diagnosis
- 04/2012
- Country
- US
- State
- TN
- City
- Nashville
Below is a list of things that make my life better. Some I no longer use but were well worth it for a time. In no particular order, just as they occur to me as I wrote this. I've had ALS for nearly 3 years but wasn't diagnosed till 9 months ago. I am fortunate to keep getting my medical insurance to buy things that I get my ALS Dr to script and generally stay months ahead of the next disabling condition.
Newest big thing - BLANKET SUPPORT - For $28 this fits at the foot of the bed, under the mattress and between the footboard and mattress as the piece rises up. Above the bed the frame under the mattress supports a C shaped piece that is big enough for my size 12 feet. My left leg needs help to move and my right is extremely weak. By keeping the covers up off of my feet I am able to get into bed and postion my legs and feet so much easier. Also, both feet have drop foot and so have no muscle control of feet or toes. Without the blanket support when I lay on my back the toes are forced to curl over from the weight of the blanket. The blanket support is fantastic! We have three cats and they love it too. My wife keeps the sheets/blanket pulled over after she makes the bed so that when I want to go back to bed it's one less thing for me to deal with. With the blanket support on the end and the covers pulled back a cat cave is created. So there is always a cat sitting in there, looking around the corner over the foot of the bed as cats just do.
Canes/Rollator - Poor balance and weak legs. These kept me from falling down. The rollator got me around till I got a power wheel chair. No longer in use.
Manual Wheelchair - Used until my arm strength went out. Gave me mobility without fatigue. No longer in use.
Power Wheelchair - This greatly reduced fatigue because I no longer had to walk. As I don't have the arm strength to move a manual wheelchair this grants me freedom and mobility in life. I strongly suggest the power lift as it will raise and lower you 10". This makes adjusting the chair height to the bed or recliner height easier for transfers and perfect for transfer boards.
Handicap Van We had to chew into savings to buy and old but reliable van. Not a beauty but it works fine. This has gives me a chance to get out of the house and go places. Gatlingburg, Pensacola Beach, FL for example. It also lets me escort the wife grocery shopping and running errands. Plus, we can still go to the movies. We went to see Wreck it Ralph with the grand kids yesterday. Wonderful
Portable BiPap My PWC has a shelf on the lower piece back where my wife can move my bipap to. It also has a DC adapter on the PWC which plugs into the BIPAP. This means that when we travel or out running errands I can use my BiPap to combat fatigue.
BIPAP Emergency Electrical Power So if you have to use a BIAP, what are you going to do if power goes out for 20 minutes, 5 hours, or three days? Here are my solutions
A. Car Jump Starter with Cigarette Adapter Plug I have the Stanley 500 AMP unit. This device has two purposes. It provides power to my BIPAP when we are making a trip longer than 30 minutes. By plugging my BiPAP (mounted on the PWC) into the car jumper it keeps from draining the PWC battery on long trips. How long does it last? I've used it for 16 hours without recharge and the battery indicator was still at 50%. This is the second reason for the jumper, an emergency backup for my BIPAP.
B. Battery Backup with Surge Protection I have the APS 1500VA battery backup. These are the type of units used on personal computers and computer servers. I have one beside the bed with the BIPAP AC cord plugged into it at all times. This way, if we even have a momentary power failure overnight, I can keep right on sleeping. I expect this unit to last for 10-15 hours. Between this unit and the jump starter I feel I have about three nights worth of sleep from emergency power.
BiPap - Used when I am reclined due to weak lung muscles. Greatly reduced fatigue. I strongly suggest that an ALS patient also use it when they begin yawning frequently. I believe that is a indication of CO2 build up which causes sleepiness and fatigue. During the day if I start yawning I either sit and use it or simply take a nap.
BiPap Masks I need a full face mask to sleep with as I get better respiration. However, during the time I want to read in bed or at times like now, when I'm in the PWC sitting at the computer I need reading glasses. I also like to snack at those times too. A nasal mask that is designed to keep the straps from around the eyes allows me to wear reading glasses or snack as needed. I can also speak with the nasal mask on but my voice is a bit odd sounding. So, I suggest both a full face mask for sleeping and a nasal mask for daily activity when you feel the need for more air. I bought the parts for the mask I chose on line for about $70 and assembled the four pieces. Well, my wife did that is. By purchasing the parts rather than the complete mask saved about $100.
Daytime Naps - I usually sleep 1-2 hours most afternoons. While I don't feel excessively sleepy or fatigued when I do, I believe that it gives me rest, better energy, and reduces overall fatigue that simply builds up during the 18 hour daytime activity.
Diabetic Socks I stay cold a lot and love to wear socks to keep the feet and legs warm. I went to diabetic socks a long time back as they are easy to get on and tend to stay up almost to my knee with little effort.
Stander pole This pole mounts between the ceiling and floor and gives you something to grip as you get up from a seated position. This, while I still could do it easily, I used it to assist me with transfers out of bed into the PWC, or from the PWC into my recliner in the living room. I do caution you though to ensure that the pole stays tightened firmly. The one in the bedroom was between ceiling and carpeted floor. After several months the carpet compress and I noticed that the top piece had moved over a bit. I should have asked my son to tighten it but kept forgetting to do so. The pole finally feel over one day. Luckily I simply dropped back into bed and the pole, which is heavy metal fell on the bed beside me. So, if you get one, be smarter than me.
Transfer boards - These provide a safe transfer by sliding from seat to seat. Types: Wooden transfer boards are inexpensive and a great help.
A toilet transfer board has a C on one end that goes over the toilet. This makes it so easy to go from the PWC onto the toilet, especially public toilets which don't have as many handholds or the raised toilet height.
My favorite is the Beasy Transfer Board which is plastic and has a large disk in it which slides from one end to the other. I had to buy this one.
Hoyer Lift On hand but only used once when I messed up and wound up on the floor. I can't get up of course. This is already on hand just for that purpose rather than calling 911. Maybe I'll never need to use it for every transfer time. Maybe I will. It is what it is.
Hospital Bed On hand, taking up room, and not used, yet. We will be rearranging the MBR within next 60 days and getting rid of the king size bed. My wife will be going into a full sized bed and we will put the hospital bed next to it. At least after 40 years we can still sleep side by side that way.
Trapeze This device mounts on the headboard or a floor stand. While I still have the grip and arm strength it is what makes life easier to roll over in bed, better now with the blanket support over my feet. It also allows for me to pull myself up to a seated position. Due to back muscle weakness, I can hang on to this when sitting up and not just fall over backwards over the bed.
Cough Assist This device is wonderful when I have a cold or just daily when I have to cough up phlegm. My pulmonologist requires me to use it to expand the lungs 10 times a day with a minimum force of 40 inhale. My FVC went from 63% to 78% within three months of starting on the daily lung exercises. I don't expect it to keep me there of course but do feel positive that it will keep my lungs clear and doing the best they can up until the day when I have no lung muscle control.
Urinal With ALS I'm lucky to be a man. The use of a urinal is quite easy either seated or laying. When we travel it's what I use rather than a public toilet. A blanket throw over my lap and I can sit in the parking lot and do the business without terrifying or revolting people. At the theater, mall, or hospital Dr visits, the urinal is carried along and I just go into the toliet and do the job seated in there. My wife suggested I go to this method several months before I finally did. Using the urinal ended the frequent and unsteady/unsafe transfers I used to have to do every couple of hours. She is a smart woman.
Commode Toilet Seat This will have little use after we have the MBR bathroom modified minimally for me. The door needs to be enlarged and the tub removed and a roll in shower installed.
Roll In Shower The wife and I decided we would install a roll in shower a years before ALS came along. We both had already decided it would be a nice upgrade to the bathroom and much easier for us to us as we got older. Good thing money was sat aside just for this back during my working days. Work starts in a few weeks.
Adaptive Eating Utensils Due to weakened hand strength, a fork or spoon with a huge handle makes eating less of a chore.
Bibs While seated, coming to a full upright position to eat makes breathing difficult and me uncomfortable. I prefer to be reclined. Due to that I have to keep a bib over me to keep the food off of my cloths. These were a good idea.
IPAD I can still type but have decreased from 55 WPM down to about 15 or so now. The IPAD is nice because I can see that as long as I have control of just one finger I will still be able to surf the web, email, and put up posts on this forum. I strongly suggest this for those of you who embrace that lifestyle as I do. I just won't be able to play my computer games on the IPAD whenever the hands go. Well, I'll be looking around for alternatives and if affordable I'll continue on.
Are there more things I use. Oh yes, they are smaller and have less impact and thus just don't come to mind as easily. I hope you find something useful in all of this.
Newest big thing - BLANKET SUPPORT - For $28 this fits at the foot of the bed, under the mattress and between the footboard and mattress as the piece rises up. Above the bed the frame under the mattress supports a C shaped piece that is big enough for my size 12 feet. My left leg needs help to move and my right is extremely weak. By keeping the covers up off of my feet I am able to get into bed and postion my legs and feet so much easier. Also, both feet have drop foot and so have no muscle control of feet or toes. Without the blanket support when I lay on my back the toes are forced to curl over from the weight of the blanket. The blanket support is fantastic! We have three cats and they love it too. My wife keeps the sheets/blanket pulled over after she makes the bed so that when I want to go back to bed it's one less thing for me to deal with. With the blanket support on the end and the covers pulled back a cat cave is created. So there is always a cat sitting in there, looking around the corner over the foot of the bed as cats just do.
Canes/Rollator - Poor balance and weak legs. These kept me from falling down. The rollator got me around till I got a power wheel chair. No longer in use.
Manual Wheelchair - Used until my arm strength went out. Gave me mobility without fatigue. No longer in use.
Power Wheelchair - This greatly reduced fatigue because I no longer had to walk. As I don't have the arm strength to move a manual wheelchair this grants me freedom and mobility in life. I strongly suggest the power lift as it will raise and lower you 10". This makes adjusting the chair height to the bed or recliner height easier for transfers and perfect for transfer boards.
Handicap Van We had to chew into savings to buy and old but reliable van. Not a beauty but it works fine. This has gives me a chance to get out of the house and go places. Gatlingburg, Pensacola Beach, FL for example. It also lets me escort the wife grocery shopping and running errands. Plus, we can still go to the movies. We went to see Wreck it Ralph with the grand kids yesterday. Wonderful
Portable BiPap My PWC has a shelf on the lower piece back where my wife can move my bipap to. It also has a DC adapter on the PWC which plugs into the BIPAP. This means that when we travel or out running errands I can use my BiPap to combat fatigue.
BIPAP Emergency Electrical Power So if you have to use a BIAP, what are you going to do if power goes out for 20 minutes, 5 hours, or three days? Here are my solutions
A. Car Jump Starter with Cigarette Adapter Plug I have the Stanley 500 AMP unit. This device has two purposes. It provides power to my BIPAP when we are making a trip longer than 30 minutes. By plugging my BiPAP (mounted on the PWC) into the car jumper it keeps from draining the PWC battery on long trips. How long does it last? I've used it for 16 hours without recharge and the battery indicator was still at 50%. This is the second reason for the jumper, an emergency backup for my BIPAP.
B. Battery Backup with Surge Protection I have the APS 1500VA battery backup. These are the type of units used on personal computers and computer servers. I have one beside the bed with the BIPAP AC cord plugged into it at all times. This way, if we even have a momentary power failure overnight, I can keep right on sleeping. I expect this unit to last for 10-15 hours. Between this unit and the jump starter I feel I have about three nights worth of sleep from emergency power.
BiPap - Used when I am reclined due to weak lung muscles. Greatly reduced fatigue. I strongly suggest that an ALS patient also use it when they begin yawning frequently. I believe that is a indication of CO2 build up which causes sleepiness and fatigue. During the day if I start yawning I either sit and use it or simply take a nap.
BiPap Masks I need a full face mask to sleep with as I get better respiration. However, during the time I want to read in bed or at times like now, when I'm in the PWC sitting at the computer I need reading glasses. I also like to snack at those times too. A nasal mask that is designed to keep the straps from around the eyes allows me to wear reading glasses or snack as needed. I can also speak with the nasal mask on but my voice is a bit odd sounding. So, I suggest both a full face mask for sleeping and a nasal mask for daily activity when you feel the need for more air. I bought the parts for the mask I chose on line for about $70 and assembled the four pieces. Well, my wife did that is. By purchasing the parts rather than the complete mask saved about $100.
Daytime Naps - I usually sleep 1-2 hours most afternoons. While I don't feel excessively sleepy or fatigued when I do, I believe that it gives me rest, better energy, and reduces overall fatigue that simply builds up during the 18 hour daytime activity.
Diabetic Socks I stay cold a lot and love to wear socks to keep the feet and legs warm. I went to diabetic socks a long time back as they are easy to get on and tend to stay up almost to my knee with little effort.
Stander pole This pole mounts between the ceiling and floor and gives you something to grip as you get up from a seated position. This, while I still could do it easily, I used it to assist me with transfers out of bed into the PWC, or from the PWC into my recliner in the living room. I do caution you though to ensure that the pole stays tightened firmly. The one in the bedroom was between ceiling and carpeted floor. After several months the carpet compress and I noticed that the top piece had moved over a bit. I should have asked my son to tighten it but kept forgetting to do so. The pole finally feel over one day. Luckily I simply dropped back into bed and the pole, which is heavy metal fell on the bed beside me. So, if you get one, be smarter than me.
Transfer boards - These provide a safe transfer by sliding from seat to seat. Types: Wooden transfer boards are inexpensive and a great help.
A toilet transfer board has a C on one end that goes over the toilet. This makes it so easy to go from the PWC onto the toilet, especially public toilets which don't have as many handholds or the raised toilet height.
My favorite is the Beasy Transfer Board which is plastic and has a large disk in it which slides from one end to the other. I had to buy this one.
Hoyer Lift On hand but only used once when I messed up and wound up on the floor. I can't get up of course. This is already on hand just for that purpose rather than calling 911. Maybe I'll never need to use it for every transfer time. Maybe I will. It is what it is.
Hospital Bed On hand, taking up room, and not used, yet. We will be rearranging the MBR within next 60 days and getting rid of the king size bed. My wife will be going into a full sized bed and we will put the hospital bed next to it. At least after 40 years we can still sleep side by side that way.
Trapeze This device mounts on the headboard or a floor stand. While I still have the grip and arm strength it is what makes life easier to roll over in bed, better now with the blanket support over my feet. It also allows for me to pull myself up to a seated position. Due to back muscle weakness, I can hang on to this when sitting up and not just fall over backwards over the bed.
Cough Assist This device is wonderful when I have a cold or just daily when I have to cough up phlegm. My pulmonologist requires me to use it to expand the lungs 10 times a day with a minimum force of 40 inhale. My FVC went from 63% to 78% within three months of starting on the daily lung exercises. I don't expect it to keep me there of course but do feel positive that it will keep my lungs clear and doing the best they can up until the day when I have no lung muscle control.
Urinal With ALS I'm lucky to be a man. The use of a urinal is quite easy either seated or laying. When we travel it's what I use rather than a public toilet. A blanket throw over my lap and I can sit in the parking lot and do the business without terrifying or revolting people. At the theater, mall, or hospital Dr visits, the urinal is carried along and I just go into the toliet and do the job seated in there. My wife suggested I go to this method several months before I finally did. Using the urinal ended the frequent and unsteady/unsafe transfers I used to have to do every couple of hours. She is a smart woman.
Commode Toilet Seat This will have little use after we have the MBR bathroom modified minimally for me. The door needs to be enlarged and the tub removed and a roll in shower installed.
Roll In Shower The wife and I decided we would install a roll in shower a years before ALS came along. We both had already decided it would be a nice upgrade to the bathroom and much easier for us to us as we got older. Good thing money was sat aside just for this back during my working days. Work starts in a few weeks.
Adaptive Eating Utensils Due to weakened hand strength, a fork or spoon with a huge handle makes eating less of a chore.
Bibs While seated, coming to a full upright position to eat makes breathing difficult and me uncomfortable. I prefer to be reclined. Due to that I have to keep a bib over me to keep the food off of my cloths. These were a good idea.
IPAD I can still type but have decreased from 55 WPM down to about 15 or so now. The IPAD is nice because I can see that as long as I have control of just one finger I will still be able to surf the web, email, and put up posts on this forum. I strongly suggest this for those of you who embrace that lifestyle as I do. I just won't be able to play my computer games on the IPAD whenever the hands go. Well, I'll be looking around for alternatives and if affordable I'll continue on.
Are there more things I use. Oh yes, they are smaller and have less impact and thus just don't come to mind as easily. I hope you find something useful in all of this.
.
