Well...a few thoughts on terror. Been doing a ton of thinking and talking with Joan about this. The terror that grips you with this thing has really little to do with death. I have faith and though there is grief to deal with there is really no terror concerning the hereafter.
The terror of AlS lies in the progressive loss of ability and function and the increasing speed at which it is happening. Right now I am only able to go a few feet with the cane alone on level ground...other than that it is the walker and scooter. More than 4 or 5 stairs are impossible without extreme effort. Being measured up for a power wheelchair in the next few days, so that is next. I have actually been able to deal with the loss of legs pretty well tho...I guess cause you see all kinds of folks dealing with that all the time.
The really scary thing for me is that my arms and hands are starting to go. The way it has worked with me is that first I have muscle twitching (fasiculations) in an area..say a leg or arm...followed later by cramping and loss of strength that just goes on and on...not fast but worse every day. Been experiencing that for some time now in my arms and hands,been starting to drop things, knock stuff over,etc. It is weird...your brain thinks you have lifted your hand 6 inches so you swing it over and discover as you knock over the coffee that it only went up 4 inches...makes a mess but so far at least I've missed the keyboard :)
The muscles in my stomach and chest have gone badly...leaves me with quite a little beer belly for the first time in my life :) The stomach muscles are the ones that push your diaphragm for breathing and coughing so it is not good though. When I try and cough now it is very difficult since there is no power behind it...not looking forward to colds that is for sure.
Been having some scary swallowing, choking things going on as well. Creates a gagging session that can go on for a while and leaves me pretty well unable to talk.
Been having the first cramps in my throat which is very weird too...it just kind of paralyses my throat muscles and makes it impossible to swallow or speak till it passes. Joan also noticed the first twitching that we have seen on my face this week....agghhhhh!
It is progressing on all fronts at once- some slower and some faster- but still all at once. And this will sadly soon be the good old days!! That is the terror of this beast.
When I compare how I am now to how I was at diagnosis Feb 1 this year( when I didn't even need a cane) ...and then extrapolate the same progression rate ahead another 8 months it is not a cheery thing:(
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We love to dance!
Then we sat on the edge of the earth, with our feet dangling over the side and MARVELLED that we had found each other! Not even ALS/MND (Amyotrophic Lateral Sclerosis or Motor Neurone Disease) or Lou Gehrig's Disease will keep us apart!
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Time of diagnosis
2 years 193 days (924 days) from diagnosis
Feb 1, 2008 - August 13, 2010
Feb 1, 2008 - August 13, 2010
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We love to dance!
About Us (Before ALS)
- Oanjay
- Winnipeg, Manitoba, Canada
- Our life has never a dull moment,even before ALS. Phone is always ringing or people over...that is what we enjoy! (Now it's Home Care and Medical Care) It is hard to separate what is my husband and what is myself as we love spending as much time as we can with one another. I do love the special manicures and pedicures that my wonderful husband gives me regularily.(Now I give the manicures and pedicures) Oh yeah...and those morning cups of coffee he serves me in bed as we plan the day ahead! (Now I serve the coffee to him in bed with a straw and even hold the cup for him) We love to dance together every chance we get! (Now...we still dance even though we dance with Rick in the wheelchair...he's pretty good at spinning that chair on the dancefloor...and now we just dance in our suite) And oh how we both love spending time with our kids and grandkids!!!! My pet peeve: mean people Rick's pet peeve: loud abrasive women
Almighty Hands
He holds me with almighty hands
He bears me up on eagles wings
And when my soul is burdened down
He sets my feet on holy ground
He sets my feet on holy ground
And there between the cross and crown
The King of Glory, He comes down
Anointing oil is in His hand
The healing balm of Gilead
He is the balm of Gilead
And in the presence of my pain
The foe without, the foe within
He beckons me to come and dine
And in my wounds pours oil and wine
And in my wounds pours oil and wine
ALS stories
Informational Links on ALS
Gadgets and tips we found to help!
- Boomerang pillow, gel pad for mask, salve
- Homemade hand splints
- Hanging basket for footboard
- Telephone earpiece/electric blanket
- Foot support for sleeping
- Open backed pants---I took old pants, shirts, pjs and cut them right up the back for easy slip on but if you want to buy more finished ones....
- Wrap around slipper/shoes
- Wheelchair leg strap support
Early Signs that something was just not right:
2007 (This is written in hindsight - at the time these early symptoms just seemed innocent and were easy to overlook)
January- Rick was always feeling tired.
June- Noticed his muscles began fasciculating (twitching) in right upper leg and increasing in intensity.
October- Fasciculations in both his legs. His feet felt heavy when he walked and had to think about putting one foot ahead of the other. Slight cough.
November- Fasciculations in his upper arms. Rick thinks he is just getting older and is really out of shape! :)
December- A few times I asked Rick if he had some a little to much to sip on as he had slurred speech. Found out later to be a symptom of ALS. Fasciculations in both legs and both arms. Shortness of breath. At the end of the month had a hard time getting up from a squat position.
2008
January- Fasciculations in both legs, arms, shoulders, hand tremors. Sleeping on 2-3 pillows a night. Waking up trying to catch his breath. Coughs. Muscle atrophy on both his upper legs and arms. Lost weight. Can't sit up from a squat or from a chair without using his arms. Has difficulty going up the stairs. Shortness of breath.
February- (Diagnosed Feb 1, 2008) Fasciculations in both legs, arms, shoulders, stomach, hands. Very tired and leg cramps. Not sleeping well. Clearing the throat, coughs.
March- Fell down the basement stairs. Using a cane now to help take the weight off his legs. Cane helps him get in and out of the car better also. Has cramps most of the time in his legs. Fatiqued easily. Clearing the throat. Foot dropping when walking across the floor. Finding his legs very weak.
April-Fell in the backyard as he walked through the snow. Very fatiqued by supper time. His walking is more laboured and in how he doesn't pick up his feet quite right when walking.
May - In a wheelchair to walk more than across the street and back. Uses the cane full time.
June-He holds himself with one hand on the counter while the other hand is doing the shaving or making the snack. He is getting more tired.
July- Stomach muscles have really let go. Looks like he has a big beer belly.
August-No longer uses a hand shaver as he has cut himself. Uses an electric shaver now. Gets extremely tired. He walks swaying from side to side and flips up his feet. He can't cross his legs without pulling up his legs with his hands first. Noticing more difficulty in swollowing. Does not like to eat dry food. Starting to have a harder time to cough. Fasciculations are continual in his body and now especially both hands and neck. Spills things more often. He has to sit on the bed to put on his pants.
September-He is so tired all the time. He is so concerned at how much fasiculations, shaking etc that are in his arms and hands now. He feels the weakness in them progressing more and more and fears not being able to use them. He has had coughing and coughing sessions and has really scared him as they have lasted a while before he can get his throat muscles to swollow and stop them. He looked at the Canadian Geese gathering to go down south and said "He really wondered if this would be the last time he would be able to watch them." He stopped taking Lithium this month. He feels his head is clearing up and can think better.
October-Suffers from nightmares, cramps in legs, arms, shoulders and neck. Eats less as it takes him more time and effort to chew. Legs are very skinny and where the muscles used to be there are now big hollows. Hates his pot belly from the muscles letting go in the stomach. Less and less upper strength. Stopped driving a car.
November-The walker, motorized chair,scooter, bed railing, raised toilet seat with side arms, are his dearly beloved aids.
December-We use the van now to get around. Rick's mobility has really taken a dive. He is so tired all the time. Spends his days in his motorized chair.
2009
January- Offically gave up his driver's liscense. I prop up the bottom of his feet to sleep as they fall forward. Little things are becoming so important in Rick's daily care. A commode/shower chair and hand shower is a must. A stationary motorized lift chair is another comfort item he now uses as a variance from the motorized chair. Placing all his toiletries near him are of most importance now.
February/March He is getting progressively weaker. Struggles more and more to sit himself up in bed. Some days experiences not being able to transfer from chair to chair or bed to chair etc. The Hoyer Lift is a must to fill in the gaps. He no longer can be left alone for fear of his falling. Used the lift to pick him off the floor. Shower is starting to be tiring for him. More muscle wasting is clearly visible on his legs, arms, back, shoulders, chest, stomach. His legs are very very skinny and weak.
May Muscle weakness progressing. No longer able to use scooter. In wheelchair or bed only. Breathing FVC at 85%.
September Unable to shower by himself at all. Can't sit up or roll over in bed. Hoyer lift only. Has circulating air mattress due to itching and comfort. Arms very weak 20% grip strength. Using mechanical arm. Breathing FVC now at 46%. Awaiting operation for feeding tube and bipap for breathing. Weight loss is now 30 lbs since diagnosis. Chewing very difficult and tiring. Swallowing good. Voice starting to change slightly when tired. Does not eat toast or really dry food. Arms only go up to top of head with great effort. Has to place arms on the arms of the wheelchair to comb hair, brush teeth. Drinks only 1/2 cups of liquid because of the weight of the cup. Using plastic because it is light weight. Doesn't put on his own toothpaste or reach for the tap himself. Can't dress himself. I cut his food for him. His knees flop down when rolling him over.
October Is using his bipap at night. Home Care coming in 2 hours a day. Brushing his teeth for him. Showering etc. Feet swelling and turning blue and cold.
November Had the "Peg"Feeding tube operation, can no longer feed himself, his arms are both very weak. He can't lift his arms up higher than his navel. Can no longer wipe own butt. Use a ribbon tie to keep his legs from spreading when he is in the wheelchair. Can't lift arms more than a couple of inches. Noticing his voice starting to crack at times and getting horser sounding. He is practising his stack breathing with the LVR also. Home care will be increased now to include twice a day visits for six days a week. Nurse now will be involved also. Use a blanket to cover him when going out as jacket is too hard to fit in wheelchair. No longer feeds himself. Can't use the plastic urinal by himself. Have to place it between his legs. Got HINI flu shot.
December Nose gets sore from bipap mask. Using bipap more. Big blood blisters from the end of the feeding tube valves. Wrap Kleenex around the ends so they don't touch his skin. Hands and feet are turning in more. Constipation a problem now. Have non invasive catheters. Neck muscles have become weaker. Put in plastic supports in hoyer sling.
Trip to hospital due to constipation. 2 reg enemas, 1 enema with tube, oral enema (took 10 hours for this one to work).
On a strick every 3 day regime. Home care in for 3 hours in am, 1 hr in pm. No Sundays or holidays.
2010
January Breathing down from FVC 46% to 28%. Uses the bipap all night and min 2 hrs during the day. Visually you can see his shoulders move up and down as he is using those muscles to help him breath. His face gets redish in colour. Having some itching spots in hands and neck. His hands can move only a bit. Enough to use remotes. They have to be placed in specific spots in front of him when in bed to beable to use them on his own. Only a few fingers are working on each hand. Arms slip from the armrests on the wheelchair. Hands need to be flattened while he sleeps so they don't curl. Sleeps with a walkie talkie. Added another box of food supplements, Resource 2 and Resource 1.5 to his diet. I have to scratch him. He gets very sore legs and feet. 141 lbs. Takes Amitriptyline (2), Senokot/s & Lactulose (for constipation), Use Fleet enemas & Microlax. Practices LVR 2x daily. I have to place his hands on the unit and flatten hand. Increase in voiding. Needs 24/7 care. He has been using a headset for telephoning now for a few months.
February He is barely able to use the sip and puff on the wheelchair. He now does not use the tv remote or telephone by himself. I now use DABS as he is unable to aim and angle for the urinal. He is 24/7 care. I am his hands and feet for him. He can't scratch an itch or even place his hand on the remote. I have to do everything for him. His voice is getting scratchy more and more. He doesn't eat bacon as it is too crumbly for him. Gets tired when eating so doesn't eat much. Likes puddings and soft things...easy things to eat!
Really cold things cause him to cough. He still has lots of problems with stinging eyes and have to wipe them.
Homecare can't feed, give medication, administer enemas or tube feed.
March
Has had much suffering with the bipap irritating his nose. Have been using Sleep comfort care gel pad on nose and is working great. Using Watkins salve to help with the skin breakages. Learning the sip and puff on his wheel chair. Now starting to use SmartNav, Dragon speaking. Learning head mouse.
Rec'd a new air circulating mattress KCI TheraKair Viso. Using bipap more and more during the day. His breathing has taken another dip this last few weeks.
One of the things I just remembered was from the base of the neck up would turn red right at the begining when we first noticed some fasciculations on his leg. He also experiences stinging eyes at different times. I use a wet cloth to wipe them to bring some relief as well as eye drops. Could be caused by leakage at times from the bipap but looking back I think it started before he used the bipap.
June
Full time bipap, night and day. Takes it off for only minutes at a time to eat, shower, dress etc. Takes Fentanyl to relieve sense of breathlessness for those short periods of time. His hands and feet are very swollen most of the time. Hands have been really turning in and pinkie fingers curling. Any kind of emotional stress causes him to be exhausted. Full time in Dabs. Very uncomfortable during the day and night. Eats only a bit now. 3 feedings a day. Face turns red quite a bit when on bipap. His eyes have stopped stinging now. Slumps to the left side all the time so we have to support his shoulder with pillows and head hangs down when tired. Very difficult to transport him in handi van as it is so bumpy for him. Has more hoarse voice during the day. Can't project voice for very long now.
July The dilaudid, Fentanyl are being increased weekly. The settings on the bipap are being increased. He eats 1 box and 1 can of Resource 2, 3 times a day. Drinks very little by mouth and only a few teaspoonfuls by mouth as he becomes to breathless. He has a pic inserted in his arm for the meds when swollowing becomes too much for him. His neck falls backwards when transferring him if we don't have it supported. The new seat back for the wheel chair that we rec'd from the ALS Society has little wings on the side of it to give him side support.
August - Bipap settings 16/4, using pressure sore bandages under the gel pad to avoid further skin breakage on the bridge of the nose. Noticing skin breakage on the upper part of his backside. Dealing with bathroom issues. Two enemas don't usually work to do the job. Dry mouth to the point of not being able to talk during the night. Wants me to sleep by him. Very vulnerable with his bipap and power going off. No longer showers only sponge baths. Is very tired. Meds have been doubled. Just realizing now we don't have long.
January- Rick was always feeling tired.
June- Noticed his muscles began fasciculating (twitching) in right upper leg and increasing in intensity.
October- Fasciculations in both his legs. His feet felt heavy when he walked and had to think about putting one foot ahead of the other. Slight cough.
November- Fasciculations in his upper arms. Rick thinks he is just getting older and is really out of shape! :)
December- A few times I asked Rick if he had some a little to much to sip on as he had slurred speech. Found out later to be a symptom of ALS. Fasciculations in both legs and both arms. Shortness of breath. At the end of the month had a hard time getting up from a squat position.
2008
January- Fasciculations in both legs, arms, shoulders, hand tremors. Sleeping on 2-3 pillows a night. Waking up trying to catch his breath. Coughs. Muscle atrophy on both his upper legs and arms. Lost weight. Can't sit up from a squat or from a chair without using his arms. Has difficulty going up the stairs. Shortness of breath.
February- (Diagnosed Feb 1, 2008) Fasciculations in both legs, arms, shoulders, stomach, hands. Very tired and leg cramps. Not sleeping well. Clearing the throat, coughs.
March- Fell down the basement stairs. Using a cane now to help take the weight off his legs. Cane helps him get in and out of the car better also. Has cramps most of the time in his legs. Fatiqued easily. Clearing the throat. Foot dropping when walking across the floor. Finding his legs very weak.
April-Fell in the backyard as he walked through the snow. Very fatiqued by supper time. His walking is more laboured and in how he doesn't pick up his feet quite right when walking.
May - In a wheelchair to walk more than across the street and back. Uses the cane full time.
June-He holds himself with one hand on the counter while the other hand is doing the shaving or making the snack. He is getting more tired.
July- Stomach muscles have really let go. Looks like he has a big beer belly.
August-No longer uses a hand shaver as he has cut himself. Uses an electric shaver now. Gets extremely tired. He walks swaying from side to side and flips up his feet. He can't cross his legs without pulling up his legs with his hands first. Noticing more difficulty in swollowing. Does not like to eat dry food. Starting to have a harder time to cough. Fasciculations are continual in his body and now especially both hands and neck. Spills things more often. He has to sit on the bed to put on his pants.
September-He is so tired all the time. He is so concerned at how much fasiculations, shaking etc that are in his arms and hands now. He feels the weakness in them progressing more and more and fears not being able to use them. He has had coughing and coughing sessions and has really scared him as they have lasted a while before he can get his throat muscles to swollow and stop them. He looked at the Canadian Geese gathering to go down south and said "He really wondered if this would be the last time he would be able to watch them." He stopped taking Lithium this month. He feels his head is clearing up and can think better.
October-Suffers from nightmares, cramps in legs, arms, shoulders and neck. Eats less as it takes him more time and effort to chew. Legs are very skinny and where the muscles used to be there are now big hollows. Hates his pot belly from the muscles letting go in the stomach. Less and less upper strength. Stopped driving a car.
November-The walker, motorized chair,scooter, bed railing, raised toilet seat with side arms, are his dearly beloved aids.
December-We use the van now to get around. Rick's mobility has really taken a dive. He is so tired all the time. Spends his days in his motorized chair.
2009
January- Offically gave up his driver's liscense. I prop up the bottom of his feet to sleep as they fall forward. Little things are becoming so important in Rick's daily care. A commode/shower chair and hand shower is a must. A stationary motorized lift chair is another comfort item he now uses as a variance from the motorized chair. Placing all his toiletries near him are of most importance now.
February/March He is getting progressively weaker. Struggles more and more to sit himself up in bed. Some days experiences not being able to transfer from chair to chair or bed to chair etc. The Hoyer Lift is a must to fill in the gaps. He no longer can be left alone for fear of his falling. Used the lift to pick him off the floor. Shower is starting to be tiring for him. More muscle wasting is clearly visible on his legs, arms, back, shoulders, chest, stomach. His legs are very very skinny and weak.
May Muscle weakness progressing. No longer able to use scooter. In wheelchair or bed only. Breathing FVC at 85%.
September Unable to shower by himself at all. Can't sit up or roll over in bed. Hoyer lift only. Has circulating air mattress due to itching and comfort. Arms very weak 20% grip strength. Using mechanical arm. Breathing FVC now at 46%. Awaiting operation for feeding tube and bipap for breathing. Weight loss is now 30 lbs since diagnosis. Chewing very difficult and tiring. Swallowing good. Voice starting to change slightly when tired. Does not eat toast or really dry food. Arms only go up to top of head with great effort. Has to place arms on the arms of the wheelchair to comb hair, brush teeth. Drinks only 1/2 cups of liquid because of the weight of the cup. Using plastic because it is light weight. Doesn't put on his own toothpaste or reach for the tap himself. Can't dress himself. I cut his food for him. His knees flop down when rolling him over.
October Is using his bipap at night. Home Care coming in 2 hours a day. Brushing his teeth for him. Showering etc. Feet swelling and turning blue and cold.
November Had the "Peg"Feeding tube operation, can no longer feed himself, his arms are both very weak. He can't lift his arms up higher than his navel. Can no longer wipe own butt. Use a ribbon tie to keep his legs from spreading when he is in the wheelchair. Can't lift arms more than a couple of inches. Noticing his voice starting to crack at times and getting horser sounding. He is practising his stack breathing with the LVR also. Home care will be increased now to include twice a day visits for six days a week. Nurse now will be involved also. Use a blanket to cover him when going out as jacket is too hard to fit in wheelchair. No longer feeds himself. Can't use the plastic urinal by himself. Have to place it between his legs. Got HINI flu shot.
December Nose gets sore from bipap mask. Using bipap more. Big blood blisters from the end of the feeding tube valves. Wrap Kleenex around the ends so they don't touch his skin. Hands and feet are turning in more. Constipation a problem now. Have non invasive catheters. Neck muscles have become weaker. Put in plastic supports in hoyer sling.
Trip to hospital due to constipation. 2 reg enemas, 1 enema with tube, oral enema (took 10 hours for this one to work).
On a strick every 3 day regime. Home care in for 3 hours in am, 1 hr in pm. No Sundays or holidays.
2010
January Breathing down from FVC 46% to 28%. Uses the bipap all night and min 2 hrs during the day. Visually you can see his shoulders move up and down as he is using those muscles to help him breath. His face gets redish in colour. Having some itching spots in hands and neck. His hands can move only a bit. Enough to use remotes. They have to be placed in specific spots in front of him when in bed to beable to use them on his own. Only a few fingers are working on each hand. Arms slip from the armrests on the wheelchair. Hands need to be flattened while he sleeps so they don't curl. Sleeps with a walkie talkie. Added another box of food supplements, Resource 2 and Resource 1.5 to his diet. I have to scratch him. He gets very sore legs and feet. 141 lbs. Takes Amitriptyline (2), Senokot/s & Lactulose (for constipation), Use Fleet enemas & Microlax. Practices LVR 2x daily. I have to place his hands on the unit and flatten hand. Increase in voiding. Needs 24/7 care. He has been using a headset for telephoning now for a few months.
February He is barely able to use the sip and puff on the wheelchair. He now does not use the tv remote or telephone by himself. I now use DABS as he is unable to aim and angle for the urinal. He is 24/7 care. I am his hands and feet for him. He can't scratch an itch or even place his hand on the remote. I have to do everything for him. His voice is getting scratchy more and more. He doesn't eat bacon as it is too crumbly for him. Gets tired when eating so doesn't eat much. Likes puddings and soft things...easy things to eat!
Really cold things cause him to cough. He still has lots of problems with stinging eyes and have to wipe them.
Homecare can't feed, give medication, administer enemas or tube feed.
March
Has had much suffering with the bipap irritating his nose. Have been using Sleep comfort care gel pad on nose and is working great. Using Watkins salve to help with the skin breakages. Learning the sip and puff on his wheel chair. Now starting to use SmartNav, Dragon speaking. Learning head mouse.
Rec'd a new air circulating mattress KCI TheraKair Viso. Using bipap more and more during the day. His breathing has taken another dip this last few weeks.
One of the things I just remembered was from the base of the neck up would turn red right at the begining when we first noticed some fasciculations on his leg. He also experiences stinging eyes at different times. I use a wet cloth to wipe them to bring some relief as well as eye drops. Could be caused by leakage at times from the bipap but looking back I think it started before he used the bipap.
June
Full time bipap, night and day. Takes it off for only minutes at a time to eat, shower, dress etc. Takes Fentanyl to relieve sense of breathlessness for those short periods of time. His hands and feet are very swollen most of the time. Hands have been really turning in and pinkie fingers curling. Any kind of emotional stress causes him to be exhausted. Full time in Dabs. Very uncomfortable during the day and night. Eats only a bit now. 3 feedings a day. Face turns red quite a bit when on bipap. His eyes have stopped stinging now. Slumps to the left side all the time so we have to support his shoulder with pillows and head hangs down when tired. Very difficult to transport him in handi van as it is so bumpy for him. Has more hoarse voice during the day. Can't project voice for very long now.
July The dilaudid, Fentanyl are being increased weekly. The settings on the bipap are being increased. He eats 1 box and 1 can of Resource 2, 3 times a day. Drinks very little by mouth and only a few teaspoonfuls by mouth as he becomes to breathless. He has a pic inserted in his arm for the meds when swollowing becomes too much for him. His neck falls backwards when transferring him if we don't have it supported. The new seat back for the wheel chair that we rec'd from the ALS Society has little wings on the side of it to give him side support.
August - Bipap settings 16/4, using pressure sore bandages under the gel pad to avoid further skin breakage on the bridge of the nose. Noticing skin breakage on the upper part of his backside. Dealing with bathroom issues. Two enemas don't usually work to do the job. Dry mouth to the point of not being able to talk during the night. Wants me to sleep by him. Very vulnerable with his bipap and power going off. No longer showers only sponge baths. Is very tired. Meds have been doubled. Just realizing now we don't have long.