swalker
Very helpful member
- Joined
- Dec 11, 2014
- Messages
- 1,580
- Reason
- DX MND
- Diagnosis
- 07/2014
- Country
- US
- State
- CO
- City
- Vail
Actually, that looks like a reindeer outfit. Reindeer have antlers, so would it be Antlery
?Steve
Another calling all PALS thread! ( PALS only post please)
- Status
Actually, that looks like a reindeer outfit. Reindeer have antlers, so would it be Antlery
?Steve
tripete
Very helpful member
- Joined
- Dec 5, 2014
- Messages
- 1,002
- Reason
- PALS
- Diagnosis
- 12/2014
- Country
- US
- State
- PA
- City
- Lancaster
Yep my rolator does have a flip seat. Still hate it though. I use it nearly all the time now though. I put my coffee on the seat or anything else I need to move. I was not hurt to badly, bounced off the refrigerator and wall before the floor, I guess it slowed me down. I think with bad balance, weakness, and being stubborn falls will happen. I have stubbornness in abundance.
Attitude is something thats hard to keep up. Our lives are in a spiraling decline with the end looking like a distant finish line that we can see but that we must go through many tortures before we get to. Comfort comes in doing for others.
Attitude is something thats hard to keep up. Our lives are in a spiraling decline with the end looking like a distant finish line that we can see but that we must go through many tortures before we get to. Comfort comes in doing for others.
- Joined
- Nov 18, 2014
- Messages
- 4,887
- Reason
- PALS
- Diagnosis
- 08/2015
- Country
- US
- State
- South
- City
- The Beach
Firefighter58
Senior member
- Joined
- Jun 21, 2016
- Messages
- 728
- Reason
- PALS
- Diagnosis
- 05/2014
- Country
- CA
- State
- ON
- City
- Oakville
Your still HAWT..... .cute dog too.
Al
Al
Firefighter58
Senior member
- Joined
- Jun 21, 2016
- Messages
- 728
- Reason
- PALS
- Diagnosis
- 05/2014
- Country
- CA
- State
- ON
- City
- Oakville
Not too happy today, we got snow last night and this will be the first year that I can not clear the driveway with my snow blower. This afternoon I am told that I have to go out and show my wife how to do it. Did it last year but I was a bit shaky so this year I think not. Wife don't mind though, she wants to clear the patio for the 15 squirrels that she feeds every day. She also took over the grass cutting duties at home here this year but at the cottage I still do it as we have a riding mower up there.
Al
Al
Texas Quilter
Active member
- Joined
- Aug 16, 2014
- Messages
- 90
- Reason
- PALS
- Diagnosis
- 09/2013
- Country
- US
- State
- Tx
- City
- Amarillo
Thankful that my progression has been slow. My biggest problem is breathing. I can still walk, - not for long & not very far at all. Sometimes its hard to get from one end of the house to the other. Sometimes its not so bad. I use a cane and a rollator and a scooter for going to any big box stores, airports, cruise ships etc. I cried when my rollator arrived, but finally realized that this is something God has provided to help me out. Still, its not always easy to accept. My arms are getting a lot weaker - I can't stir things when I'm cooking. My core is getting weaker, too as I can roll over in bed onto one side without a lot of difficulty. And then there's the overall pain (which I know none of us is supposed to have!!!). But all in all, after 3 years since diagnosis I'm doing fairly well. Have only fallen once! Glad to be able to read all the other posts; sorry some are having so much more trouble than I am.
Dianne
Dianne
ShiftKicker
Moderator
- Joined
- Mar 16, 2015
- Messages
- 8,377
- Reason
- DX UMND/PLS
- Diagnosis
- 06/2015
- Country
- CA
- State
- BC
- City
- Vancouver
Al, odd how a chore can turn into a fond memory when you're no longer able to do it. I had to content myself with knocking snow off the bushes and laying salt down while I watched someone else do the snow clearing around our place. I felt guilty I couldn't do it any more. I empathize with your sense of loss.
Those are some lucky squirrels! They get a bare patio on which to dine on free food. Life is good.
I have a single little Anna's hummingbird that has chosen to overwinter on our back patio. It sits out there about 5' from its sugar water and spends valuable energy chasing off any other hummingbird interlopers. For something so cute and tiny, they sure can be jerks. We strung up incandescent Christmas lights and he sits next to a red bulb for warmth.
Those are some lucky squirrels! They get a bare patio on which to dine on free food. Life is good.
I have a single little Anna's hummingbird that has chosen to overwinter on our back patio. It sits out there about 5' from its sugar water and spends valuable energy chasing off any other hummingbird interlopers. For something so cute and tiny, they sure can be jerks. We strung up incandescent Christmas lights and he sits next to a red bulb for warmth.
- Joined
- Nov 18, 2014
- Messages
- 4,887
- Reason
- PALS
- Diagnosis
- 08/2015
- Country
- US
- State
- South
- City
- The Beach
Dianne, It's always good to hear from you, especially since it seems you're doing pretty well. You're always in my prayers.
- Joined
- Nov 18, 2014
- Messages
- 4,887
- Reason
- PALS
- Diagnosis
- 08/2015
- Country
- US
- State
- South
- City
- The Beach
Al, I get it. I used to pride myself on my cooking and baking. Everything from scratch and I really enjoyed entertaining and going all out for people. Now I count it a good day if I can throw some ground turkey and veggies into the crock pot and turn it on.
I had a couple of days with reduced back pain so I ran around the condo doing as much as I could. I even walked down to the mail room using my wheelchair as a walker. I hooked up an apple TV and a Roku and stacked some crates on a shelf. It felt so good to be productive but, by the end of the afternoon, I couldn't walk. My ankles just gave up on me.
I've never considered myself an envious person but I look at the 90-year olds in my condo still playing 9 holes of golf at 7:30 every morning. I miss that. I miss running on the beach. I miss scuba diving. And I feel guilty because I had years of good physical health and some poor kids are poor with severe disabilities. I just can't reconcile my feelings to my situation.
KW1234
Distinguished member
- Joined
- Sep 28, 2016
- Messages
- 269
- Reason
- PALS
- Diagnosis
- 10/2016
- Country
- US
- State
- OR
- City
- Hillsboro
When I look back over this year, it has been a wild ride for me.
Early in the year, I had been a gym rat, cycling and working out 3-4 times a week, and PT session following PRP injections in my knee to repair a torn meniscus. My first indication of ALS was a blood test in May where my CK levels were elevated. I thought it was due to my workouts and didn't think much of it. Next in June, my PT noticed that my strength in my legs was weakening, which just increased the weight load I was working with in the gym. My gait shifted in June as well, but I thought it was bad habits from limping with my knee. By July, I was having trouble climbing stairs and feeling weak after walking distances. I still had know idea ALS was lurking, and we had a very busy summer, with long bike rides on the weekends, and hikes in the mountains. My husband and I bought new bikes in March and were having a great time cycling trails in OR, WA and Vancouver, BC. Here I thought the weakness might be from some of the supplement I was taking, and I was suspending one by one for two weeks at a time to see if it would make a distance.
August was a wake up call for me. We finished a 25 mile ride down in Southern Oregon, and when I was getting off my bike, I couldn't support myself or balance myself and met the pavement hard- cracked a rib, bruised a shoulder and knee, some good scrapes and a bruised ego. I decided at that point to go see my doctor. She referred me to a neurologist, but didn't get in to see him until early September. In the last couple weeks of August, we traveled to Boston to a national rowing event that my husband rowed in, went to the Minnesota Fair with the grandchildren (including walking around 10,000 + steps which was exhausting). I nearly fell twice at Logan airport, and my speech was slurring such that people thought I had been drinking. By the time I went to the neurologist, I had been googling my symptoms and had a sense that it was either a brain tumor or ALS.
After six weeks of testing, and a second neurologist (ALS expert), I received the diagnosis in October. Talk about life slapping you on the side of the head. Being an engineer, I spent a couple days in tears feeling sorry for myself and getting my paperwork in for Social Security and Medicare benefits. Suspending the interviews with companies that had been recruiting me (I was laid off at the end of July) and trying to figure out what to do next. I made a conscious choice, that while this disease would ravage my body, I would not let it ravage my spirit. I will live through this the best I can, I will try to find something to be joyful of every day.
Since then, we have sold our three level town house, and bought a new house that we are remodeling. I am getting progressively weaker, my speech is just about gone. I'm not afraid of the dying process, (I've had plenty of asthma attacks where I pass out.), I am saddened that I have limited time with my husband, kids and grand kids, but I am determined to make the best of this time. I worry about the need for care givers and how we pay for that as my husband is still working. I am learning to say yes to offers of help from others, and I am learning to let little things go.
As we look forward to 2017, I wonder if I will make it to Christmas next year, as my progression seems to be pretty fast. Over a year ago, we booked a 3 week Viking cruise in March to Italy, Greece and Israel to celebrate our 35th anniversary and I don't know if I will be able to go. I have a clinic day in January and will see what the doctors suggest. I am hopeful we can do this, but would not want to get sick in a foreign country. In July my son and his fiance from Singapore will be coming here to Oregon for a wedding ceremony. They had selected a resort in Laos to do the wedding but decided to have a smaller ceremony here in the US and a second one in Laos for their Asian friends. (They both live and work in Bangkok). I am hopeful I will be able to see him married.
I feel blessed to have had a such a enriching 2016 despite ALS and I look forward to 2017 with hope.
Merry Christmas to my fellow PALS. May you find strength and joy this season.
Early in the year, I had been a gym rat, cycling and working out 3-4 times a week, and PT session following PRP injections in my knee to repair a torn meniscus. My first indication of ALS was a blood test in May where my CK levels were elevated. I thought it was due to my workouts and didn't think much of it. Next in June, my PT noticed that my strength in my legs was weakening, which just increased the weight load I was working with in the gym. My gait shifted in June as well, but I thought it was bad habits from limping with my knee. By July, I was having trouble climbing stairs and feeling weak after walking distances. I still had know idea ALS was lurking, and we had a very busy summer, with long bike rides on the weekends, and hikes in the mountains. My husband and I bought new bikes in March and were having a great time cycling trails in OR, WA and Vancouver, BC. Here I thought the weakness might be from some of the supplement I was taking, and I was suspending one by one for two weeks at a time to see if it would make a distance.
August was a wake up call for me. We finished a 25 mile ride down in Southern Oregon, and when I was getting off my bike, I couldn't support myself or balance myself and met the pavement hard- cracked a rib, bruised a shoulder and knee, some good scrapes and a bruised ego. I decided at that point to go see my doctor. She referred me to a neurologist, but didn't get in to see him until early September. In the last couple weeks of August, we traveled to Boston to a national rowing event that my husband rowed in, went to the Minnesota Fair with the grandchildren (including walking around 10,000 + steps which was exhausting). I nearly fell twice at Logan airport, and my speech was slurring such that people thought I had been drinking. By the time I went to the neurologist, I had been googling my symptoms and had a sense that it was either a brain tumor or ALS.
After six weeks of testing, and a second neurologist (ALS expert), I received the diagnosis in October. Talk about life slapping you on the side of the head. Being an engineer, I spent a couple days in tears feeling sorry for myself and getting my paperwork in for Social Security and Medicare benefits. Suspending the interviews with companies that had been recruiting me (I was laid off at the end of July) and trying to figure out what to do next. I made a conscious choice, that while this disease would ravage my body, I would not let it ravage my spirit. I will live through this the best I can, I will try to find something to be joyful of every day.
Since then, we have sold our three level town house, and bought a new house that we are remodeling. I am getting progressively weaker, my speech is just about gone. I'm not afraid of the dying process, (I've had plenty of asthma attacks where I pass out.), I am saddened that I have limited time with my husband, kids and grand kids, but I am determined to make the best of this time. I worry about the need for care givers and how we pay for that as my husband is still working. I am learning to say yes to offers of help from others, and I am learning to let little things go.
As we look forward to 2017, I wonder if I will make it to Christmas next year, as my progression seems to be pretty fast. Over a year ago, we booked a 3 week Viking cruise in March to Italy, Greece and Israel to celebrate our 35th anniversary and I don't know if I will be able to go. I have a clinic day in January and will see what the doctors suggest. I am hopeful we can do this, but would not want to get sick in a foreign country. In July my son and his fiance from Singapore will be coming here to Oregon for a wedding ceremony. They had selected a resort in Laos to do the wedding but decided to have a smaller ceremony here in the US and a second one in Laos for their Asian friends. (They both live and work in Bangkok). I am hopeful I will be able to see him married.
I feel blessed to have had a such a enriching 2016 despite ALS and I look forward to 2017 with hope.
Merry Christmas to my fellow PALS. May you find strength and joy this season.
FrJn
Active member
- Joined
- Mar 12, 2015
- Messages
- 71
- Reason
- PALS
- Diagnosis
- 04/2016
- Country
- US
- State
- Somewhere
- City
- Small Town
Re: PALS roll call Wednesdays ( or whenever)
Merry Christmas, all! I'm not at all sure whether I'm several weeks late, or a few days early, but wanted to pop in just to say hello. The December ramp-up to Christmas was tying for sure! In early December a friend and fellow priest died. Our Bishop was not available, so this humble priest celebrated his funeral Eucharist for the family. It always pains me to officiate at the burial office of one who truly was a temporal contemporary. There are few things like getting smacked in the face with our own mortality and the sure and certain knowledge that, one day, it will be my burial office which is being celebrated. This was Fr. Joe's first Christmas in the nearer presence of his God! I do hope that he had a place at the altar yesterday.
Later in December, there was a hugely joyous liturgy on a Sunday, when we did the liturgy for Thanksgiving for Adoption of a Child and then Baptism for a 2 1/2 year old, precocious and precious young lady. What a beautiful counterpoint that provided! This young lady has been through so much in her few years of life, and it truly is gratifying to see her thriving in her new home. They truly are such a beautiful family and an encouragement to all.
Saturday evenings services truly were among the most gorgeous that I can recall. Our choir was just outstanding and the inclusion of the "Alleluia's" following the weeks of Advent were a most wonderful addition. "Midnight Mass" in particular was simply among the most meaningful I can recall having celebrated. The quiet hush in the church with the lilting melody of "Silent Night" sung in darkness with only candle for light is an absolute must for me. Christmas simply does not come without the grandeur and yet simplicity of that midnight liturgy.
My assistant gave me her traditional Christmas gift of celebrating Christmas Day, so that I can be home with family and reveling with the young ones. All three of our sons, as well as our grandson, were with us for brunch, gifting, and family time. Even our youngest son and his wife flew in from Alaska to celebrate with us. They'll be here until after the New Year and I know that more raucous laughter will permeate our home until they finally make that trip back up north. I am truly excited about going to visit them next summer! I'd gladly make the trip during the winter, but my far, far better half doesn't do at all well during winters here, let alone in Alaska!
On the ALS front, things are still, thankfully, progressing at the rate of a pre-global warming glacier. Yep, I'm certainly even more clumsy and I did violate Max's cardinal rule by performing a semi-controlled yet ungainly "sit down" in front of the church on Saturday afternoon. Thankfully, I always keep a clean set of clerics in the church, so that I was able to change before those Christmas Eve services.
I do pray that all had a peaceful Christmas, surrounded by loved ones, and remembering the reason for the celebration.
Next Sunday I begin an abbreviated schedule here and will be retiring at the end of 2017. Yet one more bittersweet milestone in an otherwise common life.
Peace y'all! Oh, and just because I can ... HO, HO, HO (with a gazillion "Alleluia's" thrown in for good measure)!
John
Merry Christmas, all! I'm not at all sure whether I'm several weeks late, or a few days early, but wanted to pop in just to say hello. The December ramp-up to Christmas was tying for sure! In early December a friend and fellow priest died. Our Bishop was not available, so this humble priest celebrated his funeral Eucharist for the family. It always pains me to officiate at the burial office of one who truly was a temporal contemporary. There are few things like getting smacked in the face with our own mortality and the sure and certain knowledge that, one day, it will be my burial office which is being celebrated. This was Fr. Joe's first Christmas in the nearer presence of his God! I do hope that he had a place at the altar yesterday.
Later in December, there was a hugely joyous liturgy on a Sunday, when we did the liturgy for Thanksgiving for Adoption of a Child and then Baptism for a 2 1/2 year old, precocious and precious young lady. What a beautiful counterpoint that provided! This young lady has been through so much in her few years of life, and it truly is gratifying to see her thriving in her new home. They truly are such a beautiful family and an encouragement to all.
Saturday evenings services truly were among the most gorgeous that I can recall. Our choir was just outstanding and the inclusion of the "Alleluia's" following the weeks of Advent were a most wonderful addition. "Midnight Mass" in particular was simply among the most meaningful I can recall having celebrated. The quiet hush in the church with the lilting melody of "Silent Night" sung in darkness with only candle for light is an absolute must for me. Christmas simply does not come without the grandeur and yet simplicity of that midnight liturgy.
My assistant gave me her traditional Christmas gift of celebrating Christmas Day, so that I can be home with family and reveling with the young ones. All three of our sons, as well as our grandson, were with us for brunch, gifting, and family time. Even our youngest son and his wife flew in from Alaska to celebrate with us. They'll be here until after the New Year and I know that more raucous laughter will permeate our home until they finally make that trip back up north. I am truly excited about going to visit them next summer! I'd gladly make the trip during the winter, but my far, far better half doesn't do at all well during winters here, let alone in Alaska!
On the ALS front, things are still, thankfully, progressing at the rate of a pre-global warming glacier. Yep, I'm certainly even more clumsy and I did violate Max's cardinal rule by performing a semi-controlled yet ungainly "sit down" in front of the church on Saturday afternoon. Thankfully, I always keep a clean set of clerics in the church, so that I was able to change before those Christmas Eve services.
I do pray that all had a peaceful Christmas, surrounded by loved ones, and remembering the reason for the celebration.
Next Sunday I begin an abbreviated schedule here and will be retiring at the end of 2017. Yet one more bittersweet milestone in an otherwise common life.
Peace y'all! Oh, and just because I can ... HO, HO, HO (with a gazillion "Alleluia's" thrown in for good measure)!
John
canmark
Distinguished member
- Joined
- Jul 19, 2013
- Messages
- 111
- Reason
- PALS
- Diagnosis
- 07/2013
- Country
- CA
- State
- Ontario
- City
- Toronto
Merry Christmas and Happy New Year everyone!
I haven’t posted in a while so I’ll give a quick recap to people who don’t know/remember me. I was diagnosed in July 2013 and have gone through the many stages of progression: walking with a cane, walker/rollator, manual wheelchair, power wheelchair. My physical weakness is now to the point where I am in bed most of the time. Occasionally I get out, but must be transferred by a ceiling lift and someone has to drive the power wheelchair for me.
I have a tablet with Tobii eye gaze, but usually I have someone help me with the computer and type out all my posts (such as this one).
I took Rilutek for a couple of years but discontinued as it didn’t seem to be having any effect, positive or negative. I currently take anti-depressant and anti-anxiety medications plus a stool softener, but otherwise no special medication or supplements specifically for ALS.
Although my breathing has weakened considerably, I am still able to speak and eat/drink. I had told my doctors a few years ago, that I would not use any mechanical breathing devices, such as a BiPaP (which was prescribed for me over a year and a half ago) or a ventilator. Fortunately, Canada updated its law on physician-assisted dying so that when the time comes, I should be able to exercise that option.
I wish all PALS comfort and support in dealing with ALS.
canmark
I haven’t posted in a while so I’ll give a quick recap to people who don’t know/remember me. I was diagnosed in July 2013 and have gone through the many stages of progression: walking with a cane, walker/rollator, manual wheelchair, power wheelchair. My physical weakness is now to the point where I am in bed most of the time. Occasionally I get out, but must be transferred by a ceiling lift and someone has to drive the power wheelchair for me.
I have a tablet with Tobii eye gaze, but usually I have someone help me with the computer and type out all my posts (such as this one).
I took Rilutek for a couple of years but discontinued as it didn’t seem to be having any effect, positive or negative. I currently take anti-depressant and anti-anxiety medications plus a stool softener, but otherwise no special medication or supplements specifically for ALS.
Although my breathing has weakened considerably, I am still able to speak and eat/drink. I had told my doctors a few years ago, that I would not use any mechanical breathing devices, such as a BiPaP (which was prescribed for me over a year and a half ago) or a ventilator. Fortunately, Canada updated its law on physician-assisted dying so that when the time comes, I should be able to exercise that option.
I wish all PALS comfort and support in dealing with ALS.
canmark
Firefighter58
Senior member
- Joined
- Jun 21, 2016
- Messages
- 728
- Reason
- PALS
- Diagnosis
- 05/2014
- Country
- CA
- State
- ON
- City
- Oakville
canmark, Good to hear from you, you and I are not far apart. This a terrible way to meet someone though. I was diagnosed in 2014 but have actually had this stinking disease since 2010. I know it is hard for you to reply so I will not ask you to do that, Merry Christmas canmark and keep up the fight. As Red Green would say we're all in this together.
Al
Al
- Status
