SJFBC
Member
- Joined
- Jan 17, 2016
- Messages
- 10
- Reason
- CALS
- Diagnosis
- 05/2012
- Country
- CA
- State
- British Columbia
- City
- Parksville
Hi Everyone,
Although I have visited this forum from time to time, this is actually my first posting but I hope the information that we want to share will also be of help to other PALS and CALS out there:
But first I thought I would start off by giving you some background on our story so you know a bit more about us and the journey we have been on so far……
My beautiful husband received a diagnosis of ALS in 2012 (age 55), just one year after he and I got together!! We were both working as full-time ski instructors at the time and considered ourselves pretty fit and healthy, extremely happy and we were most definitely “living the dream!”
Skiing has always been my husband’s number one passion. From a very young adult age, he was involved in the ski industry in some way…….from being a ski cat operator, to running ski patrol and managing a small ski hill in Saskatchawan. However, he knew that working in the ski industry was never going to be a high-paying career so, prior to becoming a ski instructor in 2004, my husband spent 18 years as an RCMP police officer. He also served overseas on two tours of duty (back-to-back) with the UN in Haiti in 1995. The nature of his work meant that he had to keep himself in good physical shape so regular exercise and working-out in the gym was very much part of his daily life. He decided to retire from the RCMP after his wife (also an RCMP police officer) was tragically killed in the line of duty in 2002 and blew his world apart!! Needless to say, it was a very difficult time in his life but it was his love of skiing that eventually took him to his “happy place” and it was there that he also found a new career in ski instructing, and is also where we both met!
My husband’s symptoms actually began 3 years prior to his diagnosis and started with fasciculations in his arms. He went to see his GP and she asked him if he ate lots of bananas! When my husband told her that he couldn’t remember the last time he ate a banana she told him that it was nothing to worry about, that it was very likely Benign Fasciculation Syndrome and was just part of the “ageing process”. The year after that (in 2010), he started to notice that his muscles in his biceps were shrinking and the skin around his armpits was sagging. His GP asked him if he had ever taken steroids and when my husband told her that he had never touched steroids or anything like that in his life, she again said that she was sure it was nothing to worry about and told him that he had to come to terms with the fact that he was getting older and his body was changing. However, she did say that she would arrange an appointment for him to see a neurologist to get things checked out. One year later (2011) my husband had still not received an appointment to see a neurologist!! It was when we were moving in to our first home together in 2011 that my husband noticed that he wasn’t able to lift and move furniture like he used to. When he told me that his GP had told him “it was all just part of the ageing process” we just laughed it off and got some of our friends to help us with the move. However, my husband did go and see his GP again and she said that she would chase-up the appointment for him to see a neurologist. In 2012, I was skiing with two of my doctor friends from the UK and I told them about my husband’s symptoms. They very kindly offered to have a chat with my husband and check his symptoms out, which they did…..and told him that he needed to go back to his GP “immediately” and insist on seeing a neurologist ASAP. So, straight away we called and made an appointment for the very next day. Thankfully, my husband’s regular GP was away at the time and so my husband saw a different GP at the clinic who finally got the ball rolling and within a few weeks my husband saw a neurologist. It was then that our world started to fall apart as we were being introduced to the possibility that it was ALS. Nine months later, following countless tests blood tests, two nerve conduction studies, lumbar puncture, muscle and nerve biopsy etc., etc. the ALS diagnosis was confirmed. Thankfully, my husband’s progression has been relatively slow and so we have been very grateful for that!!!
By 2012 my husband’s right arm (he is right-arm dominant) and hand became quite weak and he was having trouble doing up his buttons, tying his shoelaces, opening doors etc., etc. Over the next twelve months, his left arm and hand started to also get weaker and by the fall of 2013 he had pretty much lost the use of both arms completely. However, at that time, his legs were still very muscular and strong so we were able to get around and still do lots of good things together which also included getting married….on skis! Even without arms, my husband was still one of the best skiers on the mountain!! Unfortunately, he wasn’t physically able to teach skiing anymore and so I also gave up ski instructing that same winter so that I could be with my husband and we could enjoy every bit of our life together.
In the fall of 2014, we decided to move away from the mountains and set up home on Vancouver Island where the climate is a lot milder and the conditions are more conducive to our situation.
My husband’s legs remained pretty strong until the summer of 2015 when his right leg just randomly gave way on a couple occasions without any warning! It was then that I decided that we should start organizing whatever transfer and mobility equipment we were going to need. That’s when I started to check out the ALS Forums to try and glean whatever information I could from other PALS and CALS experiences. However, as I knew that my husband was very likely going to end up quadriplegic, I also researched a lot of quadriplegia websites and forums. It was through all of that research that I started to hit upon equipment that not even the ALS Clinic or my Husband’s Occupational Therapist had heard about. Initially they thought that we were just trying to get funding for what they termed as “high-end” equipment……..and made us feel like we were asking for a Ferrari!!!!! However, we stood our ground and justified to Veterans Affairs why my husband needed the equipment we were requesting. It was when we received the demo equipment to try out that my husband’s OT became very impressed and started to look at the equipment through different eyes and has since thanked us for making her and the community aware that this sort of equipment even existed!!
Thank goodness we did start the ball rolling on getting all of the equipment organized when we did as my husband’s legs decided to call it a day on December 30, 2015!! The transfer and mobility equipment that we now have has made a HUGE difference to my husband’s quality of life and has also enabled me to be able to continue to take care of him at home a lot more effectively and comfortably…..for both of us!
Despite the obvious devastation that this dreadful disease has brought into our world, we are very much in love and determined to make the most of and enjoy our life together as best we can. We do consider ourselves a good team and there hasn’t been one hurdle that we haven’t overcome as yet. Like all of the other PALS and CALS, we have had some extremely difficult, frustrating and very sad moments to deal with along the way and we do have our “down” days but we are both very good at picking each other up and getting back on the “positive” path and consider ourselves extremely lucky for every day that we still have each other.
Anyway, that’s pretty much our story and where we are at at this point in time so now we would like to share with you all of the things that we have discovered along the way that have made a big difference to us in one way or another and we hope it will also be of help to other PALS and CALS:
Fasciculations and cramps: Magnesium Bisglycinate
https://www.vitasave.ca/trophic-chelazome-magnesium-bisglycinate.html
My husband’s entire body was “alive” with fasciculations as if he was wired to the mains and he also suffered bad cramping, especially at night when lying in bed. His Massage Therapist recommended that he try Magnesium Bisglycinate so my husband started taking this supplement last spring and after just two weeks of taking 5 caplets per day (2 of which he takes right before going to bed) my husband’s fasciculations virtually stopped altogether - he just has the occasional twitching from time to time, particularly when he gets really tired - and his nightly leg cramps have been non-existent ever since.
Toileting: Remote Control Bidet Seat
Novita Bidet BH-90 / 93 Bidet Seat
This was one of the first pieces of equipment that we purchased for my husband when both of his arms had become weak. We’ve had this bidet seat now for almost two years and it is awesome! My husband loves the dignity and comfort this bidet seat gives him and for me all I have to do is push a button and the bidet seat does the rest (it is pre-programmed)……with a warm seat and a warm water jet, wooohooo!! I do still do a quick “wet-wipe check” for my husband when the program finishes but I would say that at least 70 percent of the time it’s not necessary and the rest of the time there is generally just a small amount of residue.
Transfer and Mobility Device: Rifton TRAM
This equipment has been an absolute godsend!!!! I honestly do not know what we would have done if we did not have this device. Not only do I use it to transfer my husband in the sitting position to and from the bed to the toilet and to his wheelchair but I also use it to help my husband stand and walk which is so important, not only for exercise and circulation but also for his morale! I have also found it very useful for standing my husband to dry him after showering and also dressing him. Plus it has a built in scale so I can easily keep a check on my husband’s weight.
Sleeping - Pro Bed’s “Freedom Bed”
Products ProBed: immobilized individuals, Freedom Bed, computer-controlled, mechanical repositioning, automatic operation, avoiding bedsores, improving respiration
This bed has also been a godsend for my husband!! Ever since my husband lost the use of both of his arms, he has been unable to turn himself in bed and he has always been a side-sleeper. So, every night for the past 12 months or so, I would set my alarm to wake every 1 to 2 hours (1 hour in the hotter/summer months) so that I could turn him to relieve the pressure off his back, neck and shoulders and also stop him lying in a pool of sweat. Moving him manually was very uncomfortable and painful for my husband and physically demanding for me. Needless to say, neither of us got much sleep during the night. It became even more difficult and uncomfortable for me to move my husband when he also lost the use of his legs and his core strength so for me trying to move a 180lb man every hour was not easy. Pressure sores and pneumonia have always scared the heck out of me as both of my parents suffered badly with pressure sores from being bed-bound with cancer and my Dad’s sores ended up getting infected (while in hospital) which then led to him getting pneumonia and it was the pneumonia killed him (age 58). So, I was determined to make sure that I do whatever I can to protect my husband as best I can from getting pressure sores and/or pneumonia. My husband did demo Roho air mattresses but none of these worked out as they did not provide the stability and safety he needs when transferring him to and from the bed plus the constant noise from the air pumps kept him awake at night (he also has PTSD and is very noise sensitive). The Freedom Bed however, is extremely quiet and very stable and safe for transferring. There are so many amazing things that the Freedom bed does but one of the key features from an important health point of view is that it turns my husband’s body mechanically at the push of a button or on a pre-set program, which is what we have set up for my husband at night, and we can easily adjust the degree angle and the duration of the turn to whatever makes my husband comfortable which also helps to prevent the build up of any pressure points. The cushioning of the height-adjustable airbags at the head and feet have also greatly reduced the pain my husband was getting in his neck and shoulders and has also reduced the swelling in his feet. My husband’s Freedom bed was delivered on January 15, 2016 and it has already made a MASSIVE difference to his quality of life and his overall state of mind and, at last, we are both getting the good night’s sleep that we were craving!
Again I discovered this bed when googleing “beds for quadriplegics” but I also noticed a couple of 2014 threads on the ALS Forum where the Freedom Bed was mentioned. Those threads were mentioning some issues with positioning of arms when the bed is rotating so I took that information into account when we were demo’ing the bed and I designed and “made” (using bits of foam and duct tape) an arm bolster that I hoped would be suitable for my husband……and it was! I then showed our “prototype” arm bolster to Pro Bed who took the design to their bolster manufacturer and they made a pair of arm bolsters for my husband, which turned out awesome and work perfectly!
Widening door ways: Off-set door hinges: Off-set door hinges
Amazon.com: HealthSmart Expandable Door Hinge, Satin Nickel: Health & Personal Care@@AMEPARAM@@http://ecx.images-amazon.com/images/I/41Aic6%2BdmZL.@@AMEPARAM@@41Aic6%2BdmZL
HealthSmart Expandable Door Hinges, Satin Nickel: Amazon.ca: Health & Personal Care@@AMEPARAM@@http://ecx.images-amazon.com/images/I/41Aic6%2BdmZL.@@AMEPARAM@@41Aic6%2BdmZL
The hinges only get a 1 star rating on Amazon.ca but I would totally ignore that review as they have worked perfectly well for us and they get a 4+ star rating on Amazon.com….where lots more people have reviewed them. Plus it all depends on who you get to hang them! Our carpenter had to make some adjustments to make them fit but he did an excellent job - you wouldn’t even know that they weren’t the original hardware on the doors…….except now our doorways are at least a couple of inches wider, which is perfect!!!!
So that’s about it with all that. It has taken me a couple of weeks to put all this information together to post on the ALS Forum but we really do hope that it will be of help to others. The links I have included for each of the items will hopefully explain things in more detail but if anyone has any specific questions, please feel free to ask.
Sharon
Although I have visited this forum from time to time, this is actually my first posting but I hope the information that we want to share will also be of help to other PALS and CALS out there:
But first I thought I would start off by giving you some background on our story so you know a bit more about us and the journey we have been on so far……
My beautiful husband received a diagnosis of ALS in 2012 (age 55), just one year after he and I got together!! We were both working as full-time ski instructors at the time and considered ourselves pretty fit and healthy, extremely happy and we were most definitely “living the dream!”
Skiing has always been my husband’s number one passion. From a very young adult age, he was involved in the ski industry in some way…….from being a ski cat operator, to running ski patrol and managing a small ski hill in Saskatchawan. However, he knew that working in the ski industry was never going to be a high-paying career so, prior to becoming a ski instructor in 2004, my husband spent 18 years as an RCMP police officer. He also served overseas on two tours of duty (back-to-back) with the UN in Haiti in 1995. The nature of his work meant that he had to keep himself in good physical shape so regular exercise and working-out in the gym was very much part of his daily life. He decided to retire from the RCMP after his wife (also an RCMP police officer) was tragically killed in the line of duty in 2002 and blew his world apart!! Needless to say, it was a very difficult time in his life but it was his love of skiing that eventually took him to his “happy place” and it was there that he also found a new career in ski instructing, and is also where we both met!
My husband’s symptoms actually began 3 years prior to his diagnosis and started with fasciculations in his arms. He went to see his GP and she asked him if he ate lots of bananas! When my husband told her that he couldn’t remember the last time he ate a banana she told him that it was nothing to worry about, that it was very likely Benign Fasciculation Syndrome and was just part of the “ageing process”. The year after that (in 2010), he started to notice that his muscles in his biceps were shrinking and the skin around his armpits was sagging. His GP asked him if he had ever taken steroids and when my husband told her that he had never touched steroids or anything like that in his life, she again said that she was sure it was nothing to worry about and told him that he had to come to terms with the fact that he was getting older and his body was changing. However, she did say that she would arrange an appointment for him to see a neurologist to get things checked out. One year later (2011) my husband had still not received an appointment to see a neurologist!! It was when we were moving in to our first home together in 2011 that my husband noticed that he wasn’t able to lift and move furniture like he used to. When he told me that his GP had told him “it was all just part of the ageing process” we just laughed it off and got some of our friends to help us with the move. However, my husband did go and see his GP again and she said that she would chase-up the appointment for him to see a neurologist. In 2012, I was skiing with two of my doctor friends from the UK and I told them about my husband’s symptoms. They very kindly offered to have a chat with my husband and check his symptoms out, which they did…..and told him that he needed to go back to his GP “immediately” and insist on seeing a neurologist ASAP. So, straight away we called and made an appointment for the very next day. Thankfully, my husband’s regular GP was away at the time and so my husband saw a different GP at the clinic who finally got the ball rolling and within a few weeks my husband saw a neurologist. It was then that our world started to fall apart as we were being introduced to the possibility that it was ALS. Nine months later, following countless tests blood tests, two nerve conduction studies, lumbar puncture, muscle and nerve biopsy etc., etc. the ALS diagnosis was confirmed. Thankfully, my husband’s progression has been relatively slow and so we have been very grateful for that!!!
By 2012 my husband’s right arm (he is right-arm dominant) and hand became quite weak and he was having trouble doing up his buttons, tying his shoelaces, opening doors etc., etc. Over the next twelve months, his left arm and hand started to also get weaker and by the fall of 2013 he had pretty much lost the use of both arms completely. However, at that time, his legs were still very muscular and strong so we were able to get around and still do lots of good things together which also included getting married….on skis! Even without arms, my husband was still one of the best skiers on the mountain!! Unfortunately, he wasn’t physically able to teach skiing anymore and so I also gave up ski instructing that same winter so that I could be with my husband and we could enjoy every bit of our life together.
In the fall of 2014, we decided to move away from the mountains and set up home on Vancouver Island where the climate is a lot milder and the conditions are more conducive to our situation.
My husband’s legs remained pretty strong until the summer of 2015 when his right leg just randomly gave way on a couple occasions without any warning! It was then that I decided that we should start organizing whatever transfer and mobility equipment we were going to need. That’s when I started to check out the ALS Forums to try and glean whatever information I could from other PALS and CALS experiences. However, as I knew that my husband was very likely going to end up quadriplegic, I also researched a lot of quadriplegia websites and forums. It was through all of that research that I started to hit upon equipment that not even the ALS Clinic or my Husband’s Occupational Therapist had heard about. Initially they thought that we were just trying to get funding for what they termed as “high-end” equipment……..and made us feel like we were asking for a Ferrari!!!!! However, we stood our ground and justified to Veterans Affairs why my husband needed the equipment we were requesting. It was when we received the demo equipment to try out that my husband’s OT became very impressed and started to look at the equipment through different eyes and has since thanked us for making her and the community aware that this sort of equipment even existed!!
Thank goodness we did start the ball rolling on getting all of the equipment organized when we did as my husband’s legs decided to call it a day on December 30, 2015!! The transfer and mobility equipment that we now have has made a HUGE difference to my husband’s quality of life and has also enabled me to be able to continue to take care of him at home a lot more effectively and comfortably…..for both of us!
Despite the obvious devastation that this dreadful disease has brought into our world, we are very much in love and determined to make the most of and enjoy our life together as best we can. We do consider ourselves a good team and there hasn’t been one hurdle that we haven’t overcome as yet. Like all of the other PALS and CALS, we have had some extremely difficult, frustrating and very sad moments to deal with along the way and we do have our “down” days but we are both very good at picking each other up and getting back on the “positive” path and consider ourselves extremely lucky for every day that we still have each other.
Anyway, that’s pretty much our story and where we are at at this point in time so now we would like to share with you all of the things that we have discovered along the way that have made a big difference to us in one way or another and we hope it will also be of help to other PALS and CALS:
Fasciculations and cramps: Magnesium Bisglycinate
https://www.vitasave.ca/trophic-chelazome-magnesium-bisglycinate.html
My husband’s entire body was “alive” with fasciculations as if he was wired to the mains and he also suffered bad cramping, especially at night when lying in bed. His Massage Therapist recommended that he try Magnesium Bisglycinate so my husband started taking this supplement last spring and after just two weeks of taking 5 caplets per day (2 of which he takes right before going to bed) my husband’s fasciculations virtually stopped altogether - he just has the occasional twitching from time to time, particularly when he gets really tired - and his nightly leg cramps have been non-existent ever since.
Toileting: Remote Control Bidet Seat
Novita Bidet BH-90 / 93 Bidet Seat
This was one of the first pieces of equipment that we purchased for my husband when both of his arms had become weak. We’ve had this bidet seat now for almost two years and it is awesome! My husband loves the dignity and comfort this bidet seat gives him and for me all I have to do is push a button and the bidet seat does the rest (it is pre-programmed)……with a warm seat and a warm water jet, wooohooo!! I do still do a quick “wet-wipe check” for my husband when the program finishes but I would say that at least 70 percent of the time it’s not necessary and the rest of the time there is generally just a small amount of residue.
Transfer and Mobility Device: Rifton TRAM
This equipment has been an absolute godsend!!!! I honestly do not know what we would have done if we did not have this device. Not only do I use it to transfer my husband in the sitting position to and from the bed to the toilet and to his wheelchair but I also use it to help my husband stand and walk which is so important, not only for exercise and circulation but also for his morale! I have also found it very useful for standing my husband to dry him after showering and also dressing him. Plus it has a built in scale so I can easily keep a check on my husband’s weight.
Sleeping - Pro Bed’s “Freedom Bed”
Products ProBed: immobilized individuals, Freedom Bed, computer-controlled, mechanical repositioning, automatic operation, avoiding bedsores, improving respiration
This bed has also been a godsend for my husband!! Ever since my husband lost the use of both of his arms, he has been unable to turn himself in bed and he has always been a side-sleeper. So, every night for the past 12 months or so, I would set my alarm to wake every 1 to 2 hours (1 hour in the hotter/summer months) so that I could turn him to relieve the pressure off his back, neck and shoulders and also stop him lying in a pool of sweat. Moving him manually was very uncomfortable and painful for my husband and physically demanding for me. Needless to say, neither of us got much sleep during the night. It became even more difficult and uncomfortable for me to move my husband when he also lost the use of his legs and his core strength so for me trying to move a 180lb man every hour was not easy. Pressure sores and pneumonia have always scared the heck out of me as both of my parents suffered badly with pressure sores from being bed-bound with cancer and my Dad’s sores ended up getting infected (while in hospital) which then led to him getting pneumonia and it was the pneumonia killed him (age 58). So, I was determined to make sure that I do whatever I can to protect my husband as best I can from getting pressure sores and/or pneumonia. My husband did demo Roho air mattresses but none of these worked out as they did not provide the stability and safety he needs when transferring him to and from the bed plus the constant noise from the air pumps kept him awake at night (he also has PTSD and is very noise sensitive). The Freedom Bed however, is extremely quiet and very stable and safe for transferring. There are so many amazing things that the Freedom bed does but one of the key features from an important health point of view is that it turns my husband’s body mechanically at the push of a button or on a pre-set program, which is what we have set up for my husband at night, and we can easily adjust the degree angle and the duration of the turn to whatever makes my husband comfortable which also helps to prevent the build up of any pressure points. The cushioning of the height-adjustable airbags at the head and feet have also greatly reduced the pain my husband was getting in his neck and shoulders and has also reduced the swelling in his feet. My husband’s Freedom bed was delivered on January 15, 2016 and it has already made a MASSIVE difference to his quality of life and his overall state of mind and, at last, we are both getting the good night’s sleep that we were craving!
Again I discovered this bed when googleing “beds for quadriplegics” but I also noticed a couple of 2014 threads on the ALS Forum where the Freedom Bed was mentioned. Those threads were mentioning some issues with positioning of arms when the bed is rotating so I took that information into account when we were demo’ing the bed and I designed and “made” (using bits of foam and duct tape) an arm bolster that I hoped would be suitable for my husband……and it was! I then showed our “prototype” arm bolster to Pro Bed who took the design to their bolster manufacturer and they made a pair of arm bolsters for my husband, which turned out awesome and work perfectly!
Widening door ways: Off-set door hinges: Off-set door hinges
Amazon.com: HealthSmart Expandable Door Hinge, Satin Nickel: Health & Personal Care@@AMEPARAM@@http://ecx.images-amazon.com/images/I/41Aic6%2BdmZL.@@AMEPARAM@@41Aic6%2BdmZL
HealthSmart Expandable Door Hinges, Satin Nickel: Amazon.ca: Health & Personal Care@@AMEPARAM@@http://ecx.images-amazon.com/images/I/41Aic6%2BdmZL.@@AMEPARAM@@41Aic6%2BdmZL
The hinges only get a 1 star rating on Amazon.ca but I would totally ignore that review as they have worked perfectly well for us and they get a 4+ star rating on Amazon.com….where lots more people have reviewed them. Plus it all depends on who you get to hang them! Our carpenter had to make some adjustments to make them fit but he did an excellent job - you wouldn’t even know that they weren’t the original hardware on the doors…….except now our doorways are at least a couple of inches wider, which is perfect!!!!
So that’s about it with all that. It has taken me a couple of weeks to put all this information together to post on the ALS Forum but we really do hope that it will be of help to others. The links I have included for each of the items will hopefully explain things in more detail but if anyone has any specific questions, please feel free to ask.
Sharon
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