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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
 
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Great first post Sharon, being proactive means you have things on hand when you need them, sorry you have joined our wonderful family here but you will feel well supported and loved here.
Love Gem
 
Sorry have to welcome you here, but you are very welcome here!

It is great to add more skiers to the mix! My wife and I live in a ski area. Though I am no longer able to ski on regular skis, I am in the adaptive ski program and get to go out on a bi-ski. It is a wonderful experience and I highly recommend it!

Thanks for your helpful post.

Steve
 
Welcome Sharon! Thanks for taking so much time to share your experience and knowledge on the equipment. There is a lot of useful information within your heartfelt post. I admire your attitude and positivity. I can certainly see that you and your PALS are taking on ALS and are very prepared. You like everyone else on here can share your story and it will hit home with someone. Your post came at a time that I am pretty down and not as positive as I normally am or should be. That's why we are all here. To share, support and learn.
 
Welcome Sharon,

There are some great tips in this post, thanks for taking the time to put it all together.

For some reason there was no link for the Rifton TRAM, but I did google it.
It would seem that your husband must have good core and neck strength. I do like the look of this transfer except that for any PALS that progresses fast it would not be suitable for long. But others here do say that's not important, and that you should go with what works at the time and then change and get something suitable when needs change.

How long have you been using it for? It looks quite compact, but also it looks like the legs spread?

I've seen some amazing special needs hoists, ones for getting a PALS in and out of the car, some even built in as part of the car. I've known people who were very happy purchasing them even if they could only use them for some months.

Many of our members find magnesium really helps, and it seems that if there was a deficiency then taking it will make a huge difference. We tried it in various forms and it had no effect.

That's the great benefit of the forum - if something works for you, others can decide to give it a try. If it doesn't work for all PALS, well that's exactly what makes this disease so difficult for the researchers to pin a cause on, let alone a cure. But collectively here we can offer a wide range of strategies and that's what becomes so important.

I'm glad you joined, though I'm sorry you have to be here. I've never even seen true snow!
 
Thanks so much for your very informative post. My husband's progression sounds very similar to your husbands. I am going to check out the bed you describe because my husband is miserable in the bed and air mattress he was given from the Medicare supply company. He also can not turn in bed.

You seem to really have it all together and I admire you.

From another Sharon
 
Wow, Sharon, that's a lot of information you've pulled together and shared. Like "Affected" said, not everything works for every PALS, but it's awareness of all the options available that enables us to provide for the specific needs for our individual loved ones. Thanks for laying out more of those options for us. That was a real labor of love.

And welcome to the forum. Incredibly sorry you're paying the membership "dues" but glad you're here.

Cindy
 
Some great information here!! Thank you so very much for sharing!
Tracy
 
Sharon, thanks so much for sharing this information. We are in the early stages of this disease and I appreciate all of the work you have done to post this. We will definitely file this info away for the future.

V
 
Hi everyone,

Thank you all so much for your thanks and kind words of welcome, it really is very much appreciated.
I am so pleased that you are finding the information useful…..if only to know about it and pass on to others if we think it can help. There are so many variants of this cruel disease and not everything will work for everyone but hopefully, by keeping people informed of what equipment has particularly helped us then it can only be a good thing. None of us deserve what we are going through but anyway that we can make the journey "easier" is a huge help.

Sharon
 
Sharon,
Those hinges are a great idea. I really can use them.
Thanks!
Marty
 
Hi Tillie,

We got my husband's Rifton Tram the second week of December 2015…..and thank goodness we did as I honestly do not know how we would have managed when my husband's legs finally quit working on December 30th!! Thankfully, I had also had enough time to get used to using it so I knew what to do when that happened and, like I said, it has been a godsend for us.

My husband's neck is still relatively ok (but weakening) but he doesn't have any core strength at all. However, the support arms on the Rifton TRAM that clamp around his torso are super effective and he says are extremely comfortable. He also has two different sets of harnesses that are very easy to use. One set for transferring him in the seated position and the other set is for walk mode.

Yes, it is very compact and turns on a dime! The legs do spread which is extremely useful when transferring my husband to and from his lift chair and his wheelchair. It also elevates him which also makes transferring to different height furniture etc very easy. The caregiver controls are easy to operate and the harnesses are colour coded which makes attaching them very simple to understand. This equipment won a gold award for medical design excellence in 2013 and we can totally understand why!

I did include some more links to the Rifton TRAM in my original posting but the Forum Moderator felt that some of the information was "superfluous material" and removed those links before actually posting it on the forum. I appreciate that they must check all the postings and make sure that they don't contain any unwanted or harmful information. However, I will try and attach them to this reply as those links explain in more detail how this equipment works far better than I can and one of the links is to a youtube video which shows a PALS using it in the walking harness.

<Commercial link deleted by mod>

https://www.youtube.com/watch?v=12ZV_BHDj54

Hope that helps.

Sorry that you have never seen real snow…….but never say never!!!!

Must dash now, my husband's physio is due in 15 minutes so I need to get my husband ready for her.

I'll be back.

Sharon
 
Add me to the mix of people who appreciate your list of items. The lift sounds like it might be a solution as M still has core strength. For us The Zinger wheelchair has been a boon. It is not for those without upper body capability or core strength. M has bulbar and lower extremity involvement. But it folds like a lawn chair weighs 40 pounds and fits in a car trunk. It is now available in US.
Thank you,
Anna
 
Yes, we agree, it is a wonderful experience!

When Mario, my husband was a ski instructor, he was also CADS (Canadian Association for Disabled Skiing) qualified and regularly volunteered to assist with teaching students in the adaptive ski program. He now has first-hand experience of the benefits from both sides of that program and has been out a few times on a bi-ski (firmly attached to a CADS member!!) and had a blast so he also highly recommends it…….even for people who have never even been skiing before, it is a lot of fun.

Mario still likes to keep up with the ski industry and particularly ski equipment technology. He regularly gets called on by his ski buddies for equipment advice which really thrills him and makes him feel good.

We are also avid viewers of the annual downhill ski championships and watch every race that gets aired on the TV (or Youtube)……go Lindsey Vonn!!!!

Don’t know if you and your wife are into watching skiing DVD’s but if you are we would highly recommend a movie titled “McKonkey”. It’s a movie about the late Shane McKonkey who most definitely lived his life on the edge. He was also known for his contributions to ski design, notably powder skis!!! Plus the scenery in the movie is absolutely spectacular!

Sharon
 
Thanks, Pittsburghgal, I am only too pleased to help.

We totally appreciate what you and your husband will be going through right now. I think that was one of the most miserable times for Mario when he couldn’t turn in bed. At first he was suffering in silence because he didn’t want to disturb me. However, it wasn’t long until I twigged on to how much discomfort and misery it was causing him and that was when I started to set my alarm to wake and turn him every one or two hours throughout the night. It was a tough time for both of us (as I have no doubt it will also be for you and your husband). Moving and lifting him was not easy and sleep depravation was also having a big impact on our quality of life all round. I was finding it harder and harder to also sit Mario up to transfer him out of the bed and I actually put my back out doing just that so that made things even more difficult for us both.

It was such a relief when we got the Freedom bed. As I mentioned in my previous thread, literally everything (turning, raising the head, and feet, elevating the bed for therapy treatments etc., etc.) is all done mechanically and has taken all the strain and pain away from both of us.

If you go on the Pro Bed website, click on the “Testimonials” link and you will see a lot more feedback from other users – it’s those testimonials that really hit home to me how much of a benefit this bed could also be for Mario. Pro Bed are very easy to deal with and very helpful. Peter was our contact and he honestly could not do enough for us.

My husband demo’d the Freedom bed for two weeks in September and by the third night of the trial, he found that he wasn’t experiencing any pain in his neck and shoulders when he was lying down and was pretty much sleeping right through the night because he was also being turned without any discomfort. I was lying by the side of his bed on a mattress on the floor but I still slept more than I had been, just knowing that Mario was more comfortable and the bed was doing all the work, so to speak! I hope it is something that will also help you and your husband.

Good luck and big hugs to you both!
 
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