Tips & Tricks for Living with ALS
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I have wanted to create a page on what I have learned throughout my diagnosis to share with others. There is so much that I want to share that I have been overwhelmed with where to start. In fact, I began a blog about it in October 2015! Instead of waiting for it to be perfect, I will share it with you as I go, so keep checking in for new tips. I would also love to post any tips I might have missed or questions people would like answered so feel free to reach out with your thoughts by emailing me at rolyskinner@gmail.com
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Disclaimer:
Although I am a Skinner, I am not a doctor. My ALS diagnosis began with limb onset, which is very different to bulbar onset, and everyone's progression varies, mine is slow progressing. Sometimes progression is quick, sometimes it plateaus, and we still don't know why, or how it might affect one person's diagnosis from another. Please take my advice as helpful hints. Some tips might work, others not so much. What is important is to do what is right for you. I am constantly researching and asking people for information. I encourage you to do the same.
*pALS = person living with ALS
*cALS = caregiver for someone living with ALS
Although I am a Skinner, I am not a doctor. My ALS diagnosis began with limb onset, which is very different to bulbar onset, and everyone's progression varies, mine is slow progressing. Sometimes progression is quick, sometimes it plateaus, and we still don't know why, or how it might affect one person's diagnosis from another. Please take my advice as helpful hints. Some tips might work, others not so much. What is important is to do what is right for you. I am constantly researching and asking people for information. I encourage you to do the same.
*pALS = person living with ALS
*cALS = caregiver for someone living with ALS
IN THE BEGINNING
The day of diagnosis my life changed immediately in all aspects. With ALS there is no time to wait. It was like a slap in the face to be given 2-3 years to live and without time to let that sink in, I was told that I needed to move right away (because someone once had to call 911 due to being stuck on their stairs), stop working, and do whatever it is that I wanted to do in my life - and do it now.
The day of diagnosis my life changed immediately in all aspects. With ALS there is no time to wait. It was like a slap in the face to be given 2-3 years to live and without time to let that sink in, I was told that I needed to move right away (because someone once had to call 911 due to being stuck on their stairs), stop working, and do whatever it is that I wanted to do in my life - and do it now.
- If you are going for any major medical test, bring support - As my husband & I both worked, we always went to doctor's appointments on our own. When I went for my EMG, I had no idea that I would be diagnosed on the spot, I mean usually with tests you need to wait a week (or two, or three) for the results right? Not with this one, I was given the diagnosis immediately following my EMG. I was fortunate that Travis had decided to meet me at the hospital for this appointment, as I had already had 2 MRI's. I can't imagine being alone when given this news.
- Meet with HR - Fortunately, through my workplace I had long-term disability benefits (LTD) and life insurance. I had a 3 month waiting period before I could go on LTD. I had to stop all work immediately before the waiting period began. I could not volunteer, work part time, or even participate in a National Conference I was scheduled to present at. Luckily, I had accrued 60 sick days which carried me through to LTD.
- Home situation - We had to sell our Condo and it was during our 5 year amortization, so of course we had to pay a penalty. We went to speak to the bank personally about our situation and they gave us a discount in the penalty when we provided a doctor's note (of course I didn't have mortgage insurance when we bought because it was our first home and we were both young and invincible at the time). Find a place to live with no stairs and a walkin/roll in shower.
- Invest is a good bed right away - Travis & I had been given free tickets to the Home & Garden show and impulsively bought a Tempur-pedic adjustable bed with massage feature. I was amazed with the deal I got from buying it from a show, and I even negotiated taxes thrown in! I didn't realize at the time how much time I actually spend in my bed, and the need for the automatic lift feature in both the head and feet. Some professionals may disagree with me, however, as the bed itself does not raise up and down as a hospital bed does.
- Disability Tax Credit (DTC) - One of the first things I did was apply for the Disability Tax Credit. Even with an ALS diagnosis, I was originally denied! I filed an appeal on my own (never used lawyers) and was approved. See my Resource section below for other financial claims you can make on your taxes.
- Bank Fees - With proof of my DTC, my bank has waived my monthly checking fees. It took me 5 years to discover that one!
- Blog - In the beginning, I found it overwhelming to keep friends and family apprised of my health. I have family spread across the world. I know that many people were interested in my condition, however, they also wanted to respect my privacy and not overwhelm me. I found by creating this website, I was able to share what both Travis & I were going through, my progression, my challenges and my gratitude. It is a way that people can check in with you in their own time. It is quite easy to set up a blog these days, but if that feels too much for you, there are websites already set up in which you can share your health updates with whomever you choose.
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SURVIVING
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WHAT WOULD YOU DO?
Many people muse about what they would do if they were given a year to live. For us this is a reality. Why not change this into a positive by creating your own bucket list?
Many people muse about what they would do if they were given a year to live. For us this is a reality. Why not change this into a positive by creating your own bucket list?
- Places you would like to visit
- People you want to connect with
- Activities you have never experienced
- Food you haven't eaten
- Concert you want to see
- A performance you want to create (karaoke, presentation)
- Advocacy you want to participate in
- Something you want to learn
- Create (art, music, photobooks, music, poetry, letters)
PHYSICAL
- Dizziness - Often I've woken up in the morning feeling dizzy. There has never been an explanation for it but I've found an article that may help: How to Avoid Dizziness by Nodding Your Head
- Buddha Belly
- Drooling
- Cramping -
- Medical Marijuana - Click on the following link for answers about popular cannabis questions: "You asked, we answered". Preclinical data from studies show that marijuana may in fact be neuroprotective. It can be useful to treat symptoms of ALS such as pain, muscle cramping, increase appetite, help with sleep, anxiety and depression. THC is the psychoactive ingredient "the high", if you are hesitant you can use CBD only which can relieve symptoms without the high. Check out this article; How Medical Marijuana can help with ALS.
- Turning in Bed - What a strange thing to be at a place where turning over in bed feels like climbing Mt. Everest. Satin sheets never appealed to me, however, I found a great set at Costco that makes turning so much easier, I almost slide when turning. They are the Kirkland Signature 100% Cotton Sateen Sheet Set I think the fact that they are "sateen" and not satin, that makes them comfortable to sleep in.
- Teeth - Using a toothbrush takes more strength than one can imagine, especially while trying to hold on to my counter to keep from falling down at the same time. Using an electric toothbrush is a great help. Ours is a Philips Sonicare from Costco. It comes with two toothbrushes (so your partner won't get jealous) and travel cases. With that, flossing is near impossible, so we bought a Waterpik Water Flosser again from Costco (I swear they don't give me any money for these recommendations), so much easier. Of course many people think "why even bother going to the dentist when you only have a couple of years to live?". Although never a fun outing, I recommend it because the last thing you need when living with ALS is even more medical issues.
- Circulation - With a lack of circulation I usually feel cold. When I am cold my muscles work even less than usual. My feet have swollen from a size 8 to a size 9.5. I have had to replace all my footwear. My hands and feet are constantly cold. I hate wearing socks though as I also sweat! To help, I always have my feet in a raised position, and on particularly cold nights I use a hot water bottle. My cat helps by sleeping on my feet! I use wrist warmers at home which helps keep my hands warm and gives me use of my fingers. My fingers are also swollen, so I now wear my wedding rings on a chain around my neck (closer to my heart awwww).
- - Constipation - Never experienced it in my life until now. Apparently, it can result due to inactivity. I also feel (maybe TMI) that I am not strong enough to push. Make sure you drink plenty of fluids, have fibre in your diet and you can use Miralax or Restoralax when needed. They are not laxatives, they simply help lubricate to make things flow more easily! Also, because I use a toilet riser I am higher up and my feet aren't secure on the ground for pooping, so we bought an Ikea footstool for better positioning.
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Henckels Tea Mug
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- Clothing - Tommy Hilfiger Adaptive Clothing
- Shoes - BILLY Footwear
- Aspirating - Due to excessive drool with ALS there are times when I feel I am choking on my own saliva. Often, it makes me cough and I just need to cough for a while and a sip of water helps soothe my irritated throat. It is important for me to tell those I spend time with as it looks like I'm choking but I DO NOT need the Heimlich maneuver nor a slap on the back.
FLU SHOT
I cannot stress enough the importance of getting your flu shot. Not only for you, but for friends and family as well. I won't allow anyone to stay with me who does not get their flu shot. When I get a cold, I am wiped out for at least 10 days. I have very little energy to begin with so it saps everything I have left. You can imagine what the flu does to me! Often pALS will end up hospitalized with the flu, which can turn into pneumonia, and can kill us. It may seem obvious and I hate to say it, but we are considered a vulnerable population. Not only is the science out there, but my friendly community health nurses will tell you the same. For some reason, there is a lot of misinformation out there when it comes to the flu shot, but I can promise you have a higher chance of dying from the flu than you do of suffering any catastrophic symptoms from the shot itself. I have also heard the argument from people; "I don't need the flu shot, I never get the flu". Well that is great for you, but you can carry the flu without displaying symptoms and pass it on to other vulnerable people such as children, seniors, and people living with illness.
Check out the CDC website on flu vaccination: Prevent Seasonal Flu
Don't be a dick, get the prick! (pretty bad I know, but my best try at coming up with a catchy slogan, let me know if you can do better)
Hand sanitizer - Carry it with you and use it whenever you have touched public objects. I also keep it around the house, of course hand washing is the best option but people forget so a strategically placed pump can be a gentle reminder.
I cannot stress enough the importance of getting your flu shot. Not only for you, but for friends and family as well. I won't allow anyone to stay with me who does not get their flu shot. When I get a cold, I am wiped out for at least 10 days. I have very little energy to begin with so it saps everything I have left. You can imagine what the flu does to me! Often pALS will end up hospitalized with the flu, which can turn into pneumonia, and can kill us. It may seem obvious and I hate to say it, but we are considered a vulnerable population. Not only is the science out there, but my friendly community health nurses will tell you the same. For some reason, there is a lot of misinformation out there when it comes to the flu shot, but I can promise you have a higher chance of dying from the flu than you do of suffering any catastrophic symptoms from the shot itself. I have also heard the argument from people; "I don't need the flu shot, I never get the flu". Well that is great for you, but you can carry the flu without displaying symptoms and pass it on to other vulnerable people such as children, seniors, and people living with illness.
Check out the CDC website on flu vaccination: Prevent Seasonal Flu
Don't be a dick, get the prick! (pretty bad I know, but my best try at coming up with a catchy slogan, let me know if you can do better)
Hand sanitizer - Carry it with you and use it whenever you have touched public objects. I also keep it around the house, of course hand washing is the best option but people forget so a strategically placed pump can be a gentle reminder.
DRIVING
Living with ALS means losing independence which is extremely frustrating. A huge blow to independence is giving up the ability to drive. For the first year or so I was able to continue driving as the car did all the work. I had a push button ignition and the car had the strength for me. It is a personal choice when to give up driving. The day I gave up driving was the day I realized I felt unsafe taking a step (even while wearing my AFO's) without holding onto something. I suggest giving it up as soon as you experience symptoms as it is not worth risking other's lives for anything. What if you had a muscle cramp or spasm in your leg while pressing the accelerator?
I suggest using local transportation services for people with disabilities, in Ottawa it is called Para Transpo.
Of course Uber and Lyft ride share services are useful.
To be completely honest with you, my anxiety has prevented me from using Para Transpo on my own (I am afraid of getting stuck somewhere) so I have relied completely on the kindness of friends and family to transport me. With help, I am able to transfer from my chair to the car and back.
As I can still transfer we have yet to look into purchasing a wheelchair van so I can't help you with that. We are waiting until we feel it is necessary before thinking about it. My manual chair folds up and fits in the trunk of our car.
Apply for an accessible parking permit ASAP. You can use it in any car you travel in.
Living with ALS means losing independence which is extremely frustrating. A huge blow to independence is giving up the ability to drive. For the first year or so I was able to continue driving as the car did all the work. I had a push button ignition and the car had the strength for me. It is a personal choice when to give up driving. The day I gave up driving was the day I realized I felt unsafe taking a step (even while wearing my AFO's) without holding onto something. I suggest giving it up as soon as you experience symptoms as it is not worth risking other's lives for anything. What if you had a muscle cramp or spasm in your leg while pressing the accelerator?
I suggest using local transportation services for people with disabilities, in Ottawa it is called Para Transpo.
Of course Uber and Lyft ride share services are useful.
To be completely honest with you, my anxiety has prevented me from using Para Transpo on my own (I am afraid of getting stuck somewhere) so I have relied completely on the kindness of friends and family to transport me. With help, I am able to transfer from my chair to the car and back.
As I can still transfer we have yet to look into purchasing a wheelchair van so I can't help you with that. We are waiting until we feel it is necessary before thinking about it. My manual chair folds up and fits in the trunk of our car.
Apply for an accessible parking permit ASAP. You can use it in any car you travel in.
EQUIPMENT
- Don't get in your own way
- Hand rails
- Grab Bars
- Lift Chair
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Ankle - Foot Orthosis (AFO's)
My first symptoms of ALS began with foot drop. I was constantly tripping, and whereas in the past I could catch myself, suddenly I found myself always landing on my face. I would check behind me to see what I had tripped on, and nothing was there. I discovered I was tripping due to foot drop. I began with an AFO for my left foot. It was cast and molded exactly to my leg and has a plastic bottom that slides into my shoe to keep my foot at a 90 degree angle. I was even able to choose my design! The Assistive Devices Program (ADP) paid for 75% and my insurance covered the balance. It cost about $800 for one! I have since received one for my right foot as well. Not only does the AFO help keep you from tripping, it gives more strength to your legs. When I was first diagnosed and traveled to Italy I was still able to walk some distance. I wore my AFO and felt comfortable exploring. One day I wanted to wear cute flats instead of my running shoes, and after a few short hours I could barely make it back to the hotel without collapsing. Today, I wear them even if I am mostly in a wheelchair, as they give me strength when transferring. |
Leopard Print!
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Showering
As much as I try to live in the moment and not think about what is coming next with my progression, it is helpful to plan ahead. I've mentioned before that I needed to move out of my three floor walk up condo. In the midst of trying to deal with my diagnosis, selling our condo and looking for a place to live, we hadn't even thought about my bathing needs as I wasn't at that point yet. We moved into a 1 bedroom, 1 1/2 bath apartment. With a shower tub 🙄. Obviously we were overwhelmed and hadn't really grasped what was to come (I still can't, to tell you the truth). Once again we had to move and chose a two-bedroom (figuring people would be visiting me more than I could them) with two baths, the master ensuite having a walk-in shower. It is still not perfect as it has a small lip to step into the shower, but I'm pretty sure we can deal with that when necessary.
As much as I try to live in the moment and not think about what is coming next with my progression, it is helpful to plan ahead. I've mentioned before that I needed to move out of my three floor walk up condo. In the midst of trying to deal with my diagnosis, selling our condo and looking for a place to live, we hadn't even thought about my bathing needs as I wasn't at that point yet. We moved into a 1 bedroom, 1 1/2 bath apartment. With a shower tub 🙄. Obviously we were overwhelmed and hadn't really grasped what was to come (I still can't, to tell you the truth). Once again we had to move and chose a two-bedroom (figuring people would be visiting me more than I could them) with two baths, the master ensuite having a walk-in shower. It is still not perfect as it has a small lip to step into the shower, but I'm pretty sure we can deal with that when necessary.
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Always use a bathmat when showering so you don't slip. The shower chair I use has a back and arms. With a super floor to ceiling pole on the outside of the shower and a suction cup grab bar on the inside I am able to get to the chair on my own. We (Travis) removed the glass shower doors altogether and replaced them with a shower curtain which makes the threshold very low.
Although the shower chair is waterproof, the pins to raise the chair are not. Rust started to drip onto the shower floor. After replacing the chair twice, Travis bought rubber sealant and sprayed the entire bottom of the chair to stop the rust from dripping down. My arms aren't strong enough to wash my hair so my home attendant washes my hair for me. Travis replaced our shower head with one that can convert to a hand held and goes back into the original position easily (I think it is held in place by a strong magnet). He also found a suction cup holder for the shower head. Contact your ALS Society as they will often help with bathroom equipment. |
Danny pole dancing on my super pole
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Toilet Seat Riser
Toilet Seat Riser & Bidet
One of my greatest frustrations is going to the bathroom. I never realized how low toilets are to the ground, until my thighs were unable to get up from the toilet. Accessible toilets don't work as they are too low for me as well. When I go out, I purposely don't drink before hand, and cannot go out for more than 4 hours unless I am with someone who can physically lift me off the toilet (and lower me down as I would just fall). At home, I use a toilet seat riser with arms. My parents bought one for their place as well so I can be independent when visiting.
Bidet - Chalk this up to never knowing I needed one until Travis bought it for me. I had seen them all over Europe but had never used one. I love it! Travis spent extra to get one with all of the features including seat warmer, self-cleaning, automatic lid riser and remote control with front & rear washer and dryer. I probably wouldn't have bought the automatic lid riser but now I realize I need it!
Our bidet fits on our toilet seat riser. Easy to install. You can get one elongated or rounded.
You can adjust the settings easily. They have really come down in price, we just saw the Toto washlet at Costco.
One of my biggest fears of needing to be wiped is no longer an issue, worth every penny!
One of my greatest frustrations is going to the bathroom. I never realized how low toilets are to the ground, until my thighs were unable to get up from the toilet. Accessible toilets don't work as they are too low for me as well. When I go out, I purposely don't drink before hand, and cannot go out for more than 4 hours unless I am with someone who can physically lift me off the toilet (and lower me down as I would just fall). At home, I use a toilet seat riser with arms. My parents bought one for their place as well so I can be independent when visiting.
Bidet - Chalk this up to never knowing I needed one until Travis bought it for me. I had seen them all over Europe but had never used one. I love it! Travis spent extra to get one with all of the features including seat warmer, self-cleaning, automatic lid riser and remote control with front & rear washer and dryer. I probably wouldn't have bought the automatic lid riser but now I realize I need it!
Our bidet fits on our toilet seat riser. Easy to install. You can get one elongated or rounded.
You can adjust the settings easily. They have really come down in price, we just saw the Toto washlet at Costco.
One of my biggest fears of needing to be wiped is no longer an issue, worth every penny!
Transport Chair
In the beginning, this walker/wheelchair (sometimes called a rollator) was great for travelling. With my AFO's I was able to walk short distances, but when it came to airports or 5km ALS walks, I would grow tired and need to sit. One flip of the backrest and boom it was a wheelchair. Note that the difficulty with transport chairs are the small wheels, not so good for cobblestone or curbs. The back also does not have much support. I did love the basket to hold my bag(s). It was handy for the first few years of my diagnosis. I borrowed it from our local ALS clinic, though I have since returned it as it is no longer supportive enough for me.
In the beginning, this walker/wheelchair (sometimes called a rollator) was great for travelling. With my AFO's I was able to walk short distances, but when it came to airports or 5km ALS walks, I would grow tired and need to sit. One flip of the backrest and boom it was a wheelchair. Note that the difficulty with transport chairs are the small wheels, not so good for cobblestone or curbs. The back also does not have much support. I did love the basket to hold my bag(s). It was handy for the first few years of my diagnosis. I borrowed it from our local ALS clinic, though I have since returned it as it is no longer supportive enough for me.
Airgo Fusion F20 Side-Folding Rollator & Transport Chair
Walkers - Indoor & Outdoor
My good friend worked for a mobility specialist. He went into the warehouse and pulled a used Nexus walker that was slightly broken and donated it to me. Travis easily fixed it and it has become my "outdoor walker". I must use my AFO's when using it. So as to not track dirt into our apartment, I use a Costco Walker which is not only a fashion statement, but has handy compartments for my cell phone, tissue box, iPad, cat toys, etc. I would not recommend it for outdoor use as the wheels and brakes are not sturdy enough. Word of advice, do NOT use an aluminum walker with only two wheels. It is very difficult to turn around with.
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Works for everyone!
Costco Medline UltraLight Zebra
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Manual Wheelchair
Often you can access manual wheelchairs from your ALS loan cupboard. So try there first. What differentiates a manual wheelchair from a transport chair number one is the big wheels, and they are often built for more comfort. Unfortunately, the one we received from our loan cupboard was too large and heavy, especially for travelling, so we bought our own lightweight chair that anyone can fold up and lift into the trunk of a car.
After seeing one like it on a cruise, Travis stopped the person and asked to take a picture! It was the Karman Healthcare Ergonomic wheelchair. He loved that he could control the brakes and how small and lightweight it was. We bought it on Amazon and it has since gone down in price for Canadians. As you can see from the pictures, there is not much cushion in the seat. My OT helped me with ordering a Roho cushion so I can sit in the chair for longer periods of time. Would you believe the cushion itself cost $500? Luckily, my insurance covered 80% of it and it is a must. I use this wheelchair for travelling as I am too scared of airlines breaking my power chair!
Often you can access manual wheelchairs from your ALS loan cupboard. So try there first. What differentiates a manual wheelchair from a transport chair number one is the big wheels, and they are often built for more comfort. Unfortunately, the one we received from our loan cupboard was too large and heavy, especially for travelling, so we bought our own lightweight chair that anyone can fold up and lift into the trunk of a car.
After seeing one like it on a cruise, Travis stopped the person and asked to take a picture! It was the Karman Healthcare Ergonomic wheelchair. He loved that he could control the brakes and how small and lightweight it was. We bought it on Amazon and it has since gone down in price for Canadians. As you can see from the pictures, there is not much cushion in the seat. My OT helped me with ordering a Roho cushion so I can sit in the chair for longer periods of time. Would you believe the cushion itself cost $500? Luckily, my insurance covered 80% of it and it is a must. I use this wheelchair for travelling as I am too scared of airlines breaking my power chair!
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Power Wheelchair
I received mine with help through my Occupational Therapist. The government paid for 75% through the ADP program, my insurance (Great West Life) paid 80% of the rest and we ended up paying under $1000 for the remainder. It must be returned when I die as it is technically owned by the government. Important features include cushion, tilt, headrest and of course cupholder! We are currently looking into getting an attendant control as my arms, hands and fingers are beginning to cramp up and at times don't work so well.
I received mine with help through my Occupational Therapist. The government paid for 75% through the ADP program, my insurance (Great West Life) paid 80% of the rest and we ended up paying under $1000 for the remainder. It must be returned when I die as it is technically owned by the government. Important features include cushion, tilt, headrest and of course cupholder! We are currently looking into getting an attendant control as my arms, hands and fingers are beginning to cramp up and at times don't work so well.
EZ Lite Cruiser
The EZ Lite Cruiser is a compact lightweight power wheelchair that can fold up and fit in the trunk of your car. It is great for shopping malls and navigating smaller spaces . It is not so lightweight that anyone can lift it, however, my husband and brother have no issues. I have the first model and I think the newer ones are even easier to use and lift. I like the control of driving myself, especially while shopping, and it works for small homes and apartments. I did not yet have to worry about buying a wheelchair van. It does not have neck support, and definitely not as smooth as a ride as my Power Chair but was great during my early years of ALS. They now have free shipping to Canada.
The EZ Lite Cruiser is a compact lightweight power wheelchair that can fold up and fit in the trunk of your car. It is great for shopping malls and navigating smaller spaces . It is not so lightweight that anyone can lift it, however, my husband and brother have no issues. I have the first model and I think the newer ones are even easier to use and lift. I like the control of driving myself, especially while shopping, and it works for small homes and apartments. I did not yet have to worry about buying a wheelchair van. It does not have neck support, and definitely not as smooth as a ride as my Power Chair but was great during my early years of ALS. They now have free shipping to Canada.
Lift Recliner Chair
SMART TECHNOLOGY
- NEST Thermostat
- August Smart Lock
- Hue Lights
- Alexa
- Sonos for music
Augmentative Communication
I still have the ability to speak (too much according to my husband), however, am noticing slurring especially with "S" sounds, and later in the day when fatigue sets in. So I'm a newbie to this section. I will update as I go.
Voice Banking - Voice banking is a process that allows a person to record a set list of phrases with their own voice, while they still have the ability to do so. This recording is then converted to create a personal synthetic voice. I spent several weeks doing this using the "Modeltalker" program which was free at the time. So I've done it, but where to go from here? No idea. See below for some resources on the subject.
To Bank or Not to Bank? I'm Voicing my Opinion by Dagmar Munn
Voice Banking by the MND Association
Voice Banking - Modeltalker by ATandMe
While my speech is still working, my arms are failing me. I spend much time on the computer and have been experiencing difficulty with typing and forearm cramping. My augmentative communication OT shared that the most recent Apple update IOS 13 provides voice control for your Apple devices. You can do everything using your voice, all hands free. As our iMac was too old to continue with updates we (much to my husband's delight) had to buy a new one. We opted to go with the larger screen to make voice navigation even easier. I am practicing now and it is like learning a new language. It becomes easier as you learn the specific commands. YouTube videos make great tutorials.
I still have the ability to speak (too much according to my husband), however, am noticing slurring especially with "S" sounds, and later in the day when fatigue sets in. So I'm a newbie to this section. I will update as I go.
Voice Banking - Voice banking is a process that allows a person to record a set list of phrases with their own voice, while they still have the ability to do so. This recording is then converted to create a personal synthetic voice. I spent several weeks doing this using the "Modeltalker" program which was free at the time. So I've done it, but where to go from here? No idea. See below for some resources on the subject.
To Bank or Not to Bank? I'm Voicing my Opinion by Dagmar Munn
Voice Banking by the MND Association
Voice Banking - Modeltalker by ATandMe
While my speech is still working, my arms are failing me. I spend much time on the computer and have been experiencing difficulty with typing and forearm cramping. My augmentative communication OT shared that the most recent Apple update IOS 13 provides voice control for your Apple devices. You can do everything using your voice, all hands free. As our iMac was too old to continue with updates we (much to my husband's delight) had to buy a new one. We opted to go with the larger screen to make voice navigation even easier. I am practicing now and it is like learning a new language. It becomes easier as you learn the specific commands. YouTube videos make great tutorials.
Check out the following YouTube episode on A.I. and ALS. It provides such hope for the future of augmentative technology. I feel proud and empowered to have provided one small voice to this project.
The ALS Therapy Development Institute (ALS TDI) is proud to announce that it is featured in episode two of “The Age of A.I.,” a new YouTube Originals documentary series hosted by Robert Downey Jr. The episode features former NFL linebacker Tim Shaw, who is battling ALS, as he works with a team at Google to help restore his ability to communicate, testing the prototype of Project Euphonia for the first time. You can learn more and watch the whole episode here.
The ALS Therapy Development Institute (ALS TDI) is proud to announce that it is featured in episode two of “The Age of A.I.,” a new YouTube Originals documentary series hosted by Robert Downey Jr. The episode features former NFL linebacker Tim Shaw, who is battling ALS, as he works with a team at Google to help restore his ability to communicate, testing the prototype of Project Euphonia for the first time. You can learn more and watch the whole episode here.
TRAVEL
- Do it now!
- Many airlines offer free attendant tickets, known as companion fare for air travel within Canada - Air Canada - WestJet - Porter
- ALS Society for loan cupboard equipment borrowing while visiting another province
- Alternatively equipment rentals
- Travel day, plan on going directly to hotel/place you are staying go straight to bed, room service
- Cruising
- Worth paying more for direct flights
- Bring only 1 suitcase between you & your partner
- Private Tours
- Accessible websites - Curb Free With Cory Lee
ENTERTAINMENT
- Reading - I love my iPad. I have a library app called Overdrive which lets me connect to my local library and read both regular and audiobooks for free. I find it much easier than holding a book and turning the pages.
- Podcasts - I'm not a very good napper, but with ALS I need to rest and rest often. I also get migraines and sometimes watching TV or reading a book is too difficult on the eyes. Podcasts are the perfect solution, I can close my eyes and rest easily without being bored or overthinking things. They are also awesome for long road trips! There are all kinds, news, comedy, etc, but my favourite is True Crime, especially My Favorite Murder. What are your favourites? Let me know so I can list them and share with others! SSDGM
- Streaming - Netflix of course. We also enjoy Amazon Prime for only $79/year you not only get free shipping (online shopping is a must for Christmas), but you get series, movies, music and books to read all included in the annual membership. I also gave in and got a one year membership to Crave TV (HBO) for Travis for Christmas. Worth it for Game of Thrones!
- Museums - Museums are usually fantastically accessible with family washrooms. I have found many allow your attendant free admission, don't forget to ask!
- Concerts - I love music so much. The good news is you can usually find wheelchair accessible seats for popular shows that are often sold out. I've seen U2, Elton John, Pearl Jam, Bon Jovi and many others since my diagnosis. I've had a terrible experience at festivals (Bluesfest), but also great experiences at less busy ones like Folkfest. At Folkfest, my attendant was given free admission, I just called ahead of time.
- Access 2 Card - The Access 2 Card is an Easter Seals program that is for people of all ages and types of permanent disabilities who require the assistance of a support person at hundreds of participating entertainment, cultural and recreational venues across Canada. You pay for admission and your attendant gets free admission. It costs $20 for 3 years and depending on the city includes venues such as movie theatres, museums, festivals and local theatres. Check out their website for participating venues near you.
- Puzzles - While I still have some use of my arms, puzzling helps to get me out of my own head, it's very satisfying and relaxing for me.
- Cards - I love to play cards with people, however, it became too difficult to hold the cards. I found this nifty card holder that allows me to keep my cards organized, while putting them down. There are plenty of different types to choose from, just google "playing card holder".
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Carol's Comfort Sheet
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ATTITUDE
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ATTENDANT CARE
I am fortunate enough to live in a province where I receive support financially to hire an attendant and/or Personal Support Worker (PSW). This allows me to stay in my home with help while my husband is at work to pay the rent! - Direct Funding
I am fortunate enough to live in a province where I receive support financially to hire an attendant and/or Personal Support Worker (PSW). This allows me to stay in my home with help while my husband is at work to pay the rent! - Direct Funding
- List of Tasks
- Massage for circulation
- Where to find attendants/post job descriptions - Government of Canada Job Bank, Universities & College PSW programs, Facebook, Independent Living Centres
ADVOCACY
- Write to your Member of Parliament and request a meeting. Ask them if they will support CAPTURE ALS. When people hear that 3000 Canadians are living with ALS, many feel that isn't enough to fight for (depressing I know). But that does not "capture" the whole picture. In fact, 1 in 400 people have a lifetime risk of contracting the disease. The reason that the number of Canadians LIVING with ALS feels low is because we DIE so quickly.
- Participate in a Walk to End ALS. When I was first diagnosed, I was originally afraid of connecting with the ALS community. I feared seeing those further along in progression and didn’t want to be part of such sadness. I couldn’t have been more wrong, while you meet people in various stages of their diagnoses; the atmosphere is one of positivity and support. Not only is the Walk an uplifting event, it is crucial and the main fundraiser for ALS Canada every year. It has been tough outliving my diagnosis, as I have to ask the same people year after year for donations. After 6 years of fundraising you would think people would get tired of donating every year, however, this year I am proud to say we had our best fundraising yet!
- Organize an ALS Fundraising event. Of the many I have attended, participation means much more than raising money. Not only are you raising awareness, but they are fun, inspiring, and instil a sense of belonging and empowerment. Contact your ALS Canada Regional Manager and/or ALS Canada as they can help guide you, spread the word, and may even send staff to help discuss what ALS is. Ideas include: Curling Bonspiel, Silent Auction, Trivia Night, Dinners, Comedy Night, Karaoke, Bake Sale, Lemonade Stand, Golf Tournament, Birthday Party, Wedding Donation, Skateboard event, Music Concert, Giftwrapping, Raffles, Kilt walk, Plane Pull. Please share your ideas!
- Write your Local Media. Whether to support an ALS fundraising event, pointing out non-accessible features of your city, or simply sharing your story, local media (newspapers, TV) is an excellent way to get the word out.
- Social Media. Facebook, Twitter, Instagram, that is where most people are at these days and the best way to cast a wide net. Don't forget to tag those who you would like to be informed (especially politicians!)
- Speak to Students. I have spoken to medical students about living with ALS as well as residents about how to deliver a terminal illness diagnosis.
- Become an Ambassador. Express your interest in participating in local, national or global organizations that fight ALS. You can serve on a board, become a Walk volunteer, be a patient advocate and much more. There are many roles for people living with ALS. Our voices are needed to instigate momentum and change.
- Research Studies. There are a variety of ways to participate in research studies. Ensure you are on the email list of your ALS organization. My ALS regional manager often forwards requests of researchers searching for pALS and cALS input on a variety of topics. I am participating in a study from ALS TDI called the Precision Medicine Program (PMP). If you are living with ALS and would like to contribute to much needed research, you can do so from the comfort of your own home! It is easy to sign up, and fill out the questionnaires.
- Clinical Trials. Clinical trials are research studies that use human volunteers to test new therapies. For more information click Clinical Trials in Canada.
- Blog.
CAREGIVERS
- Ensure your affairs are in order, assign a Power of Attorney and create a will.
- The Last List - As I am the one in our family who manages paperwork, bills, etc. I created a list of who to notify, what equipment needs to be returned to who, monthly bills, insurance contacts, accounts, passwords, and the like. Everything my husband needs to know for when I die. Saves him trying to think at a time when I can imagine thinking will be difficult.
- Make sure cALS get their flu shot.
Misc (not sure yet which section to put this in)
- Greeting cards & gifts for the relationships we really have - Emily McDowell
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RESOURCES
Access 2 Card
The ALS Association
ALS Clinic - The Ottawa Hospital
ALS News Today
ALS Society of Canada
ALS Therapy Development Institute (TDI)
ALS Untangled
Assistive Devices Program - Ontario (ADP)
CAPTURE ALS
Champlain Local Health Integration Network (LHIN)
Citizens With Disabilities - Ontario (CWDO)
Curb Free With Cory Lee
Direct Funding: Self-Managed Attendant Services in Ontario
Hospice Care Ottawa
International Alliance of ALS/MND Associations
Let's Roll
Medical Assistance in Dying
Ottawa Independent Living Resource Centre
Para Transpo
Patients Like Me
Project MinE
Tax Credits and Deductions for Persons with Disabilities
Facebook Groups:
ALS Canada
ALS Forum for Women
ALS Survivors 5+ Years / Slow Progression
ALS We are in it together
ALS - Patient and Caregiver tips for every day living
Canadian pALS & cALS (ALS - Lou Gehrig's Disease)
Focusing on the Positive: Life with ALS/MND
Team ALS Ottawa
Traveling with ALS
Film & Literature:
-For me, watching certain things on TV or reading about people dying at times might trigger depression. There was a Grey's Anatomy episode that set me crying for 24 hours, so get to know your triggers! There are many books, films, etc. about ALS. I have chosen to share the ones that feel safe and useful for me.
A Guide to Living with ALS - Jason Clement (manual)
Gleason (documentary)
Grateful; The Jenni Berebitsky Story (documentary short) & ALS Saved My Life (book)
Living with ALS - ALS Society of Canada (manual)
Ted Talks: Nancy Frates: Meet the mom who started the Ice Bucket Challenge
The Best of the Worst News: Tales of Inspiration from Around the World and My Life with ALS - Norman MacIsaac (book)
The Pride of the Yankees (Hollywood movie based on Lou Gehrig's story)
The Theory of Everything (Hollywood movie based on Stephen Hawking's story)
Tuesdays With Morrie - Mitch Albom (book)
