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 with ALS
*cALS = caregiver for 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 with ALS
*cALS = caregiver for 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!
SURVIVING
- Find a therapist you trust. I went to the psychologist who was provided to me under health care, but he was across the city and I found myself sweating profusely with the thought of seeing him. I needed a therapist not only for myself, but for Travis, as he is the only one who has seen my darkness, my impossible thoughts and the times when I sob uncontrollably. In order to make it work I see her every other week, in terms of finances as well as not over scheduling myself.
- Hospice Care - Many people shy away from hospice thinking it is only for those whose death is imminent. In fact, they have many services for people living with terminal illnesses. Services in Ottawa are free of charge and include counselling for both the pALS and cALS, day program, respite care and volunteers.
- "Anything Worth Doing Is Worth Doing Badly" - invaluable for someone with unrelenting standards for herself.
- Balance between living life and resting. I would often have one day out alternating between 1 or 2 rest days, and for me a day out can be as simple as an appointment or two.
- Rest Guilt-Free. With control being a major factor in my personality, I had to give myself permission to rest. It is a difficult lesson to learn for type A personalities who are always on the go. I have also had to learn how to express my true feelings and take care of myself without self-judgment (it's human to feel sorry for myself, I am not playing the victim). Also to give myself permission to put my needs first, and not self-sacrifice in order to be polite.
- Make Plans and say yes to everything - otherwise I would isolate, knowing that if I am having a bad day, it is okay to cancel.
- Fighting vs Accepting - When I was originally given my diagnosis, I was told "there is nothing more I can do for you". It is a personal choice whether to try certain regimens or treatments but beware, there are MANY scams out there. It makes me sick that people prey on the dying to plug their "herbal cures", but since snake oil salesmen have long been around the best you can do is educate yourself. ALS Untangled is an excellent website that reviews alternative and off label treatments, with the goal of helping people with ALS make more informed decisions.
Living with ALS: Guidelines for moving forward efficiently - is a great article written by Bob Taylor discussing living with the daily struggle that resembles a war in which you know you will lose.
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
- Aspirating
- Buddha Belly
- Drooling
- Cramping -
- Medical Marijuana
- 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).
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
- Shower Pole
- Hand rails
- Wheelchair, lightweight
- Fold up trunk power chair
- Bidet
- Toilet Seat Riser
- Grab Bars
- Lift Chair
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Ankle - Foot Orthosis (AFO's)
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Showering
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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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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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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.
SMART TECHNOLOGY
- NEST Thermostat
- August Smart Lock
- Hue Lights
- Alexa
- Sonos for music
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
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!
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ATTITUDE
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ATTENDANT CARE
- H
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. 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.
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.
RESOURCES
Access 2 Card
The ALS Association
ALS Clinic - The Ottawa Hospital
ALS News Today
ALS Society of Canada
ALS Therapy Development Institute
ALS Untangled
Assistive Devices Program - Ontario (ADP)
CAPTURE ALS
Champlain Local Health Integration Network (LHIN)
Curb Free With Cory Lee
Direct Funding: Self-Managed Attendant Services in Ontario
Hospice Care Ottawa
International Alliance of ALS/MND Associations
Jason Clement - A Guide to Living with ALS
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:
Living with ALS - ALS Society of Canada (manual)
Gleason (documentary)
Grateful; The Jenni Berebitsky Story (documentary short) & ALS Saved My Life (book)
Ted Talks: Nancy Frates: Meet the mom who started the Ice Bucket Challenge
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)
Access 2 Card
The ALS Association
ALS Clinic - The Ottawa Hospital
ALS News Today
ALS Society of Canada
ALS Therapy Development Institute
ALS Untangled
Assistive Devices Program - Ontario (ADP)
CAPTURE ALS
Champlain Local Health Integration Network (LHIN)
Curb Free With Cory Lee
Direct Funding: Self-Managed Attendant Services in Ontario
Hospice Care Ottawa
International Alliance of ALS/MND Associations
Jason Clement - A Guide to Living with ALS
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:
Living with ALS - ALS Society of Canada (manual)
Gleason (documentary)
Grateful; The Jenni Berebitsky Story (documentary short) & ALS Saved My Life (book)
Ted Talks: Nancy Frates: Meet the mom who started the Ice Bucket Challenge
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)