THE ALS COMMUNITY

ALS is a RARE disease. Doctors are no even sure what causes it. It's a unknown like many other neuro diseases. There is so much we don't understand about the brain. ALS is like AIDS 40 years ago. They say it's an underfunded disease, not incurable. But what about all of the other neuro diseases out there?? Alzheimer, Huntington's disease, Parkinsons..

The point is not a lot of people are familiar with ALS. Not even a lot of medical professionals or assisted living homes know a lot about it. In fact, many assisted living facilities are not equipped to care for ALS patients because of how extensive their needs are.

I certainly had no idea what the f**k to do at first. In fact, I'm still learning as we go. I've always been pretty independent and resourceful. But even I need help sometimes and I've learn that asking for help is totally necessary with this disease.

I found the ALS forum early on, before my mom had even received a definitive diagnosis. You learn that the ALS community is very involved. Even after their PALS (person with ALS) has passed people remain involved - offering advice to newcomers. And I am SO grateful to have them.

There are no judgements made on the site. Even if you have to rant and be a complete b*itch for 2 minutes, they let you. People respond. Better yet, people understand.

MODIFICATIONS THAT HAVE MADE LIFE EASIER

With bulbar onset ALS my mom's symptoms have progressed faster than many ALS patients. One weekend she's up and about and the next we're dealing with accidents and difficulty getting out of bed and off the toilet seat. That is the reality of ALS. It is an ugly disease.

We are constantly adapting to new changes. Here are some fairly affordable adjustments that we made to make life easier:

Indoor Walker: We got this way before my mom needed it. In fact, she refused to use it at first. One thing I've learned from all of this is she is a stubborn lady! This was covered by insurance and my mom uses it all the time. One time she didn't use it and we found her lying on the floor in the kitchen when we got home.. That was traumatic enough for all of us. Now she uses it every day.

We also got a little basket that attached to it so she can carrying a few things around like a glass of water or extra tissues. 

Raised toilet seat: The higher the seat, the better. This applies to seats in general if your PALS is experiencing weakness in their legs. The elevation gives a bit of momentum to help my mom stand up. Also the added handles on each side help a lot too. 

Depends: So I'm not sure how well these will work yet as my mom hasn't had another accident since she's started wearing them. She had 3 three before we lost our shit and decided we MUST do something. Luckily with more frequent visits to the bathroom, she hasn't had another accident yet. A little tip someone gave my on the ALS forum is to wear two depends at once - cut a small hole in the first one so the moisture can pass through to the second. 

This week we are looking into hospital beds, hospices and in-home caregivers. Stayed tuned for more to come.

TIRED

It's been almost 9 months of living with ALS now and I think I can speak for everyone when I say we are tired. Both mentally and physically. People always ask me how my mom is doing.. and it's hard to come up with an answer. There's no chance of her improving.. and every day is a challenge. Some days more so than others. But none of it is easy.

Instead I just say "good" because that's what people want to hear? Few people ACTUALLY want to know what's going on. People don't like to talk about the hard stuff. And quite frankly I probably don't want to tell them about it either.

I spend all day thinking about ALS.. things I need to get done.. people I need to call.. equipment I need to order. It's exhausting.

Recently my mom has stopped being able to get out of bed on her own. So bathroom breaks are harder. We have to be more aware if she needs something. And a very unpleasant thing has been happening lately.. accidents. With my mom's legs getting weaker, it takes her longer to get to the bathroom. And I'm not sure if she is also dealing with incontinence. Last week alone she had 3 accidents while getting from her bed to the bathroom across the hall.

That's when we had to switch it up and get her depends. For those of you lucky enough to not know what those are - they are adult diapers. We are hoping to hold off getting a catheter for a while longer.

I can't remember what percentage of caretakers are said to go through depression but it was insanely high. It's not an easy thing to go through. It's hard to be a part of normal society when your whole world revolves around this disease. And of course I wouldn't have it any other way. I love my mom. She's my best friend. And she is handling everything with such patience and grace.

But if one day I had face this beastly disease myself, I would not chose to.

HAPPY LUNAR NEW YEAR!

This year we celebrated Lunar New Year with dinner at home. Whenever my mom hosts dinner, she likes to go all out. We had some of her favorite dishes: silken tofu, glass noodles, cauliflower with scallops, chicken for good luck, steak and soup!

My mom loves to cook and growing up she did all of the cooking every holiday. Seriously do not know how she does it. I get exhausted from just watching everything she does! Even now, she will cook for hours. It takes more time because she is losing her fine motor skills, but she is stubborn and won't let anyone help her. :)

At the end of the night she disappeared to her room for a little while and I got worried. When I peaked in she was busy secretly stuffing red envelopes. How adorable is that??

HAPPY NEW YEAR FROM SAN DIEGO!

After we got over the initial shock of my mom's diagnosis I got busy planning (since that's what I do best). One of the things on my checklist was planning a trip ASAP. After all, traveling is one of life's greatest pleasures. My mom's passport had expired so that ruled out any international trips until we can get a new one. After googling "top places to travel to in the winter" we decided on San Diego!

This is the first big family trip we have taken since I was in high school and I completely forgot how awesome, yet hectic it is to travel with so many people! Nonetheless it was a great trip with lots of beautiful new memories created.

New Years Day at Mount Soledad & Balboa Park

The weather was on our side an we got to see stunning views of San Diego and even a bit of Mexico.

Afterwards we drove to Balboa Park because my mom LOVES flowers. Unfortunately the garden was closed that day, but it was still fun walking around and seeing the beautiful architecture. Perhaps a trip to Victoria, BC in the Spring for flowers? Let me know if you have suggestions! 

We bought this transport chair off Amazon before the trip and it was a lifesaver! It is super light and portable so we were able to take it pretty much everywhere. My mom is currently experiencing weakness on the right side of her body so she has a hard time walking far. We had fun taking turns pushing her around the park, zoo and even got some shopping done.

San Diego Zoo

My mom's favorite part of the trip was our visit to the zoo! We waited almost an hour at the Panda exhibit but it was well worth it. The baby panda was awake and munching on some delicious bamboo when we got there. 

We ended the trip with dinner at the Melting Pot in La Jolla. It was very entertaining watching everyone figure out how to cook the food. We liked it so much we may have to get a hot pot of our
own!

Had time for a quick trip to the beach before heading to the airport. It was a nice little break from the freezing temperatures in Seattle. 

All smiles on the way home!

We had a great start to 2016 and a busy month ahead of us! This week my mom is scheduled to get her PEG tube surgery (which she is not too happy about) so send us lots of happy thoughts and energy. She has been difficulty with swallowing and this will help her gain some weight back which is very critical. We also found a town home for all of us in Issaquah and will be moving mid month! Wasn't aware I would become an "Eastsider" so soon, but I am a little excited. More importantly I will get to see my mum every day. Hopefully she doesn't get sick of us. :)

Thanks for reading and hope you all had a wonderful New Year with your loved ones!

MY MOM

My mom has always been a caregiver. From the time I was born until now she has always had an instinct to care for others. She was born and raised in Guangdong, China in a little village. At the age of 26 she met my dad who was vacationing in China at the time. After they wed she remained in China to care for my dad's elderly mother, my grandma, until she passed away. She had me when she was 30 years old and my sister at 32.

Once we moved to Seattle in 1993 she became a stay at home mom and took care of my sister and I. We were spoiled to say the least with the amount of love and care she provided us. Not a lot of children have the privilege of growing up with both parents around the home all the time. My mom seldom left us alone. I remember at one point she started taking classes at a community college and my sister and I would get really upset when she left in the mornings. To make us feel better, she would leave little pieces of candy next to our bed for us to have when we woke up. 

In addition to being a full time homemaker she would also save & send money to her family back home. My parents helped my cousins through school in China since their parents weren't able to. They both were and are some of the kindest people I know. 

My dad was quite a lot older than my mom and suffered a lot of health problems before he passed 5 years ago. He needed a lot of help in those years and she was his primary caregiver. From cleaning to feeding and administering his medication, she did it all with grace and patience. 

After my dad passed I often worried she would be lonely and not have enough to do. But she seemed to enjoy life - met new friends, went shopping, took our dog for walks. It is hard to not fall in love with my mom once you meet her. Even when she was in the hospital getting poked and woken up at odd hours, she was very sweet to everyone. All the nurses and doctors loved her.

Now it is our turn to take care of her. I only pray and hope that we can take care of her as well as she's taken care of everyone around her. She deserves so much more than this life has given her, but there is still time. Time for many more happy memories and adventures together. 

If there is one thing this experience has taught me about life, it is that every day counts.

A NEW BEGINNING

The last couple of months have been incredibly challenging, life changing, heartbreaking, humbling and a wide range of other emotions for me. One thing I've learned through it all is that you really are stronger than you know.

On December 9th, 2015 my mom was diagnosed with ALS, also know as Lou Gehrig's disease. I'm sure many of you have heard of it because of the ALS ice bucket challenge a few summers ago. It is a progressive neurodegenerative disease that causes muscle weakness, paralysis and ultimately respiratory failure. There is no cure for ALS and the prognosis is generally 2-5 years. My mom has a rare form of ALS called bulbar onset. It started with slurred speech and swallowing difficulties. Most of her weakness is in her mouth and tongue, but she still has the ability to walk and move around right now. However, the course of this disease is unpredictable so we just have to take is one day at a time and appreciate every moment we get.

While there are many things that we will have to adjust and adapt to, this diagnosis does not mean the end of a life; it is just the beginning of a new one. I've not completely come to terms with it yet and I know there will be a lot of dark times coming our way, but there will also be many happy ones. I've created this space to document the life lessons I will learn along the way. I know there are other people out there experiencing a similar situation and I hope documenting our journey can be of help in some way - whether it be tips on caregiving or brining awareness.