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Finding Freedom

Living Forgiven and Free

Guest Post: Patient Voices Matter

I’m grateful the National ALS Association gave me a platform to be heard.

The Official Blog of The ALS Association

This guest post is from Shelly Hoover, EdD, a member of the Patient & Caregiver Advisory Committee, and does not necessarily reflect the opinions of the Association staff, its Board of Trustees, or its chapters.

By guest blogger Shelly Hoover

Patient voices matter, yet the collective ALS patient community has been too patient and too quiet for too long.

The ALS Association led an unprecedented effort to develop an FDA Guidance Document for Industry. Here’s a quote from the introduction:

“In February of 2015, The ALS Association launched this effort to develop the first-ever community-driven drug development guidance for ALS with funding from the ALS Ice Bucket Challenge, bringing together over 100 participants including people living with ALS, caregivers, researchers, clinicians, and industry experts from across the world to contribute their expertise and experience. In parallel with this effort, a committee was formed to update the ALS clinical trial…

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Blessed Are Those Who Mourn

I’ve never known such pain as that of my broken heart, a physical presentation of indescribable grief.

My ALS journey, a treatise on grief, started with the loss of cute shoes, then my career and mobility. Sometimes I threw things in frustration, followed by the snot-faced ugly cry. You know, the cry that mocks your Kleenex.

I adjusted, adapted, accepted, and returned to gratitude. I found a new normal with the help of family and friends.

My arms and hands betrayed me next. Goodbye driving, feeding myself, and giving hugs.

So, I adjust and adapt. Technology helps. Yet, I haven’t found my new normal.

I’m in the throes of grieving and the tears show up uninvited. I keep the grief hidden until it forces its way to the surface, like a foreign body that needs to come out. There’s no stopping it and it hurts like hell.

I mourn the everyday use of my hands, but I’ll adjust to someone else bathing and feeding me. I use my eyes to type and text, hands free. What I’m having difficulty losing, that no one and no technology can replace, are the simple pleasures of teaching my grandchildren. I’d dreamed of being like my grandmas. One taught me to crochet, and I picked cucumbers with the other. We baked and shopped, read and played games. Above all, I felt their love.

With my grandchildren, I want to play silly duets on the piano. I want to make sandcastles on the beach, cookies in my kitchen, and strings of popcorn and cranberries for the Christmas tree. I want to play hide and seek and tickle their tummies when I find them. I want to hug them and put Band-aids on their knees. I have to accept the fact that I never will.

What I fear the most is being a disengaged grandma that isn’t able to show my grandkids how much they are loved and adored. I fear missing out. I’m profoundly sad and know I have to grieve before I can move past this.

I share my pain and struggles in this public forum because I promised to be authentic and transparent on my journey. I know it’s hard for you to read this. Please don’t feel sorry for me. Compassion is welcome, pity is not.

So, what now? Have you lost someone or something important? Allow yourself to grieve, it’s part of the healing process. Do you have a friend going through a difficult time? Come alongside and sit with him or her through the silence and tears. Don’t say or do anything to fix it. Just be there.

My tears will stop. My family and I will find a different way for me to stay engaged. I have no doubt. I will adjust and adapt. Eventually, I will accept it.

I’m Forgiven and Free and on the road to gratitude.

Get On Board or Get Out of My Way

I’m done playing nice.
I’m supposed to be dead.

This is an urgent call to action. Keep reading.
I need your help! 

With an ALS diagnosis in 2013, I was given 2-5 years. I’m alive but being protected to death by the FDA, and I’m not alone. Every 90 minutes someone is diagnosed with ALS and every 90 minutes someone dies from ALS.

The 2014 Ice Bucket Challenge raised over 100 million dollars for research. Today, promising treatments are sitting in the FDA pipeline. It takes decades and billions of dollars to get an effective treatment approved.

We’ve played nice and we’ve been ignored.

Two years ago, the National ALS Association (ALSA) wrote an FDA Guidance Document that is being lauded as the gold standard of industry guidance. Half of the 14 patients on the guidance committee died waiting for public comments. The FDA just released Its version of ALS Industry Guidance. I, the remaining committee members, and thousands of others will die waiting because the guidance does very little to advance treatments through the lengthy and costly approval process.

The voice, concerns, and suggestions of patients and our allies were largely ignored in the original guidance and our Call to Action was buried in the very last pages of a 139 page document. We had high hopes that the efforts of so many would dramatically impact drug trial design and approval process. Our lives depend on it. Nope. The new and exciting guidance from the FDA Includes: patients with ALS are willing to take greater risks because the condition is terminal. Thank you, Captain Obvious.

I’m waiting to test the California Right to Try law or use the FDA’s Expanded Access Program when a new drug I’ve been following passes Phase 1 safety and tolerability studies. There is no requirement for the company to give me the drug, only a moral imperative. I gladly spent a total of six weeks in the hospital and dozens of appointments in San Francisco. I have great hope that this new molecule will dramatically slow my progression or stop it all together. The trial is still in Phase 1 two years later. Waiting those two years cost me the functional use of my hands and arms, it cost other people their lives.

We are not asking for a safe and effective treatment for erectile dysfunction. We are demanding access to potential life-saving treatments that are stuck in a 15 year, billion dollar approval process. Answering FAQs and minor tweaking don’t come close to the paradigm shift required to save lives today. Stem cell therapies and promising treatments exist but are not accessible.

ACT UP seized the FDA 30 years ago with the same obstacles facing people with HIV/AIDS. It’s time for us to do the same. Most with ALS can’t march or yell because many are paralyzed and can’t speak. But we have assistive technology and 400 pound wheelchairs. Get on board or get out of our way.

Urgent Call to Action

  1. Immediate access to promising treatments that have passed safety studies.
  2. No placebos in clinical trials, use historical controls instead.

Stop protecting us to death. The cost of a military parade could provide life saving treatments to every American living with ALS. US veterans like me are twice as likely to have ALS. It’s time for the US Government to cut through the regulatory red tape of the FDA and provide life-saving treatments now.

What’s Next?

The patient community has the right and responsibility to get loud and demand our voices be heard. We need 1,000 public comments to get the FDA’s attention. You can help by leaving a public comment of your own. Click here.

Tell your story and demand access to treatments and radical changes in how ALS drug trials are designed now! Status Quo = Death.

It’s easy to comment. Here’s how:

  1. Click here to go to the public comment website.
  2. Type your comment. Note: It’s best if you write your own comment, but here are some suggestions on what to include:
    1. Your relationship to ALS (patient, loved one, friend, etc)
    2. A statement about how this guidance document is unacceptable. For example: The proposed guidance document doesn’t adequately address the urgent needs of patients who have a terminal illness – especially an illness without an effective treatment. It is cruel to withhold access to treatments that have been proven safe and show promise, but are stuck in a 15 year, billion dollar approval process. It is time for the FDA to stop protecting ALS patients to death. ALS patients need immediate access to promising treatments that have passed safety studies. ALS clinical trials should NOT require placebos and use historical controls instead.
  3. DO NOT put your name and contact information in the comment as it will become part of the public record. There will be a place later in the process to put this information. It is optional and will not become part of the public record.
  4. Uncheck the checkbox that says: I am submitting on behalf of a third party.
  5. From the drop-down category menu, choose: Individual Consumer
  6. Your comments won’t post until they have been reviewed by the FDA, so don’t be surprised if you see zero comments posted.

Make your public comment and share this far and wide. Thank you.

If you’re having trouble submitting a comment on the above link, try here and click the green button. Note that the 270 comments listed refer to a previous document from 2013.

If our voices are dismissed again, we will show up at their door demand action. Imagine 250 power wheelchairs at the FDA headquarters. Here’s how ACT UP did it 30 years ago.

***

Learn more about ALS

Let me know if there’s anything you need!

This is for people who are going through a difficult time and could use the help of your community or for people who know someone who is.

First, let me talk to the people who are going through a life changing crisis. I get it. I have ALS, a fatal neurodegenerative disease that has turned my life upside down. I’m a proud woman, my husband and I have done everything on our own. We don’t need help. Have you told yourself a similar story? I don’t want to bother anyone, we’re doing okay. I know that story too.

Three words: get over it. Three more words: you need help. Here’s another way to look at it. Remember how good it feels when you help someone else? Well, don’t be a jerk and deny your friends that experience.

Now for the friends who want to help but don’t know what to say or do. The worst thing you can say or do is nothing at all. I know it’s hard. It’s awkward. Here’s a start, call or text your friend and arrange a time to visit and say, “Good to see you!” That’s a better greeting than, “How are you?” Save that for later. If you don’t know what to say, be honest. “This is awkward, I don’t know what to say. But, you’re my friend and I’m here for you.” Love your friend enough to get over your uncomfortable self.

With all good intentions you may say, “Let me know if there’s anything you need.” I know you mean it. I’ve said it too. But the problem is, it puts the responsibility on the person to come up with something. And, it’s difficult to accept help so you probably won’t get the text asking for it.

The Practical Stuff
Everyone and every situation are different. A person recovering from chemotherapy has different needs than a person who has lost a loved one. Yet, some of of the social and household needs are universal.

Social Needs

  1. Text, send a card, or call. Let him or her know you are thinking about them. Feeling forgotten or isolated is awful.
  2. Arrange a visit. You don’t have to stay long. Watch for cues. If she’s falling asleep, take the hint. If he’s not feeling well, don’t take it personally. The important thing is that you showed up.
  3. Keep texting, stay in contact. Even if you don’t get a response, stay connected.

Household Needs

  1. When you stop by for a visit, take a look around. Is the yard a mess? Tell him you’ll be there Saturday morning with a yard crew. If it’s a prolonged issue, rotate with some buddies and take care of the lawn for a few months.
  2. Visiting for a few hours? Check the laundry basket. Tell him you’ve got time to wash, dry and fold a few loads.
  3. Bathrooms gross? Grab the cleaner and clean it. Bring a friend and clean the whole house.
  4. Food, everyone appreciates food. Be the point person and email coworkers and friends, share preferences and restrictions. Bring freezer-friendly meals with the appropriate number of servings in disposal containers. Label the lid with what’s inside and the date.
  5. Don’t forget the spouse, they are carrying a huge burden. Get them a gift card for their favorite activity and offer to stay while they go out. For example, my husband loves to golf, but feels guilty leaving me alone. So, you can come hang out with me while the guys go Top Golf. It’s a win-win.
  6. Are the kids going bonkers? Take them to ice cream or a movie. Dog getting ignored? Take her to the dog park. Notice the dog food is running low? Pick up a bag.  

Personal Care. I can only speak for myself on this one. Well, because it’s personal. You will know what your close friend needs.

  1. Arrange for a pedicure. If you’re friend can’t leave the house, bring the pedicure to her.
  2. Pluck her unibrow or Nair her legs.
  3. If you’re a natural caregiver, learn the morning and/or evening care routines and take over for a day.

I can’t speak for everyone in need. For me, it’s hard to ask for or accept help. But, I know I need it. I’m probably not going to ask, so just do it.

What should you do to help a family who needs a hand?  Consider what you like to do — cook, pray, fix things, sit and visit? Do something you enjoy and it will be a natural extension of yourself. The most important things are to do something and find a way to stay connected.

I’m Forgiven and Free and grateful I have friends who show up and help me.

Life or Death

Living with ALS presents challenges and choices, ranging from how to safely get through a morning routine to deciding whether to live with mechanical ventilation or die. Shakespeare was right; To be or not to be, that is the question.

I’ve been weighing the pros and cons of getting trached, that is to get a tracheostomy and use invasive ventilation to breathe for me when my diaphragm and intercostal muscles grow too weak.  I haven’t decided what I’m going to do when that time comes, but I think about it more than I care to admit. 

Pros: stay alive, see my grandkids grow up, continue to enjoy my family and friends.

Cons: 24 hour carE, painful transition to a new normal, greater burden on my family.

People with ALS in the U.S., who are not veterans, also must contend with exorbitant medical costs. In countries with universal health care, prohibitive cost is not typically a factor. For example, In the U.S., five percent of people with ALS choose to extend life with a trach; In Japan, where they have universal health coverage, 80 to 90 percent of people get a trach. Let that sink in.

Yes, I have personal knowledge of friends with ALS who have chosen to die because their families could not afford the cost of keeping them alive. Others chose not to extend their lives because the are tired of suffering which is completely understandable. No judgment about that here. My point being, it is unconscionable that we, one of the richest countries, don’t adequately take care of our children and people who are elderly or disabled.  Downright shameful.  I didn’t realize the magnitude or consequence until I was one of them. 

To live or not to live. That begs the question, what defines being alive? Heart beating, breathing, communicating, walking, working, playing? It’s relative.

Let’s switch it up a little. What makes you feel alive? What’s your purpose? What brings you joy? My answers are changing, paring down, as I lose physical function. Peeling back the layers, I’m left with what’s truly important. Family and friends, loving, encouraging, supporting in good times and bad, that’s what makes my life worth living. I want to make a difference. 

Are you living? I  mean living, not existing. Get excited, set a big, hairy, audacious goal and make it happen. Volunteer. Bless one another. Get busy living the one life you have.

I’m Forgiven and Free and living the life given to me

Checking In

Unpublished blog posts sit abandoned in my draft folder. One is bitter;  Another begs victim hood. That is not what I want to put out into the universe. So here I sit, gazing at my keyboard, trying again. I’ll just give it to you straight.

Physically
The functional use of my arms is gone. That means I can still use my arms to knock things off the counter, but that’s about it. If we meet for lunch, you’ll have to feed me. Don’t worry about the mess. I’ll have a color coordinated bib, with a convenient Velcro closure,  neatly stowed in my pee bag.

The real bummer is that my progression has reached my mouth and throat. The changes aren’t noticeable unless you live with me. But the signs are unmistakable — excess saliva, choking on air, hoarse, reduced voice volume, muscle spasms in my throat and neck. And when I’m tired, I sound like #45 with dry mouth, “God bless the unitshed shates of amershith.” I have an appointment at the multidisciplinary ALS clinic next week and will meet with the speech the pulmonary therapists. I had been hoping for an effective treatment before I reached this point, but it is not meant to be.

Emotionally 
I’ve been struggling.  My emotional bandwidth isn’t there as I’ve switched from waterproof mascara to no mascara at all. Two local friends with ALS died this week. Tammy was the second woman I’d met with ALS. I was drawn to her gentle spirit, strength, and endless optimism. JT had unmatched charisma and charm, and a wicked sense of humor. Both were deeply loved by family and friends. Coping with my own loss and sadness for Tammy’s and JT’s families is overwhelming.

Spiritually 
I’m at peace with my maker yet miss being part of a faith community. I’ll add this to my New Year to do list.

Return to Gratitude
There’s a time to grieve and a time to live. I do both with profound gratitude and peace in my bones.

What are you grateful for today?

I’m Forgiven and Free and grateful I get to try a recently approved medication that may slow my progression!

radicavapic

Losing My Religion 

I was sprinkled a Methodist, confirmed a First Congregational, dunked an evangelical, and spent years in between with the Presbyterians and non-denominational folks. My life-long Christian tradition provided encouragement, comfort, community and opportunities to serve others. For this, I’m grateful.

I have my own relationship with God and my faith is intact. No worries there.  But I can no longer align myself with the American version of Christianity.  I haven’t been to church since Trump won the electoral college vote last November. I felt like an alien worshipping next to people who promoted Trump as God’s answer for our country.  Fast forward 10 months and the divide is even greater.

I am in no way condemning Christians who chose to remain in the American Christian Faith tradition. Nor, am I condemning pastors and others who have dedicated their lives to Christian service.  There are churches and individual Christians who do not subscribe to these superior, nationalist beliefs.  You do you, keep the faith and keep up the good works. Much good is accomplished.

I will continue to do the same in a community that doesn’t have national evangelical, baptist, and non-denominational leadership (you can google the list) unilaterally supporting a president who the antithesis of the Christ I know and love.

Wrestling with this has caused me to grieve and feel physically ill. I feel ripped-off.  So why am I making this a public declaration? Isn’t religion a private thing? I’ll tell you why:

Trump’s administration and the American Christian leadership’s support of Trump have marginalized people who are dear to me. I want my friends who are transgender, gay, lesbian, disabled, Muslim, female, Mexican, veteran, immigrant (documented or not), Jewish, indigenous, African American, and liberal to know that you matter. I cannot belong to a faith community that believes American, white, straight, male, republican, christians are superior to the rest of the world and come “first.”

I’m not asking you to support my view of Trump and American Evangelical Christian leadership. It’s my assessment just as you have yours. Just know that I can no longer align myself with Americhristianity.

My faith is solid but I’ve lost my religion and faith community.

I’m Still Forgiven and Free

This is Harder Than I Expected

I’ve been on this ALS journey for nearly five years.  That alone makes me one of the lucky ones as half of those diagnosed die within two years. And, thanks to the VA, I have access to the equipment and medical care I need to live the safest and most engaged life possible.  I also have a caring family and supportive friends that love me–priceless.

I don’t want to complain or sound ungrateful, but holy moly it’s getting hard to make sense of it all.  I don’t recognize my strange looking limbs and I feel betrayed by my body.  I’m still able to talk, eat, and breathe; imagine the betrayal that lies ahead.

My Facebook page is full of grand  kids, travel, ball games, concerts, and friends.  All of it is true.  I refer back to the blessings of my family and friends. What you don’t see is the two hour routine it takes to get me ready in the morning and the one hour routine to get me into bed at night. You don’t see Steve spending 30 minutes trying to make me comfortable or changing my catheter, or helping me in the bathroom. It’s never pretty. Steve is the hero in this story.

You probably haven’t seen me try to scratch my eyebrows.  I drop my head and lift my shaking hand. Then I turn my head from side to side rubbing my eyebrow over my finger.  No big deal really.  It’s just an example of how deliberately I have to consider the simplest of tasks.

I’m no longer driving.  I made the decision to stop before I got into an accident. I’m no longer teaching.  I had to prioritize how I want to spend my limited energy. I simply cannot muster the energy I need to provide the quality of teaching the students deserve.  Truth is I wanted to make the decision proactively rather than have someone tell me I have to quit.  It’s a strategy I employ to give me the illusion I have some control over my life.

The biggest challenge remains between my ears.  I have moments when feel sorry for myself and give up. I struggle with asking for help outside of my family.  I know it’s my stubborn pride. It’s as if asking for help solidifies the fact I’ve lost my physical independence.  Duh.  Thank you Captain Obvious.

It’s a process.  I’m learning it takes me some time to adjust to each loss and that eventually everything will be okay. Take feeding myself for example.  In restaurants I adjusted what I ordered to eat based on what I could get in my pie hole. Chicken tenders and french fries were my only option.  Hold the ranch dressing please.  My social circle shrank because I was too stubborn to have someone feed me in public. Guess what? Steve fed me salad at Jack’s last week and not a single person cared. If anything, people probably thought it was sweet how compassionately Steve cares for me.

So where do I go from here? It’s the same story I’ve been telling myself for the last five years: grieve, accept, adjust and adapt.  Return to gratitude ASAP.  The less I focus on my limitations, the more I can focus on my abilities and who and what really matters.

  • grieve
  • accept
  • adjust
  • adapt
  • return to gratitude
  • repeat

it’s not always a linear process; Grief returns in unexpected ways and yet we persevere. I’ve been stuck in grief for too long so I’m moving on.

I don’t corner the market on struggles or grief. What’s been upsetting you lately? I encourage you to grieve and find a way to persevere.

Lyrics from my favorite artist, Nahko, help me keep my head on straight:

Don’t waste your hate, rather gather and create.  Be of service, be a sensible person. Use your words and don’t be nervous. You can do this, you’ve got purpose. Find your medicine and use it. 

You can do this, you’ve got purpose. Find your medicine and use it.

I’m  forgiven and Free and typed this whole thing without using a finger!  

The Little Things 


It felt like God gave me a gentle kiss on the forehead.

This morning I was waiting for the ALS Advocacy conference to begin and in walked Chrissie, my sister from another mister. We embraced for a moment longer than last year as we silently acknowledged that Karen wasn’t with us

Then Chrissie exclaims, “I have something for you!” and hands me a tiny pillow. “This was Karen’s and I want you to have it.” 


Karen found comfort by resting her motionless hands on this soft pillow that Chrissie made for her. I took one look at the pillow and knew God  was in this. 


The anchor on the pillow is identical to the anchor on my recent foot tattoo. Coincidence? I don’t think so. 

I knew seeing my Delaney sisters for the first time since Karen’s passing was going to bring a host of emotions. What I wasn’t expecting was God showing up in something so little, yet so huge. 

God shows up in the little things to bring us comfort and peace. Be on the look out for the big gifts that Show up in small packages. 

I’m Forgiven and Free and thanking God for the little things

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