“Ask Me Anything The Answers ” Chapter 68

I love that I'm still able to still help others.

Just because I am living with ALS and can’t wipe my own ass doesn’t mean I am not capable of still helping. “Ask me anything" is one way I can. Your questions allow me to have open conversations, even from afar, hopefully making you more comfortable with ALS.

For this week, I am answering questions I received over the last couple of weeks. The answers detail my peraonal journey. Yours might be different, nevertheless, I hope my honesty helps.

How do you want people to treat you and what should they say or not say?

Recently I have had multiple friends ask me this same question, and I would ask you to treat me the same as you always have. If we are meeting for the first time, you should do what you would do with anyone else. Don't be scared - you can ask me anything. I have found that this approach allows new guets to relax. If you are visiting someone and they don’t offer you that, then start with hello and I love you. Tell them about your day (no, I don't mean complain about your day) or tell them a funny story. The most important thing for me, though, is to please have patience and give me time to answer any questions or respond. Because I have to use eye gaze technology to answer, it takes me longer to type my response, so give me the time to engage with you. If you ask me multiple questions at once, it makes the conversation very confusing. My eye gaze system allows you to read what I am typing, so don’t try and respond before I am done. Patience is the most important thing when communicating with me. Other than that, just be yourself and enjoy the time together. I understand seeing me in a wheelchair and knowing I have ALS might be hard, but there's no crying in baseball or visiting me. Here is a perfect example. I received this text just the other day:

What is the hardest emotion to deal with as you travel this path?

Wow, great question. I would have to say that the loneliness and feeling left out/behind us the hardest part. I am surrounded by my very loving and caring family every day, but it can be very lonely to be stuck in your thoughts or contribute to an ongoing conversation when you can’t speak verbally. I just want to have Laura tell me again that "sometimes I think you talk just to hear yourself talk." Participating in conversations with a group is very difficult when you have to write everything out. By the time I am done typing my response, the conversation has usually changed so I just hit delete. I can't even tell bad dad jokes anymore because the Tobi just doesn't verbalize them right.

Knowing what you know now about ALS and how long it took to diagnosis, what advice would you give to people trying to explain their symptoms to their doctor?  I noticed that it takes a long time for most any doctor to come up with a diagnosis.  How did you finally get heard?

Unfortunately, because there is not a single test to determine ALS and the low number of cases doctors see, doctors have to pretty much rule everything else out first. I did not know what ALS was when a neurologist said the words to me, and that was 9 months after reporting my first symptoms. Before getting to that step, I was seeing a general practitioner who was doing different tests trying to determine why my tongue wouldn’t stop twitching. By the time I got to the third neurologist - the one who finally confirmed I did in fact have ALS - 13 months had passed. Believe it or not, this was a pretty fast process compared to what I’ve heard from other PALS. I have a friend who did not get diagnosised for FOUR years. Unless you have experience with ALS before and have some ideas of what to look for, or have a doctor who has diagnosed it before, starting from scratch can take a long time. My persistence going to different doctors was key to getting my answer. This is one of the very reasons I write my blog. I pray I help teach others about ALS.

Do you have moments where you wish it was over? Are you in pain?  How do you cope with the emotional pain, how do you find the will and strength to go on?

I find my strength in God.

“I have been crucified with Christ and I no longer live, but Christ lives in me. The life I now live in the body, I live by faith in the Son of God, who loved me and gave himself for me.” Galatians 2-20

I will say that when I was first diagnosed with ALS I was angry and scared. Then I prayed - and continued to do so everyday - and found my peace. More specifically, I found the kind of peace that comes over you when you know you have a terminal disease. You no longer worry about the unknown and stress you experienced before diagnosis. I enjoy each day and know that I had a full life. I wake up everyday thankful, and know I am one day closer to being healed in either the natural or spiritual self. Your mind and attitude controls everything, and giving into the negative never helps. With God, nothing is impossible, and hope always exists.

"For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.”

—John 3:16

How are you coping with leaving your children, and how are they doing?

I have spent their lifetimes showing them my love, and I will spend my next life watching over them, whenever it comes. I have asked each of my kids how they feel, and I continue to have open conversations with them on anything they want to ask. I think it would be harder for me to be healthy and die suddenly than to never be able to answer their questions at all. I also think all of you should do the same.

When my mom was aging, I tried to have open conversations with her. There were some topics she refused to discuss and I decided I wouldn't do that to my family. "Ask me anything" for my friends and blog readers is in the same spirit.

With technology continuing to evolve to assist those with ALS, Eye Tracking Technology for example, what do you think would be a great device or piece of technology to help with the comforts of living with ALS that has not been discovered yet?

I would create a device to communicate using my brain. Connect it like cochlear implants that would connect to an external speaker allowing PALS and other non verbal people to speak. There would also be the ability to sensor what is said, because not everything thought should be spoken out loud. hahaha Because it was too late for me to use voice banking, I would also create an AI program that can use previously recorded videos to create my voice for eye gaze and text to type programs. I would create something to stimulate nerve growth faster. I don't have a clue about how to go about building any of those though, so if one of you have the ability, I only want 10% for my creative genius.

What advice would you give to a family/friend of a loved one who is living with ALS who has just become unable to communicate with them ?

Throughout my journey, I can say that I've never lost my ability to communicate. I've just had to adapt and learn new ways to do it. When I first started to lose my ability to communicate clearly, I would use my cell phone and a text to talk app. I added a Bluetooth speaker to assist with volume. As I lost my ability to type, we developed hand and eye signals, but that doesn’t help people outside your circle of care. There are several companies that offer eye gaze technology, and this is how I now communicate both verbally and in writing. In fact, I write each and every even my blog post this way.

I have always been extremely claustrophobic to the extent that air travel is difficult and MRIs are impossible without total anesthesia. I’m terrified about the possibility of not being able to move my limbs, or to be permanently bedridden unable to move but with my mind active. Your thoughts?

I am claustrophobic as well. It took two failed attempts to get an adequate MRI done, and we were only successful the third time when I was under general anesthesia. A huge fear of mine is not being able to breathe and having things placed around my neck. As I gradually lost my function to breathe, I had to get a tracheotomy. This procedure resulted in a tight strap around my neck 24/7, and I fought my wife everyday to keep the strap loose enough so that I could tolerate it. I eventually got used the feeling, but I still fuss even though I know I need it to breathe. The last thing I can share is that I pray and meditate when I get anxious. Panicking never helps anything, buy when I find a thing to focus on, I can calm my mind and body. Maybe my Lamas training is finally helping. If this doesn’t work for you, maybe you need to consider medication, and I know that some PALS benefit from the use of medical marijuana. Additionally, there is no reason to be stuck in bed. I am moved to my wheelchair everyday and with the eye gaze, I can even drive myself.

This picture shows the strap around my neck.

It’s a new challenge for both the person affected by ALS and their family/friends. What advice do you give to others that will help them overcome any challenges? Are there support circles that may be available to them?

Thinking about this question, I looked back at my first posts (including “I Have ALS Now What"), and 68 posts later, I still agree that finding a mentor is one of the most important things. However, I have since learned that you really need three. A spiritual mentor, an ALS mentor, and a financial/legal mentor. I would also suggest you don’t use Google to be your own doctor or join every ALS Facebook group. Those tactics can lead you down a very dark path. Find people and sites that lift you up PALS /CALS need to stay positive through the journey. You can find great resources on ALS.org, IAMALS.org and HealingALS.org to name a few. I know a great blog if you are looking for one.

If you still have the ability to speak clearly, contact Team Gleason to record your voice and bank it with them to be used with the eye gaze program(s) later.

Because ALS affects very few people we have to teach others. Having honest conversations through blogs, social media, networking and other means we can one day get a diagnosis faster, have more technology in our daily lives, hear our voices again and hopefully find a cure. Until then, I will continue my journey sharing my story to everyone I know and ask you to share it too. It's also very important for me to have God in my life and stay positive. I have no room for negativity in form in my life and stay away from sites and people who radiate it.

The last thing I want to say is that if you are a PALS, CALS, friend or loved one, hang on tight and be ready for a long ride.

Love and Blessings