The Bucket List

Hi everyone,

Everyone has a list of things they want to do or achieve in their lifetime. This is what is known as a "bucket list". About a month ago, a young man by the name of Declan, passed away from complications caused by Duchenne Muscular Dystrophy. Dec and his mom, Alexandra, had a YouTube channel that I recently subscribed to and started watching their videos. The channel is called Decs Rolling Bucket List and it documented their completing of the activities on that list like travel destinations and meeting his favorite YouTuber among other things. Declan had a similar outlook as I do, where he made a decision to live his life to the fullest despite the illness. I found out he passed a few days after and I recently watched the Eulogy given by his best friend, his wonderful mom. Alex plans on continuing to fulfill Declans bucket list. I'm so sorry your loss Alex… It looks like the two of you had a similar relationship as my mom and I. Remember that he will always be with you in spirit and memory. May he rest in nothing but the sweetest of peace fellow Duchenne Warrior.




As you know I myself suffer from Duchenne Muscular Dystrophy. I was diagnosed in 1983 at the age of two and given a life expectancy of 18 to 23. Somehow I'm going to be 42 in a month. While I am doing very stable and healthy and don't plan on going anywhere soon, I still have a merciless terminal illness and I don't know what the future holds. There are still a lot of things I would like to do in this life that I hope to accomplish. I fully intend to live my life to the fullest as well. Honestly, none of us really know when our times up regardless of health or illness. I think we all should work on a bucket list and try to do as much as we can. We only live once. I'm going to include my bucket list below. My mom and I plan on getting out to do things as long as I can. So here we go.



Finding love! Either a girlfriend or female companion is at the top.
Make inter-abled relationships common.
Get my Muscular Dystrophy shaving cream challenge to go viral.
Get some big celebrities to do the MDA shaving cream challenge.
Find someone to do holiday themed MDA challenge videos again with.
Get my MDA shaving cream challenge on the news channels.
Get all the reporters and anchors from all New England news channels to do the MDA shaving cream challenge.
Get more of you on my Facebook to do my MDA shaving cream challenge(Ask me about it!).
Get more people to do my sensory therapy activity/challenge with your feet(Just ask lol. It's fun!).
Invite more of my former classmates over.
Drive across Canada.
Visit Vancouver.
Visit the Pacific Northwest of the United States.
Visit Yellowstone(couldn't get in last year).
Visit other National Parks in the United States and Canada.
Visit the Mall of America.
Visit San Diego Zoo again.
Visit the north side of the Grand Canyon.
Visit the 9-11 museum in NYC.
Visit the crater in Arizona.
Visit Central Park in NYC.
Go on another cruise.
Get a dog.
Get new rims for the van.
Meet my friend Jasmine in Canada(she's a artist and lead vocalist for Polarity).
Meet more celebrities. Actors, Actresses, and Musicians
Be an extra in an Alien film or one of the Walking Dead spinoffs(as a zombie because I probably wouldn't survive long in an apocalypse environment).
Feel sand and mud again. Its been a long time since I walked and for people like me who have lost the use of their legs you'd be surprised at how much we miss the ground under our feet. It's the biggest reason why my friend and I started the sensory activity.
Win a powerball jackpot
Get the cat to sit on my lap for once… Pepper you're an asshole!
Get a tattoo. That can't happen now though I'm on a blood thinner.





I guess that's it for now. A lot of these are going to be hard to accomplish because of the amount of travel involved and handicapped accessibility. I mentioned my challenge a lot lol. I just don't have anyone to do it with currently. I'll probably be adding more over time if I think of anything else.

Footprints in Mashed Potatoes: Sensory Therapy for your feet👣

Hi everyone,

I want to share a fun sensory therapy activity I've been exploring since 2019. It involves putting your feet into different substances, similar to "sensory walks" done in some preschools. This idea stemmed from my shaving cream challenge, and my Occupational Therapist thinks it's great.

 

How to do it:
Fill a tub or aluminum pan with your chosen substance - it can be food-related or inedible like shaving cream, slime, mud, or spa gel. The most important safety rule is to always sit in a chair while doing this activity. This is crucial to prevent slipping, as some substances can be very slippery. Sitting ensures you stay safe while enjoying the experience.

Once seated, remove your shoes and socks, and immerse your feet in the substance. Describe the sensation you feel. I recommend trying various textures for a diverse experience. If indoors, have a towel and water tub ready; if outdoors, choose a warm day with access to a hose. We've used pancake mix, mashed potatoes, cool whip, jello, pudding, marshmallow fluff, mud, slime, shaving cream, and spa gel for jelly pedicures. Feel free to use whatever you prefer, but always prioritize safety.

Purpose and benefits:
This activity serves as sensory therapy, stimulating the sensitive nerves in your feet. It can improve circulation and sensation, especially with warm substances. Benefits include reducing pain, inflammation, stress, and improving sleep. It's particularly helpful for those with damaged foot nerves or autism, but anyone can benefit. It's like a spa treatment or massage, potentially great for skin health too.

Personal experience and mental health aspects:
After surgery on my feet when I was a teenager, some nerves in the soles of my feet were damaged. This left them extremely sensitive to touch, yet paradoxically numbed them to where I couldn't feel soft or squishy sensations on the bottom of my feet. This therapy has been instrumental in helping restore more normal sensation. Recently, I began seeing a mental health counselor for depression. They enthusiastically support this activity, urging me to involve others. It's important for my happiness and mental health, and it benefits those who participate too. Research shows it's particularly calming for individuals with anxiety and ADHD.

Initially, I started this activity with my best friend Kayla. Doing this with her was extremely important to me, and I was so happy to share the experience. She enjoyed it too, which made it even more special. Unfortunately, we had to stop because her partner at the time was uncomfortable with it and refused to understand or tolerate her doing it. This made me feel like I was doing something wrong, like I was a freak. The whole experience left me feeling hurt and misunderstood. It made me hesitant to continue or ask others, fearing they might react similarly.

However, I decided to give it another try and was pleasantly surprised by the positive reception. I shared about it on social media, and many people were supportive and eager to try it. This helped me realize that there was nothing wrong with the activity or with me for enjoying it.

Who can participate:
Everyone is welcome, though girls tend to be more receptive than guys. Kids especially love it for the sensory experience and the chance to make a mess. My physical and occupational therapists, as well as teachers and healthcare workers, endorse this as both physical and mental therapy.

In conclusion, this activity has been a source of joy, social connection, and therapeutic benefit for me. The sensation of different substances squishing between your toes is incredibly satisfying and fun. That's actually one of the best parts!. It has the potential to help many others. Please just remember, always sit down to ensure safety, and enjoy exploring these delightful sensations with your feet in a comfortable setting!

Things used so far:

Pudding
Jello
Mud/Fake Mud
Mashed Potatoes
Bisquick Pancake Mix
Marshmallow Fluff
Nutella (gross) (It felt good. It was soft and very thick, but getting it off was
really tough.) 

Spa Gel
Slime
Cool Whip
Shaving Cream
 

Mud and shaving cream combined
Spa Gel and Shaving Cream combined
Mashed potatoes and shaving cream combined
Cool Whip and Shaving Cream combined
Nutella and shaving cream combined



Any suggestions?