Friday, July 15, 2016

Duct tape

     A week ago I went in for my three month Dr appointment, these appointments could be monthly but after I describe an ALS clinic you'll understand why I don't go every month. Clinic starts the same as any appointment, nurse checks your blood pressure, asks you about allergies and where your local pharmacy is located, you know, the basics. That's where basics end. Now it's time to run the gambit. Dietitians, speech therapists, social workers, breathing coordinators, occupational therapists, wheelchair technicians, and your neurologist are all coming your way. Don't get me wrong, I'm blessed to have them all at my fingertips in one location, most people with ALS aren't so lucky, but it sure as shit is intimidating.
     All of these professionals sit with you and run tests, ask questions and discuss what you can and can't do anymore. Unfortunately for us with ALS, the can no longer do list always increases while the can do list gets shorter. Medical professionals have the challenge of fixing people when they are broken. However with ALS, because there isn't a treatment or cure, they are left with very few tools for a monumental job and they know it. I feel at times like an airplane they're trying to keep in the air when the wings snap or they lose an engine, with duct tape. They aren't giving up on you but they also aren't going to be able to keep the plane fly worthy for long.
     This is where you as a patient start making some tough decisions. Do you want to be covered in duct tape? A little duct tape might be okay, maybe? Try a c-pap machine while you sleep, maybe a new steering column on the wheelchair, maybe cutout French bread from the diet to avoid choking, these appointments turn into giant brainstorming sessions to try and fix you, while knowing the inevitable isn't promising. For three hours you have to actually acknowledge you have a terminal illness and decide how much duct tape you are comfortable trying. I usually leave these appointments pissed, wanting a stiff drink. The Grace catches up to me later. I remember that I have hundreds of people looking out for me, I can still blare music, drink beer, speak, write, and love. The Grace still outweigh the "can'ts." Bring it on duct tape.



9 comments:

  1. I've never had the honor of meeting you but I first learned about you on the news when they were talking about your retirement. That story touched my heart and I went to bed that night humbled, inspired and in all honesty, in tears. I want to thank you for continuing to share your experiences with the world. I think you probably know you are changing lives but Im positive you have no idea the magnitude. You may not know me but I pray for your strength every single night.

    ReplyDelete
    Replies
    1. Thank you for the kind words and prayers. Having a Gronk's Grace Army is what keeps me going.

      Delete
  2. I love your attitude and your understanding of what is happening and why. Your are a inspiration to others out there going through the same thing,

    ReplyDelete
  3. I was introduced to your story by my brother in law and sister in law (Lance & Gina) and I just wanted to reach out and thank you for sharing your journey. It's an honor to read your words and follow your story. Your attitude is inspiring. You and your family are in my prayers. -Becca Tuula

    ReplyDelete
  4. Thanks for the stories! If you run out of duct tape let me know - I will send you as much as you need ;-). Keep fighting you are in my thoughts and prayers.

    ReplyDelete
  5. I just want to share my story so i can reach out to others. My mom was diagnosed with ALS (Lou gehrig's disease) in the summer of 2013. She is my best friend and all i have got in this world. And I was scared because when the doctor told me about how deadly this disease is i could not help but cry. She suffered all through the time, she could no longer walk as all her bones were weak, speak or even eat, this were years of torment as i have never seen anything like it or ever been so scared in my life and i wept as the days go by. We tried several drugs like Riluzole, and various therapy that was prescribed by the doctor but it came out even worse as she became very thin. She is 65 years old. I actually thought i was going to loose her after all i have spent. I was in church one day when a fellow in the christian faith told me about a doctor who has a cure and that this doctor had cured a colleague she knew suffered from ALS, i was in shock and recalled the doctor once told me there was no cure, she gave me the doctor's contact and i contacted him and told him all we have been through and he told me about his very effective herbal medicine that treats it permanently, though at that time i did not believe but i wanted my mom to be okay again so i decided to give a try and he sent me the medicine which i gave her as instructed by the doctor. In a month time i was amazed at the improvement and by the second month she was completely okay, during all these times she did not experience any side effects. To confirm all these we went back to the doctor to confirm, he ran all the tests and found no trace of ALS in her again. Today my mom can run, jog, eat and speak fine without any assistance currently she is baby sitting my daughter and till now she is still very strong. If you are suffering from ALS (Lou gehrig's disease) do not die in silence because there is still hope for you. Contact the doctor on (josephalberteo@gmail.com) i am very sure he can help you too.

    ReplyDelete
  6. I have been following this blog for a while now and i decided to share my story on how i survived and got a cure from ALS which would have maybe by now killed me. I was diagnosed with ALS in 2013 and it came with symptoms like overall weakness and i could not swallow and i ended up in a wheelchair though my doctor tried to put me on occupational therapy and physiotherapy but none seemed to give a relief as my condition grew worse in 6 months. I was lucky to have contacted Dr. Joseph and used his herbal medicine that treated me and gave me life, just 3 months of using the medicine which spans for 6 months positive improvements were visible, like my speech, all movements. A few years have gone by and i am still very much alive and healthy. Do not give up, you too can get a cure you can contact him directly on the contact below (josephalberteo @ gmail. com) for advise and effective solution. I pray you get cured soon.

    ReplyDelete