5 Hawkings = reported, published evidence of strong effectiveness with treating ailments or slowing down the spread of symptoms.
4 Hawkings = reported, published evidence of moderate effectiveness with treating ailments or slowing down the spread of symptoms.
3 Hawkings = non-published evidence with treating ailments or slowing down the spread of symptoms.
3* Hawkings = conflicted reports of effectiveness evidence with treating ailments or slowing down the spread of symptoms.
2 Hawkings = reported, published evidence of non-effectiveness with treating ailments or slowing down the spread of symptoms.
1 Hawkings = no proven effectiveness/damaging to ALS
Cleveland Clinic's ALS floor
Dr. Erik Pioro Director, Section of ALS & Related Disorders at Cleveland Clinic 9500 Euclid Ave #S90, Cleveland, OH 44195 (216) 445-2988
As of 2019, Cleveland Clinic officially is not supporting medical marijuanan, even though it was cleared for ALS in Ohio. Due to this, doctors may not write prescriptions. That said, they are able to alert their patients to this. While Cleveland Cling phsycicans mention that medical marijuana may help ALS survivors, the ALS Clinic at Cleveland Clinic refused to provide any information on cannabis support for ALS patients. Instead, they pushed muscle relaxers.
In September 2018, they hired a new social worker, but this person only works one day a week. The clinic has no research or support for cures and is only invested in longitudinal studies on dementia (intergenerationally). When Dr. Jerryson was diagnosed with ALS, he was told he was told he had either less than a year to live, five years, or twenty+ years (but when asked about the 20+ years, Dr. Pioro said this scenario was unlikely for Dr. Jerryson). Following this traumatic diagnosis, he suggested for Dr. Jerryson to get in touch with ALS Association for support and was ushered out the door.
While Dr. Erik Pioro is very knowledgeable about ALS and has been at the forefront of evaluating potential cures, he does know have a knowlegable or supportive staff. Quite a few ALS survivors in Northeast Ohio have complained about the Cleveland Clinic ALS Clinic. They are excellent at diagnosis, but very poor in terms of support.
My Journey with ALS
Hello. Thank you for reading my testimonial.
My name is Ernest Federico. My friends call me Ernie. I was born, raised and educated in Youngstown, Ohio.
As of this writing I am a 71 year old male and I've been diagnosed with ALS. I am a retired educator, having taught for more than thirty-five years in early childhood, middle childhood and University settings. I've taught in private and public schools, the local college of education and for the Department of Defense dependent schools in the Philippines and in Germany.
In late October 2017 I felt a pinched nerve in my left shoulder. I discussed it with my primary care doctor. He diagnosed it as ulnar neuropathy since there was tingling down my left arm to my fingers. In early spring of 2018 the condition worsened. When I discussed it again, the doctor diagnosed it as brachial atrophy since we noticed some muscle loss in the left hand.
By the summer of 2018, I noticed I was having trouble swallowing. I talked about it with my family. I didn't do much about it because my sister was dying from pancreatic cancer. In late 2018 I again visited with my primary care doctor and a resident from North Eastern Ohio College of Medicine. I discussed problems with my left arm. While the resident was examining me and looking at my tongue, he mentioned something about swallowing. It was then that I realized that I needed to see a neurologist.
I had my primary care physician send a referral to a neurologist. The neurologist performed a battery of tests. He made a preliminary diagnosis of the beginning of ALS. I went to a second neurologist for further testing and on January fourth of 2019, I was diagnosed with ALS. I had weight loss from 176 pounds to 153 pounds over a few month period. Swallowing became more difficult. I went to an ear nose throat specialist and was referred to the local hospital for swallow testing. I was referred to a speech therapist for speech therapy and swallow lessons.
I was referred to occupational and physical therapy. Before meeting with both I had to do an intake with their supervisors. The occupational therapist worked with my sister and I on suggestions for helping with my upper body strength and adaptive devices.
The physical therapist worked with lower body exercises to improve the strength of my legs. By now I have been diagnosed with a dropped left wrist and a dropped right ankle. I was referred to a specialist to design a hand brace and leg braces. My speech therapist discussed voice banking and recommended that I record 1600 sentences on a program called Model Talker so that I would have my own voice to use with a speech-generating device from the Tobii Dynavox company.
After receiving my diagnosis of ALS, I was given to medication options. There is no cure for ALS, but there are two treatment options. The first was Rilutek, also called Riluzole. It is a medication that's been around since the 90s. It is one small tablet taken every 12 hours. The second option was Radicava, introduced in 2017. It is an infusion medication that requires a peg or a port. Being a cancer survivor having gone under fort-three chemotherapies, I elected to go with Rilutek. It is helped to slow the progression somewhat. The fasciculations have lessened but I continue to have weight loss. I am still able to walk without assistance but I continue to have atrophy (muscle loss), pain in my neck and shoulders, and a loss of strength in my hands and arms. My fine motor skills have-diminished.
Along with the neurologist I see a pulmonologist. Under his care I use a device called, "The Vest". It helps clear the mucus from my lungs. I use a nebulizer to help clear my airways and lungs and a BiPAP machine for breathing at night. I now require the assistance of a home health aide to assist with my treatments, food preparation, bathing and help around the house. I utilize services from palliative care. I have a social worker and a nurse practitioner that come to the house once a month each. I continue to see the neurologist, the pulmonologist, and my cardiologist every two months. I no longer drive and I'm dependent on my caregiver to take me to all my appointments.
I want to express my gratitude to all my caring medical professionals, their support staffs and the various agencies that have helped me along my journey. I also want to thank my sister, Diane, and my loving friends and family for their dedication, compassion, love and understanding. I continue to have clarity of mind, a peaceful presence with the help of a good spiritual connection. I attend the local ALS support group where there are loving, caring people who have and are traveling the same journey. We share our experiences, our strength and Hope. It is comforting to know that I am not alone on this journey to a happy destiny.
For over 150 years, the medical field has struggled to identify the causes of ALS. While there are many agencies and international companies promoting products like Riluzole and Radicava, what has been mostly absent has been collective ALS survivors’ feedback on these products.
Did you have a great experience with a product or a physician (or caregiver)? If so, please provide a testimonial to let others know.
Did you have had a bad experience? Did your physician treat you poorly, did their questions traumatize you? Did the medicine they give you provide you with problems (such as Riluzole, which can elevate people’s liver enzymes)?
All testimonials received, require a name and email address to verify the accuracy of the reporting, but we will keep your name confidential on the website to preserve your anonymity.
Thank you for your help to improve the awareness and knowledge of what helps ALS survivors.