I am Robert Bradford

My name is Robert P. Bradford. I am 68 years old. I served in the Navy during the Vietnam Era on the USS Worden as a hull technician. My wife, Connie Bradford, is relaying my story because I can no longer use my left hand and my right hand has become very weak, and I can barely speak.

My ALS journey began in May, 2022. I am a retired carpenter, I work with my hands. I began noticing that I wasn’t able to hold onto screws and using power tools was becoming more difficult. I sought medical help. I was initially referred to a orthopedic doctor who couldn’t find any spinal/nerve impingement. A nerve conduction study showed carpel tunnel in both hands and I had surgery for that condition in August, 2022. My symptoms didn’t improve. I began losing my balance in September.

I was referred to a neurologist who ‘had a clue’. More tests including MRI’s, bloodwork, EMG’s and a spinal tap were done. Then, on February 23, 2023, I received the diagnosis. I had ALS. Genetic testing revealed that I carried the C09orf72 gene. My ALS was hereditary (or familial). That was soul crushing. It means that my children and grandchildren have a 50/50 chance of contracting ALS.

It is now August. ALS is attacking with a vengeance. My left arm/hand are paralyzed. My right arm/hand are starting to follow suit. My legs are getting weaker. I use a cane, but I can’t walk very far and recently got a power wheelchair.

I also have ‘bulbar’ involvement. This means that ALS has hit the muscles in my mouth, tongue and throat. I am on a feeding tube as a result and no longer eat or drink by mouth. My speech is quickly deteriorating. I am on Non Invasive Ventilation at night. I have a cough assist machine as well as a suction machine to pull mucous out of my throat so I don’t aspirate said mucous into my lungs. I rely on my wife/caregiver to provide daily living activities like getting dressed, taking care of personal hygiene, scheduling appointments, driving me to those appointments, setting up my tube feedings, etc. We are retired, but ALS has cut our retirement dreams short.

The VA has provided so much support. Veterans are twice as likely as the general population to get ALS. Their grants helped get us a converted van, a power wheelchair, ramps, equipment, medications, and feeding supplies. They recently installed a ceiling lift in the bedroom to help with bed to chair transfer. We also received a Hoyer lift. The VA provided a TOBII/Dynavox machine to assist with speech through eye gaze technology.

We received a grant to adapt our bathroom to make it ADA accessible. We used VA grant funding to get a whole house generator because if the electricity goes out, (and it has recently), I’m at risk of losing life saving technology that supports me. The grants are literally life savers, but we still had to come up with money for expenses over and above the grant funding.

Now, think about all the ways ALS has hit me. In only SIX MONTHS time. And the support I need to keep going. Our friend likened it to “drinking from a fire hose”.

We are so grateful to the VA for all the help and support. But we feel for those ALS victims who do not have that support. The emotional burden is tough enough. To be saddled with mounting medical and equipment expenses, even with insurance, just adds salt to the wound.
We have the support of family and friends which means the world to us. We advocate for ALS research funding. There are promising breakthroughs in the area of genetics, but it takes time and funding. I won’t live to see the benefits that will come about from this research, but others will. Others like my children and grandchildren.