Welcome to my CaringBridge website. I will be keeping family and friends updated in this one place.
I was given a diagnosis of ALS (also known as Lou Gehrig's disease) at the end of June this year (2020), although I have had symptoms since the fall of 2018. ALS is very hard to diagnosis because you must eliminate all other things first. The average time for diagnosis is one year. ALS is a progressive motor neuron disease. The motor neurons die and are no longer able to communicate with your voluntary muscles which eventually causes paralysis. Everyone's progression with ALS is different and there is no way to predict the course of the disease. It is a terminal diagnosis and the majority of people die by year 3. Although ALS only affects about 120 people in the Cincinnati area, the disease is devastating for the patient and families. A patient will eventually be unable to speak, swallow, walk, and will become completely paralyzed. At that point, communication is done through an eye gaze recognition device.
I have bulbar type ALS which means my speech was affected first. Currently, I have trouble speaking but still can be understood. Eventually, I will lose my ability to speak. The ALS has started to move into my limbs, specifically my left arm and leg. I use a walker at home and a scooter to get out and about.
We have been living in the Belvedere condo building for a year which is 100% handicapped accessible and that is such a blessing. We live about a block and half from Will and Reg's families so I can scooter down there to see them. I have many visits and help from my other children and their families as well. So far my progression has been slow and we are managing quite nicely.
Tara has set up this CaringBridge account for me where you can find updates and ways to help. Please check back often as our needs will change as the disease progresses. We will be posting needs on the CaringBridge Planner as they arise.
There is no treatment or cure for ALS. Part of the reason for this is it is extremely rare and only affects 1 in 60,000 people. Therefore developing a drug for such a small group of people is not profitable. A significant portion of the money coming in for research is from friends and family, remember the Ice Bucket Challenge? If you are able to help financially, please donate to the ALS association.https://tinyurl.com/alsorg
God is in control and I am depending on His strength for this journey. We appreciate your prayers, support, and words of encouragement.