The Reality of ALS
Dear Friends & Family,
The crazy thing about ALS is that you really don’t have many appointments with the doctor. Once Curt was diagnosed his doctor appointments turned into managing his care as his health declines. We visited Curt’s Neurologist only 3 times in 2010. He helped us get Curt referred to Physical Therapy for a cane, The Wheelchair Clinic to be fitted for a power chair, Occupational Therapy to help Curt learn easier ways to manage tasks such as eating and dressing. Speech Pathology taught Curt how to manage the decline of his speech, chewing and swallowing. Respiratory Care keeps an eye on Curt’s breathing (they want to install a feeding tube in him while he is still healthy enough to have general anesthesia). The MDA sent us to the The ALS Neuromuscular Center at UC Irvine to see the top ALS doctor. He too, was focused on managing Curt’s care, not healing him. Seems weird to have a terminal disease and rarely visit the doctor. I guess that’s just how it is with ALS. No pills, no shots, not many tests, no hope.
The only hope we have been given since his diagnosis in November 2009, came from Tom Lahey (the Mad Scientist, as we refer to him) the inventor and owner of Lutimax in August of 2010. This natural supplement did wonders for Curt’s speech. Tom counseled us on a nutritional program which included limiting sugar intake while increasing protein and veggies which helped Curt's symptoms. Tom introduced us to a friend of his who has had ALS for over 10 years, we all sat together and created a supplement program including testosterone, hcg, and protein shakes based on what has worked for him. This total program may have seemed to slow the progression of the disease for awhile. If nothing else it gave us hope and we were “high on hope” through November. Then reality sinks in and we realize Curt’s health continues to decline each day.
I haven’t said much about Curt’s health and struggles over the last few months as we have tried to remain focused on the positive and on the things he CAN do. To most people he looks completely healthy sitting in that wheelchair. Always smiling, well-groomed and tan, I know strangers wonder why he is in a wheelchair. They always look him up and down and then focus on his legs trying to figure out what is wrong with him. It’s kind of entertaining to walk behind him and watch the looks from people. Anyways, he wants to present an image of health and vitality. He works really hard at that and I support him fully. After seeing Curt looking so good and acting cheerful, some may wonder, what’s so bad about ALS? Well, tonight, I am compelled to share what it is really like battling the disease and what Curt goes though each day.
It starts really early each morning, usually around 2:00 or 3:00 am; sudden, severe uncontrollable shaking of his legs while he is in bed. The shaking is so violent it causes the entire bed to shake and startles me awake. You would think I’d be used to it, but many nights it wakes me thinking we are having an earthquake.Soon after the shaky legs come the leg cramps. His calves cramp and when he tries to flex his ankles his shins cramp. He can’t jump out of bed to stretch out the cramps so he just tries to endure it and wait for it to pass. If I hear him cramping (not that cramps make a sound) I will jump up and massage his muscles. Usually he tries to fight them on his own because he doesn’t want to disturb me.
He wakes up when I get up for work. Since his arms are weak and his legs don’t bend he can barely get himself up and out of bed and into the wheelchair which sits directly beside the bed. Once in the wheelchair he can get right up to the shower door where I help him as he takes two steps in and holds on to the safety grab bar. We shower together, where, instead of focusing on the fact that he can’t do it himself, we have fun and joke around. He takes a couple of shaky and scary steps back out of the shower and after I quickly dry him off he is back in the wheelchair. We both sigh with relief that the most dangerous part of the day is over. I help him with squeezing toothpaste, applying deodorant,dressing and sometimes shaving. You can imagine how hard this is for him; to have to be cared for. We have found that if we laugh our way through it, it is easier. I tell him, “you better be nice or I will dress you in mis-matched clothes or no shoes today.” He gives it right back to me with, “I’ll tell them that bruise is from you.”
His hands are so weak and bent that he has trouble holding a hairbrush, toothbrush or eating utensils. He seems ok with holding his cocktail glass though(?). He has a hard time drinking liquids and often chokes as his swallowing muscles are becoming weaker. He drinks a protein shake each day which helps him swallow his supplements. Talking is hard. He constantly clears his throat and speaks as little as possible these days. He can’t yell or even talk loudly. A few weeks ago Cayden and Corbin were trying to light the outdoor propane heater. Between the music and commotion and the fact that Curt can’t raise his voice, Cayden lit it when Curt was trying to tell him to wait. The propane burst when Cayden lit it and his fingers were burned. Curt was frustrated and upset that he couldn’t protect Cayden and he didn’t hear his warning. Luckily the burn was not bad and Cayden will get it from now on.
Up until last week, I would prepare Curt’s breakfast and take Corbin to school and then go straight to work (Clarissa & Cayden leave for school earlier). That would leave Curt home alone from 8:00 - 2:00. He would struggle to get snacks or lunch and we were also worried about him falling when no one was home (we got him a Life Alert device). Anyways, last week we hired a home health care giver named Rosalie. She has a bubbly personality, lots of energy, is a great cook and already loves Curt. She makes him an awesome healthy breakfast each morning, fixes him lunch, protein shakes and prepares dinner for us to cook in the evening. She drives Curt on errands and keeps him hydrated as he tans (jk, not yet). She helps with the laundry, kids and shopping. She has been a blessing in that not only does she care for Curt and give me peace of mind that he is safe, but also does a lot of household tasks so I have more time to spend with our family in the evenings.
When bedtime rolls around Curt once again needs help getting ready for bed. Recently he has had super cold feet. We have placed a heating pad in bed near his feet which really helps him a lot. He struggles to get into bed and positioned, he can’t scoot up or down in bed, so where he lands is where he lays. He usually sleeps pretty peacefully until the shaky legs start.
Through all of this he remains the most positive man I know. He used to be completely independent, never asked for help, and did so much for others. He never gave it a second thought to help wherever and whenever needed. I know that the fact that he needs to be cared for is really tough for him. It has been an adjustment for both of us, but laughter and love is what gets us through it. He constantly amazes me and I am still the luckiest girl in the world!
We were sad to learn that a fellow ALS friend passed away last week. He was a friend of my parents who was diagnosed in February of 2010. He was 70 years old and lived in Florida. We enjoyed corresponding via email and comparing our ALS journeys. He and his wife (who needs full time care due to severe memory loss from a stroke) would travel in his RV and ride Harleys. Once he was diagnosed he spent his time arranging for the care of his wife knowing he would not live to take care of her. Although we never met him personally, we know from his emails, his devotion to his wife and from mutual friends that he was a great man.
Once again we had a week full of friends and fun! Rosalie started on Monday and fit in easily. Cayden began shooting a commercial at the office for American City Pest. We had breakfast with the Friday morning gang at Adelita’s, and dinner at Matsu with a group of 14. Everyone joined at our house after dinner for drinks and dessert. It was fun sitting around the fire and laughing. Saturday, Cayden tried out for the high school volleyball team. Sunday, I shopped and lunched with Lisa and Rae Lynn in Burbank; it was nice to get away and have girl time. George came over and fixed the heater and more in the Cherry Bomb while Curt hung out in the driveway enjoying the warm sun. Mark fixed the Kegerator which lost its coldness and we were on the verge of losing a full keg of beer. Monday we went miniature golfing with the Melanson Family and then had a fun lunch at a semi-deserted sports bar while we played awesome music on the jukebox and the kids played pool. My car got broken into on Monday and my 3rd row seat was stolen along with a birthday gift for Jim. I am glad that’s all they took, but it bummed us out after a fun day with the Melansons. Mom and Dad spent the night in front of our house last night on their way to Lake Havasu. We enjoyed a fun and lively dinner at Taco Surf. Paul Craig has been busy fixing things around the house and Tomas is painting the awning and garage. Rosalie came early this morning and made Clarissa and Cayden breakfast burritos to eat on their way to school. They were so excited and said they were the best burritos ever. It is impossible to focus on the bad effects of ALS when we are surrounded by so many wonderful people. Thank you all for being a part of our lives.
Cindy, Curt, Clarissa, Cayden & Corbin