After accepting Jim and LeeAnn’s generous offer of using their Florida condo, we started to plan our trip. We had one major obstacle to overcome which was my comfort for a 23-hour van ride (I sound like such a diva). My neck muscles have gotten weaker so I’m no longer stable in the front seat without some sort of brace. We thought of possible solutions such as flying first class because the seats recline more than coach or renting a motorhome or a handicap van, but nothing seemed to work much better than our minivan. We tried multiple pillow options while sitting in the front seat and the one that gave me the most comfort and neck support was a pregnancy pillow, but sitting with that huge pillow wrapped around me for a 23-hour car ride would not work.
On the day we were going to leave I changed my mind because we hadn’t found a good seating solution, plus my legs aren’t much help anymore which presents a whole new set of problems so I told Mark we should cancel our trip. It’s funny because Mark is usually the cautious one but this time it was me. Mark called Bryan first to break the news because he was our co-pilot on the trip. Bryan seemed to take the news just fine. Mark then called Kelly and LeeAnn who sounded disappointed but understood. About thirty minutes later Kelly came over to see why I changed my mind and right away she pointed out the positive reasons why we should go on this trip. She left and minutes later Bryan called with lots of passion in his voice reciting all of the positives of this trip but then he said something really important that helped me change my mind. Bryan said, “I’m confident we can find a solution to every obstacle we face on this trip. Dad and I are willing to dedicate our whole trip to trying to make you comfortable and if we can’t, we’ll turn back and go home.” Bryan was right. There usually is a solution to most of our problems if we are willing to open our minds and get creative. How could I say no to Bryan’s pep talk? He was right so I decided to go.
Back in January our friends Jim and LeeAnn White asked us if we would like to use their condo in Florida in March. This unbelievable offer was so sincere that we thought we would like to talk with them face-to-face about it so we invited them over. Every time we thanked them they said, “Please don’t thank us. It’s not necessary.” They made us feel like family. They said that they love us and it would please them very much if we would accept their gift. When they left that evening they gave Mark the key and told us to go make some wonderful family memories. God bless you, Jim and LeeAnn. We will never forget this.
My respiratory system is being challenged because of ALS, which makes it difficult to get rid of phlegm and mucus. I can no longer spit, clear my throat or blow my nose but my suction machine can do it for me, thank God. I would be in big trouble without it because I would be coughing or choking all the time.
So here is how it works. It literally sucks the snot out of crevices that I didn’t know I had. The base of the machine has a motor and a small bucket to which a long clear hose is attached. The other end of the hose is attached to a slightly curved wand with the other end having a suction tip much like the dentist uses to suck fluid from our mouths. When I feel junk in the back of my throat someone sticks the wand into my mouth towards the back of my throat and they slowly pushes the wand deep down, almost near the gagging point until they hit phlegm. The machine sucks it out, it goes through the tube and into the bucket. We repeat this until I feel cleaned out. I use my suction machine multiple times each day. Sometimes I use it on my nose which works great. The first time we tried this I thought Mark was going to suck my brains out through that small tube because it made some really strange noises. If we don’t suction my nose, Mark will wad up a tissue and twist it up each nostril to clean my nose.
I probably told you more information than you wanted to hear but this is our ALS life and we have no choice but to adapt in order to survive. I’m so grateful that my family and friends are willing to adapt with me. I am blessed.
Mark turned sixty on Saturday and our kids and some of our friends brought the party to us. Chad was able to come home from Dallas for a long weekend and Corey had been home the weekend before to celebrate Ashley, Harrison and Mark’s birthdays.
Before Mark’s party started our kids all came together in our living room, with Corey tuning in from San Francisco via FaceTime, to present this beautiful video that they made for him.
Lately I’ve had trouble emptying my bladder and I’ve been worried about it even though it wasn’t causing me discomfort. (I’m telling you about my peeing problem because the solution is so common-sense and easy that it may help you someday). Last Sunday our friends Joe and Sheila were visiting. Joe is a well-respected urologist in Muskegon so I thought I would ask him about my bladder problem. Joe explained that if we don’t empty our bladder each time we urinate, the leftover urine may harbor bacteria that could eventually lead to a urinary tract infection or having to get a catheter. He explained that as the muscles in my stomach get weaker it will get more difficult to push the urine out so he suggested that we try a simple procedure to see if it works. He told Mark to put a couple fingers on my lower belly and as soon as I start to urinate apply some pressure on my bladder until it is empty. This simple procedure worked great. Thank you, Dr. Salisz. Hopefully I will stay infection free for awhile.
ALS doesn’t discriminate which muscles it attacks. Eventually it gets to all of them.