Rick practising his LVR (Lung Volume Recruitment). He practises this 2 or 3 times a day. By squeezing the plastic bottle extra air is forced into his lungs to fully inflate them. This keeps his lungs healthy and stops fluid buildup. Rick's lungs work perfectly the problem is his muscles fail to operate them. Currently, he is existing on less than 1/3 of his previous lung capacity. Studies have shown that daily use of the LVR increases longevity. Rick does anything he can to maintain the best quality of life not to mention quantity of life that he can!
Ricks hands are curling in really bad because of the muscle atrophy. So in order to help keep them straight so they won't stiffen and get unbearably sore in the finger joints I made him some hand splints.
He did not want splints that would lock in his fingers and thumb or cover his hands. So I came out with this alternative. Crude but effective!
I found a vinyl tub pillow with foam insides and cut it in half. Took some velcro straps and made a pair that we can slide his hands in or out within seconds. The air still gets to the hands and the bubbly foam underneath the hands allows for air circulation below the hand.
This doesn't seem like a big deal unless you are the one who is looking at your own hands and they are becoming deformed in front of you. This will help defer for a time further curling and finger joint pain.
His feet are always supported. During the day with special slippers and at night with his foam support. His toes are no longer straight at the joints. They are always in a bent position. That is why he loves us to bend his toes back when ever we can. It helps relieve the pressure.
Whoever said, as we were told in the beginning ,"There is no pain in ALS" is not telling the whole truth. The disease itself maynot carry pain but the effects of the disease on the body causes much pain and discomfort!
I am amazed at my amazing husband as we walk through this together. I had one of those days yesterday where I just looked at him and cried. It is all so overwhelming at times. His hands are so sad looking when he tries to just move them a bit. He asks me to straighten them out at times that is why I made the hand supports. His hands curl and cramp. He keeps trying to reassure me about all kinds of things. I keep promising him I will take care of him and he will not be alone! We are some team!!!
There are a lot of more physical losses coming down our road really quickly.
I couldn't sleep on the camping cot anymore as it was so uncomfortable so I began my hunt for a folding rollaway bed. Here Julie had one kicking around. She even delivered it to our door. We couldn't believe it! It was so amazing to once again be able to snuggle as close as I could to Rick. We cherish each moment that we can. It is quite interesting to sleep next to someone with a mask and hose on their face and unable to move at all. So he asks me to take the mask off every so often so we can just snuggle like normal. Now that was gold!!!
My sister and husband sent us software called "Dragon Naturally Speaking" a voice activated software program. We are in the process of hooking that up with a head mouse software system that they will be sending us home with on Friday when Rick gets fitted for his sip and puff. Then hopefully, he himself will be back up typing to ye all!
It has been a long winter.......but a short winter in terms of our time together. Each day and moment we have together is so very precious! Any day past 2 years is a bonus day! That is where our thankfulness lies.
