Here I am with my latest new toy! A mechanical arm that helps me lift my food and drink to my mouth. It is an energy saver! The arms are really going fast now! I am in terror that soon I will not even be able to lift a can of beer! :(
We got back from the lake and started a series of doctor appointments.
The toughest was the respiratory specialist who informed me that my FVC (forced vital capacity) which is a measurement of your breathing ability was way down. Normal is considered 100%. At diagnosis mine was at 125% last spring it had dropped to 85% and now it sits at 46%!
This means...that I will be using a bipap machine to help me breath at night and as much as I can handle it during the day. They are also fast tracking me to get my feeding tube installed before my breathing get so bad that they can't do the operation. It will mean a week at Health Science Centre. I will still be able to eat by mouth but they want me to start using the tube for extra nutrition as I am down to 145 lbs. I started at 175 lbs. Joan calls me her "skinny ass husband".
We knew this was all coming down the road but we certainly didn't think this fast. So the road is getting rockier!
I sit today not being able to cut my own food, only using very light cups or plastic glasses 1/2 full.
I am unable to lift my hands over my head. I brush my hair and teeth only by supporting my arms on the arms of the wheelchair. I can't sit up or roll over in bed. Where I am put I have to stay! I was enrolled offically in the palliative care program last month. They have been great!
I now have a circulating air mattress to prevent bed sores as I can't move on my own. It also helps with the sweating and itching that I experienced quite severely before the new mattress.
Luckily, I still have my voice and am swollowing not bad but chewing is so very tiring. My hand dexterity is not bad yet but the strength is gone. My hand strength sits at 20%. Joan cuts all my food up for me. I am a 24/7 caregiving project! It is no longer safe for me to be on my own!
We have homecare now scheduled to start coming in and helping Joan 5 mornings a week.
