Joan here..."Phone adapter and electric blanket to the rescue"

Rick's arms are so very weak and holding up a telephone was getting nearly impossible so our brother-in-law, Roger solved the problem. He came up with a very light headset that just hangs over Rick's ear and plugs into our portable phone.

Rick's cold feet were getting to be a challenge also. My sister Kathy came to the rescue with an electric blanket that is light weight but nice and warm.

Seemingly little things can make such a huge difference in Rick's comfort. The warming of the feet makes his joints even more supple when doing range of motion exercises. He is getting those done on his arms, hands, feet and legs now.

Rick here..."The bad news and the good news..."

The bad news...

My arms and hands have been getting weaker and weaker and I can no longer hold anything in my hands even my favorite beverage. Believe it or not I am actually reduced to sipping my LAB Lite through a straw! ARGHHHHHH!

Wait a minute...on the other hand...

The good news is...

I CAN still drink Lab lite through a straw!

I suppose it all comes down to perspective. Is your glass half empty or is it half full????? The crazy part of ALS is that while you grieve the loss of daily simple capabilities you also have to realize that in no time it will be much worse.

My advice of the day to all...cherish your loved ones, squeeze the joy from every moment and live each day as though it was your last! Don't sweat the small stuff and realize that most of the things that drive us crazy from day to day are nothing but SMALL stuff!

Joan here..."A few comfort things for Rick"

He is fast asleep right now! Which is a very good thing as he has uncomfortable nights.

Rick's mom found the foam pillow when we went shopping for some really soft little micro blankets to prop up his legs.

We also discovered placing our camping cot beside the hospital bed once it was lowered to as low as it could go gave us a chance to hold hands and lie beside each other!!! It was driving us crazy that we couldn't sleep by each other.

The foam pillow works as an awesome support that is both firm and soft for his now turning in toes and feet. It has brought him much relief and I don't have to get up as much at night to straighten them up for him. We both win! The little micro blankets $8.00 with extra short and extra soft surface make it so very comfortable to prop up legs, arms and even place in the wheelchair beside his legs so the legs won't rub on any metal.

Rick and Joan here..."Mom and Dad to the rescue!"

Here are a few pics of the folks learning the ins and outs of the "peg feeding", "peg cleaning" and the "showering routine". Check out Dad's rolled up pants and shower shoes!!! Mom and Dad swooped in and stayed for us over the weekend to help with my care. Thanks so much guys!

As you can see there is a lot involved now in my care. Takes a team of people.

My bro and two nephews put up our deck Christmas lights this weekend. We are enjoying looking at them! Thanks guys for that and the special meat treat!!!

Rick here..."A new Pegger perspective and I don't mean WinniPEG"

A little info on the "PEG surgery"... (Percutaneous Endoscopic Gastrostomy) that I just had. From a "pegger's perspective".

Well, it was quite a rush. I was on a waiting list for the first available spot they could fit me in for my peg tube. It finally got done last Friday. This is how my process worked.

I was wheeled into the operating room. The procedure is done with your head and chest elevated about 30 degrees. The first thing they did was spray the back of my throat and mouth with a freezing agent. They then tied my hands to the side of the stretcher...I suggested that they must have not wanted my help! lol They then put a plastic mouth piece with a hole in the centre of it in my mouth to clamp down on.

You then get a little shot of happy juice---not enough to put you right out but rather to fog you up real good. A camera is then inserted down your throat into your stomach via your mouth. It is a pretty weird feeling as you are trying to breath and gag at the same time. It goes surprisingly well though and there was no sense of panic at all!

The doctor scopes out the stomach with the camera then they dim the lights in the room and shine a very bright light out the camera end. It is maneuvered around so that the light shines out the front of your belly. A small incision is made and they reach in and pull out the plastic tube that they have fed down the camera cable. The tube is about the size of a gas line.

They secure the line from the inside and outside with a couple of plastic fittings called "bolsters". Really a glorified plastic washer. That is all that there is to it. The whole thing took about 20 minutes. Once the op was done they put on my bipap and up I went back to my room.

After the operation:
Now for the fun part...getting emotionally and psychologically used to the darn thing! It sticks out of my stomach about 6" above my navel and is a foot long with a two headed plastic adapter at the end for feeding and flushing! Not as scary as that seems! Check photos on previous blog entry for the photo shoot. lol

They run water to flush the lines to make sure everything is okay for the first time. As I watched the very first injecting of fluid it was pretty strange. There is no sensation when being fed through the tube. I watched the liquid go in and waited. Nothing happened...no pain...no sensation...kinda anti climatic actually!

I can still eat and drink as usual. We use the tube feed each evening to top up my calories for the day. Later on when my swallowing is more affected this will be the only way that I will be able to take nourishment, fluid and of course meds. The reason for the rush in getting my tube was because my breathing has gotten so much worse. Once your breathing deteriorates to a certain point it is not safe to operate on you so we wanted to get this behind us.

The big part of the peg is the work involved for your loved one to do the feeding and clean up of equipment afterwards. Joan has mastered it through much fear and trembling of the unknown. She was so scared of letting in air into my belly. It doesn't work that way what you have to be careful of is stomach contents slipping back out the tube. A tip: Remember to bend the tube when inserting or removing the feeding tube line! Ask us how come we know???? lol

Rick and Joan here..."We are home!!!!"

A huge thank you to all our new friends on the 6th floor (GH 6) at the Health Science Centre Hospital. Everyone there went above and beyond to help us through a very difficult and emotional time!!! Thanks so much for all your kindnesses, care and professionalism. We felt like welcomed guests to a 5* hotel... Special thanks to our Dr. Janice...You are ALL the best!!!!

Rick went into the hospital with an "inny" and came out with an "inny and an outie!" I have told him he was always so special!!! lol The feeding tube was placed about 6" above his navel. It allows him to eat both by his mouth and have supplement feedings through the tube. He won't be so tired having to chew all his food now. We are hoping that he will be able to gain some weight now!

We were in for 5 days. A huge thank you also to our families for their visits, phone calls, support, flowers, cards and special drawings by our grandchildren! Thanks Val for spending a night standing guard over Rick while I had a long needed sleep in a real bed! My sis and husband arranged for a wonderful massage for me also. It felt so great after having slept in a lazy boy for 4 nights by Rick's bed. We came home today packed with some homemade soup and food mom put together for us also.

The "Peg" tube (Percutaneous Endoscopic Gastrostomy) that was installed allows Rick to get his nutrition by liquid supplement while he can still eat only the foods that he really wants to eat!!! ie...meat!!! NO more salads if he doesn't want to eat it!!! lol

Yes, for those of you who are wondering....once again....I did the traditional kick the feeding pole thingy...wishing we would never have to need such a thing....but then proceeded to get it set up to do Rick's supplement feeding for the first time at home! ( as noted in our previous blogs... A traditional thing I have done since the very beginning was...to kick the new piece of equipement but then embracing it's ability to make Rick's life easier!"

I spent time in the hospital learning to do the "peg feedings" and I got taught in cough assist techniques. The rest of the time I spent just taking care of my man. They talk about some women being "high maintenance women" but yikes...I am married to a "high maintenance man!!!" As I type this he is being fed for the first time here by the "peg".

Rick and Joan here..."Feeding Tube here we come!"

We just got the call tonight Rick is going to have his feeding tube operation tomorrow morning at the HSC. We are off tonight to stay at the Brummit Feasby House. So as you can imagine there is a lot of flurry and packing happening right now!!! So keep us in your prayers!