Rick and Joan here..."A few more tips & tricks"

1. Aspirator/Suction Machine: A new piece of equipment! On hand for the time where Rick will need to clear the flem out of his throat. We have noticed his voice is getting harder and harder to clear.



2. Digital Overhead Clock: Rick can lie in his bed without trying to turn his head to check on the time. It really enjoys it at night when he wakes up and looks up at the ceiling and there it is the time in big red letters!









3. Velcro Leg strap for his legs: I have used the wide cloth strap with velcro ends that came from a microfibre blanket from Walmart to keep his upper legs together. Otherwise, they will flop over to the sides.





4. Voice Activated Walkie Talkie's: We have found this so useful when I leave the room. Rick's hands are very weak and will so no longer be able to push a control button. We just set the Walkie Talkies to voice activation and all he as to do is talk, moan make noise and there I am!!!

Joan here..."Homemade hand splints"

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.

Joan here..."Roses are red, violets are blue...."

Roses are red

Violets are blue

ALS may have Rick in bed

But He still does what he can do!

I was so thrilled when a dozen red roses were delivered to our door! I was in awe how Rick pulled that off as I am the one who gets him the phone and etc. How did he do that without me knowing....sneaky....sneaky!!! I had called over to the hardware store in town (which happens to be where our local florist operates from). When I went out to do some errands Rick had the phone on his lap. He didn't have the phone number but all he had to do he said was hit redial!!! And it all fell in place!

Rick here..."Happy Valentine's Day"

Well, my sweetheart pulled off quite a surprise for me! She arrived back from uptown tonight, came into the suite, grabbed my hand and said "I am taking you out for a Valentine supper tonight!". Like the obedient husband that I am I followed her into the garage where to my surprise she had transformed a small area into an intimate romantic dinning room!

Any of you who know Joan know that Joan is the party queen and she outdid herself this time. We dined by candle light on salad, bun, garlic mashed potatoes, bean mixture, steak, and lobster...did I say lobster??? YES, it has become a Whitemouth specialty...thanks to our friends Mike, Arlene & Kirsten at the Whitemouth Hotel! Even complete with a strawberry angel food cake dessert!!!

Joan has the most incredible gift of being able to transform the most unlikely spaces into wonderful party places. Thank you from the bottom of my heart sweetheart. You indeed are one of a kind! (This is Joan...what else can he say???...I am typing this for him!!!) :)

Rick and Joan here..."A family visit"

We had a very wonderful day today visiting with Uncle Keith (who flew in from Calgary), Del and Dad and Mom! This made our day really special as I am not able to get out and about right now.
My uncle always comes bearing gifts and words of encouragement to both Joan and I.

Of all things...we forgot to take a picture of the special day! Too busy talking and hugging!!!

Of course, my mom took care of feeding me and dad the usual helping me with the urinal bottle. That is one job...the urinal bottle --that Joan loathes!. (Don't forget folks...I am typing this for Rick!!!)

It was great to see Del who so very accommodatingly let Joan demonstrate the commode chair on him!!! We all had a few laughs!!!

PS Joan says don't forget to say "hi" Del!

Joan here..."Praying is good but helping hands are even better!"

Today was one of those days where...we were suppose to have some people over and I was already overwhelmed as we cancelled homecare this morning as the lady had a bit of a cold. We can't chance anyone coming in here with anything as Rick can't cough or sneeze as his muscles don't do the job anymore! That means I am on my own for the day when we do that.

If you ever wonder how you can help people like us just ask them...and listen! For us right now....coming and praying for us etc is good... but does not take the pressure off us for the day in any way. We are just trying to get through each day in one piece! Don't ever underestimate the little practical things that you can do for a person. It really takes the pressure off on some days knowing some basic things are being taken care of!

If anyone is looking for a night away and would not mind getting up through the night please do give us a call....we have a bed...and can provide the "getting up through the night"!

You can't get to God by your works but boy you sure can get to us!

Joan here..."A shopping we will go!"

I headed out yesterday afternoon to pick up supplies with my oldest granddaughter. We had a blast! Giggled our way through lunch and tried some new foods and shopped till we dropped! Mostly supplies for Rick. I might add she picked out a few sweet things for grandma along the way. I was so amazed how a 12 year old would even be interested in doing that!

While we were gone our little Katie (7) made it her personal quest to come over and check on grandpa every so many minutes. She did her little visit even though her parents were in the house. She would not let them go over and check on grandpa... it was hers to do! She is also the little one that fills up our wood holder in the suite. She carries the wood from the wood pile and works with me in stacking it in doors. It usually works out to be one of the colder days when she does it. That doesn't seem to stop her enthusiasm and never stops till the job is completely done!

When we got home with all kinds of special foods for supper Tia asked if she could once again feed grandpa. She does such an excellent job of it. We are so fortunate to have such great grgirls living next door. They have such tender and thoughtful hearts!

We are just sitting around and waiting for Spring to arrive! There is an incredible rumour going around that Spring WILL be coming!

We are still in the process of arranging for all the necessary planets to line up to be able to bring in Rick's chair and have the "sip and puff" equipment fitted in a couple of weeks.

Rick's voice is becoming more scratchy and hoarse and takes longer to be normal ...I don't know how to explain it.... We are hoping it is not phlegm building up in there as he can't really cough or sneeze properly. We are in the process of looking for a suction machine and a cough assist machine to try and stay ahead of this all.

I have located a product that is called "Smart Vest" and it is used to help maintain respiratory health. It is an Airway clearance therapy using High Frequency Chest Wall Oscillation (HFCWO) and promotes excess mucus clearance and improve bronchial drainage. If any of you have some ideas on this please do let us know. We are so very uneducated in all of what is out there in "health" land to make this disease more manageable!

Rick here..."Happy 2nd Anniversary to me!"

It's February 1st and officially two years since I was diagnosed with ALS! Wow...has our life every changed!

When you are diagnosed with ALS you are handed a death sentence. Every day becomes precious! I would not have dreamed that I am essentially a quadriplegic only I can feel everything. Whether you have ALS or not you should treat every day as a gift that you have been given. Every one of my days from here on in will be particularily special as at diagnosis I was given two years to live! I am still here and intend to be for a long time yet! Just need to get my body to agree with it!!! :)

A heartfelt thank you to my sweetheart Joan, our families, friends, dozens of health care professionals, and the countless prayers who have helped me get here!

Happy 2nd Anniversary to me...Happy 2nd Anniversary to me....Happy 2nd Anniversary to meeeeeeeee....Happy 2nd Anniversary to me!!!!!!!!! Now that I got that all out of my system I will go and celebrate by sipping a nice cold beer with my straw! :)