#walkforals

Today we walked for ALS - and for @nerdbiskit and her mom. 💜💜💜 #walkforals #seizetodayals (at Bay Front Park Hamilton)

Producer: Kent Parker

Often referred to as Lou Gehrig’s Disease, amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis. Any amount counts, please donate to help sponsor the the Walk for ALS (The ALS Association).

And then I read Psalm 145 - a song of praise from David, knowing that deep in her heart, her desire was even now to continue praising her Lord and Saviour. I read verse 4: "One generation shall commend your works to another, and shall declare your mighty acts." I remembered my sister Caroline, her story, and my mother's desire to share it. I struggled to keep my composure. I continued: "The Lord upholds all who are falling and raises up all who are bowed down." "The Lord is near to all who call on him, to all who call on him in truth." I wasn't only reading for her, I was reading for myself. As my time neared its end, she seemed calmer. Happier. Content. She looked at me with strength in her eyes, speaking love with her spirit, even though her entire body was lame. It was as if she, also, knew this may be the last time we'd be together. I told her that even though my brother couldn't be there, he certainly would have were he able; he was here, with me, with us, in spirit. I got the text message that my ride was waiting. I had to say goodbye. I don't remember any past visits during the year where she wasn't heartbroken when we had to leave. On our previous visit, it was devastating when, as we walked from her room, we heard her wail in sadness, and my dad stopped, wanting to go back to her room, clearly emotional, but having to make himself leave. This time though, I paused at the door, stopping to take one last look at her, and she back at me. She smiled. ...She smiled. The hall was quiet as I walked to the exit, and I was filled with joy. All the day's events had led to this end. All the problems, all the unexpected events, issues, worries, frustrations - they all led to this time. As it turned out, that visit indeed was the last time I saw her. The following two months were more of the same - no improvements, less ability to communicate, more struggling, and continued prayer. My dad remained as fervently dedicated to being by her side as he was physically able. March 4, 2012 Freddie (Jan's sister) ~ The call came in from your Dad this morning that your Mother passed away at 5:15am. Your Dad was with her all night and is now resting at home. That day, my mother's 10 month battle with ALS had come to an end, but her life with her Lord was continuing, just in a new form. Suffice to say, I was overwhelmed with a mix of emotions - from sorrow, to relief, to joy. But at this point, it was my father whose struggle now alone was now truly beginning. The next year and a half was another story, filled with trials and struggles, financial and medical woes, but still surrounded by ever-present prayers, friends and community support. But, in time, he too left this earthly home to be with his Saviour. Knowing his own time was near, he wrote of his hope and security: "My body may be weak, but my soul is strong." His words reminded me of one of my parents' favourite hymns I remember them singing passionate when I was young and we sat in church: When peace like a river attendeth my way, When sorrows like sea billows roll, Whatever my lot, you have taught me to say: It is well, it is well with my soul! But Lord it's for Thee, for Thy coming we wait. The sky, not the grave is our goal. Oh, trump of the angel! Oh, voice of the Lord! Blessed hope! Blessed rest of my soul! It is well with my soul. It is well. It is well with my soul. You are the Rock on which I stand. By Your grace it is well. My hope is sure in Christ my Saviour - It is well with my soul! --- Thank you for reading. And, if you pledged towards my Walk For ALS this year, you have my sincerest thanks for your support, and that of the ALS Society of Canada, and all families and friends with loved ones who are suffering from this disease. We're one step closer to finding a cure. Please don't let this be the end of your awareness and contribution to the cause. You can find more information about the Walk For ALS at http://walkforals.ca, including many links to resources and organizations. TTFN. ---- [ als.thebruce.net ]

-One Step at a Time, index- Oct 11, 2011 Bob ~ I didn't get to see Mum today because of my chemo visit, but over the telephone she seemed OK, 'tho she doesn't talk. Mum still has some intelligibility but only face to face. She now has some devices, such as laminated pages (one provided by the nurses), a couple provided by the A.L.S, a paper copy of the Speakbook and a 3-ring binder word/ phrase book with laminated pages. I had to modify it a little with a wedge inside front and rear covers because Mum couldn't get her clenched fingers under the page change tabs. I am making up something similar, but smaller and that needs her only to move her hand a few inches horizontally and her listener to turn the appropriate pages. We still need to devise/ find a mouse/ trackball - she wants a trackball - that is sensitive enough for her to press the buttons. I want to modify one to put a very sensitive switch pad on the outside of the mouse. We need to get her to be able to use her laptop, then she will be able to talk to us all by email or facebook, as well as play her games and read her Scotsman paper, to do her on screen bible study and surf the Net. Oct 13 Bob ~ I visited Mom today for a little over an hour and she is almost holding her own. She is experiencing less and less use of her hands, much assisted by the fact that she is not using them. She is right handed and that one is getting more puffed up. I think the main reason is that she is apparently not getting physiotherapy, probably she is still in isolation and visitors have to put on gloves and put on gowns. Her favorite excellent physio - Allison - has left and moved away. Allison's replacements are two young much less experienced ladies - not their fault! Mom is now very short tempered when I - or others - cannot understand her. Then she starts to break down and can begin choking which weakens her further. I bought her a trackball which she wanted and immediately started using it to play her Bookworm game. She doesn't need to move her hand, can move the ball with her thumb (orientation doesn't matter) and the buttons are light enough for her to handle. Now she needs to practice practice and practice - without getting exasperated She cannot use a touch-screen - she slides her hand. Mom is moving fast to 'eyes only' - eyes left, right, up, down, head up, head down. I am trying to make up a different form of laminated book using a combination of SpeakBook and A.L.S. input of words and ideas. I have taken pictures of all pages of words/ pictures given her by anyone - including nurses. That input - and others can be added - could be put into PDF form. See if you could also think of something and perhaps try your friends/ contacts. Speed is essential to be in time to reduce her suffering with not being able to converse! Because of her isolation I can't even touch her directly. We'll try the A.L.S. Hi Tech systems soon I hope. But if they can't reduce the $800 a year charge, we won't be able to use it. Keep trusting fully in Him and pass your worries over to Him as much as you are able, TTFN with luv, Dad Nov 19 Bob ~ Mum seems to be holding her own. Out of isolation in room 107, a fairly plush family suite. She now watches TV and is or will be able to watch videos, if people will deal with them for her. She is booked for another visit to the ALS hospital in Ottawa on Dec 2nd to re-assess her. They would like me to go with her if I can - one week after my next chemo on the 25th. Mum is still needing emails from her family for me to read to her. Frannie has set up a meal train of volunteers willing to supply me a meal. She is also coordinating volunteer rides by people willing to take me to see Mum. The responses have been amazing. I have been very weak for a week, but recovering a lot at this time. I have not been strong enough to set up her laptop, but hope to when I visit her next week. ---- [ als.thebruce.net ]

-One Step at a Time, index- Sept 10, 2011 Bob ~ Mum will start feeding through a stomach portal next week. She will also be using a computer 'Text to Speech' by the time you arrive. She would use the mouse or such and an onscreen keyboard. Mum could be going to a nursing home any time from now to 18months away. They say it will more likely be toward 18 months - if she lasts that long. She keeps having bad choking sessions - very tiring and frightening. Sept 12 Bob ~ Things are getting very hectic here. The latest situation for Jan is that she had a second serious choking session today and had to have her throat suctioned again. She is very weak. The sooner they get some nourishment into her the better. She should be visited by the surgeon on Tuesday. Hopefully they will start the stomach portal very very soon. I haven't seen her today, as I was having my 2nd MRI at the General. When I phoned her at around 5:30 and at 7:30, she still sounded very low. I expect to see her tomorrow - Wednesday - then I'll know more. Sept 19 Bob ~ Mum and I went up to the ALS occupational therapy section today, to identify what devices they can provide to help her communicate. The meeting went very well. Low tech devices, such as word books or picture/word pages will help, and Jan liked some. Hi Tech devices would cost us $800 a year, unless they waive it because of low income Mum woke up in the middle of the night choking. A voice told her to ring the bell to call for help (no one was in the room). It took them an hour to stabilize her. She was very tired when I arrived at 9:30AM and she managed well through the day, but I left her at 5:30 and told her to rest well. Tomorrow she is due for an ultrasound and an X-ray to try to find why her 'good' right hand is getting puffy. Sept 22 Bob ~ Jan was low today. Another choking session apparently. She is now on RILUTEK. Let's pray it works. Sept 26 Bob ~ It has been a busy week. Mum has had her ups and downs, for she worries so much about me. If I can make it, it would be great if you could pick me up again - I am driving as little as possible these days. Also, it would be good if you could take us up on Sunday in time to attend the tiny congregation at the Shanliwood Baptist Church that Mum and I helped to found (there were 9 founders actually). I really hope you will be kind enough to do that. This could become a very special visit. Mum is lonely on Sundays - not even physios there. ---- [ als.thebruce.net ]

-One Step at a Time, index- Aug 21, 2011 Bob ~ I visited Mum today and I'm not sure whether I'm encouraged or discouraged. She did not sleep well last night - she did not take her half sleep tablet - and was very weak when I saw her at lunch time. She bucked up a lot during the afternoon. She is still very weak and doesn't like it. For the second time, she ate most of her little meal. That is a distinct improvement. I've told her, she must continue to eat better if she does not want to be weak. She is not getting encouragement therapy that she needs. She is now beginning both arms a little, tho' both are very weak. Another improvement. We need her at home, but she's not yet fit enough. Serious - I'm going to take Power of Attorney and DNR etc documents in next week. Mum can still write, but with difficulty. You realise, I hope, that she wants DO NOT RESUSCITATE and No Heroic or artificial life support - as do I. We both wish for no fuss quiet final services. All the above whether weeks or years away. Neither of us is giving up yet but we must prepare. If I go home first, I hope that her sister will help Jan. If Mum goes first, perhaps your uncle Geoff will help me somehow. Chin up, son (or as we say now to Mum 'corners up!' ie, smile) Aug 30 Bob ~ I just had a call from the hospital about Mum. They are calling a multidisciplinary meeting to discuss her progress or condition. It sounds as if they are going to want to move her away from me. If I cannot get to see her, I believe Mum will fail fast. Pray hard son. Blessings to you, luv, Dad Sept 1 Bob ~ Jan is a little weaker, speech very poor, but still walks with helpers about a dozen steps. The meeting went very well this morning - very positive - and Mum took it well. Thanks for all the prayer support. We were emphatically told there would be no rushing Jan out of the hospital and that we could take our time looking for a new home or, better, a nursing home that we preferred. No movement before Christmas or mid winter, it could even be over a year. They agreed it would be bad to separate us - for both of us. Sept 5 Bob ~ I don't know whether to be up or down. I went in to see Mum yesterday at 2PM. She was so weak and in bed. She was too weak to try to speak and I told her to rest as I partially broke down. She bucked up quite a bit fairly quickly, was able to talk and we went outside and down the street a way (puff puff). We are trying hard to get her to take the food she gets - pureed (including pureed pancake!). She won't take the food if she doesn't like the taste. We are saying she must eat it if she CAN even if she doesn't like it (like the Tylenol she has, crushed and with Yogurt). If she won't eat, I don't expect her to be with us by Christmas, barring a real miracle. Don't tell her. She insists that she is not giving up. I go to see her - she's low. I leave her - she's high. But I can't go every day and I can't be there all the time to keep her active and eating. Please send her an email ( to me - I'll print it as usual ) urging her to eat and move hard. The shortage of time for Mum is now extended a little as she has now agreed to the use of a stomach feeding tube if and when it is considered advisable. She was a lot better today, but she is still having choking and gagging sessions, which can be dangerous. ---- [ als.thebruce.net ]

-One Step at a Time, index- July 22, 2011 Bob ~ Mum is still in hospital and after many tests, the latest diagnosis is not a stroke but a rapid onset of A.L.S. That is most often a progressive illness and can result in at least a total loss of muscle useage. We think and hope they have made a wrong diagnosis, because she has been improving all the time. Aug 11 Bob ~ Yesterday we were told that she is now not registered as an Acute Care patient, but as an Alternate Care patient seeking to go home. She is more upbeat now that I can see her more often. The sooner we can get her out of hospital, the sooner we can reduce the boredom and get her doing things. Aug 13 Bob ~ It's breaking her heart not being able to see you two. I don't know how long she has. It could be weeks, it could be a year or two, but she is in a very bad way. If you guys could somehow make it here, it would lift her up tremendously. I am her other worry, unfortunately, for she knows that I may have an advanced case of Lymphnode cancer, so we don't know how long I have either. If Mum really does have ALS, it is considered incurable and hers is an advanced case. Please, pray fervently that the Lord will make a way for you to come. Aug 15 Bob ~ The doctors say Mum definitely has definitely ALS and it is very advanced. ALS is supposed to be always degenerative and always fatal. However, it usually starts and extends very slowly. For Mum, it came on like a switch being turned. They are sure, we are not, that it is ALS, but all the signs are there. She still cannot stand or walk alone, although she has improved somewhat. She is not improving with her speech and is often difficult to understand. She is sharp and alert and frustrated at her inability to communicate easily. She still breaks down and is overwhelmed with the kindness we are being shown - so much of it - but now she recovers quickly. Your mother has touched many hearts. We almost definitely will have to move house, to a wheelchair accessible bungalow, or to a Home suitable for ALS people. ---- [ als.thebruce.net ]