CALS Roll Call Continued

Tc, you might not post as often as you used to but when you do its so inspirational and heart warming. Steph, I am so glad you are starting to heal and taking care of 7our son and self. It's sometimes hard to visit here for me so I can't imagine how hard it is right after the loss of your PAL. It's truly important to me just to know you are adjusting and are ok. Every post here is so important.
 
Oh my goodness Buckhorn. Close shave!! So glad all is ok. Hope all keeps going well.
 
So we are another step closer to moving in. All doors are now hung and await some paint, I finished grouting the kitchen and laundry this morning, the builder hopes to be gone by the end of the week and that just leaves the floor sanding, and then a big dust out before we move in, the light at the end of the tunnel is in sight but I can't quiet reach it yet. BJ has started to talk about using the hoist instead of standing transfers as that is becoming harder for him and a little unsafe for us both. Wishing you all a wonderful Wednesday, luv Gem
 
It's Wednesday. Having a rough week. Dr started me on meds and I could feel my heart beating in my chest. Not sure what that's about? Changed meds yesterday and feel sick this morning. Hopefully things will start looking up.
 
Hello to my CALS and PALS family. I can't believe it is June, how did that happen?? I'm getting busier with my PALS as he slowly needs more help over time. He's having difficulty getting up from the couch and chairs so I'm looking for a lift chair for him. He's been using his Tobii, getting better with it each day. Chris' speech is good so he has plenty of time to practice before he needs it for speaking. Lungs and swallowing are also doing well and he stopped coughing after he began taking prilosec twice daily. Looking at vans, trying to figure out what to get that can handle our rough roads. Those nice lowered side-entry vans will never do out here so we're looking at rear entry vehicles. I still cry all the time.....drives me crazy. I don't mind the tears; I just wish I could schedule them at more opportune times. Like when I'm NOT driving. I just found out yesterday that my dear dog Ramsey has a degenerative disease. She has weakness in her back legs and trouble moving them correctly so she wobbles a bit. The vet said it will probably be a matter of months, not years, before she can't get up at all. She's only 7. My heart is breaking. In the evenings I cuddle with the wonder hub and pup and just try to soak up all the love and give mine in return. <3 I have a pic of the 3 of us but don't know how to add it. Love to you all, Kathleen
 
Greetings:
Gembead oh you are so close to being in. Enjoy your vacation.
Sunny Sierra. My heart is sad about your pup. They are so much emotional support.
Janis hope the skin continues to improve.
Sooner wife hope you are on the mend as you read this

I am still in the midst of a rough patch with M. Suddenly his speech has taken a dive and I who speak garble am unable to understand him. He on the surface states he is interested in AIDS but just does not follow through. Initially he was going to bank his speech but could not get beyond taping that he loved me and his girls and then stopped. That was two years ago. He texted me about an iPad with text to speech generator but when I said lets go to see which size iPad and what app we needed, he shut down. I see his fear and withdrawal. He also is deteriorating in what mobility he has. Liquids have become a problem and his hands are suddenly having spasms. Oh my so many things. My mention of a Gtube is met with: we will not discuss this issue again. Denial has always been his coping mechanism and even he cannot deny how limited he is becoming. His Dad fell at the assisted living and is in a rehab as he is unable to get around though thankfully nothing is broken. That is not helping. We will equilibrate. On a good note his sister is getting married on Saturday and I have been given permission to bust M's dad out of rehab for the event. M is looking forward to the event. My garden is wonderful and so is the weather. So trying to get on the other side of our issues. And hope all have a great week. Any advice on voice apps would be appreciated.
Anna
 

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It is a very difficult place avnl. By the time my husband was willing to voice bank, he couldnt type, pick up his tablet, or record his voice because it was so weak. So very sad.
 
Hi All - things are still improving with sleep for Brian. I do believe using the Tobii is making all the difference. He now feels like he can communicate again and he's writing email etc. He's one happy camper. I'm happy to because I'm getting some sleep.

sue
 
Hi to all. I read many of your stories (catching up!) and I can identify with so many of you! Keep the faith and keep up the "fight"! Sunnysierra, I can identify with so much of your post. What DID happen to May?! Also, so very sorry about your dog! We had to have our 10 year old Golden Retriever (smartest, bestest dog I ever had) put to sleep in late Sept. With all else that was going on in our lives and the fear of the upcoming diagnosis, I barely had time to mourn my buddy's departure.
My PALS has had a progressive decline; not as fast as some folks have witnessed, but still disheartening to me. Dave can't open jars (or most of his pill bottles now) and can barely climb the 4 steps to the rear entry to our home. I will need to cattle-prod our dear but not highly ambitious neighbor to get our ramp done!! Dave gets exhausted from minimal activity, and with the recent large saddle pulmonary embolism he had, he is even more exhausted.
I received a summons for jury duty - REALLY?! ...... now?? I will contact our ALS neuro to see if I can get an exemption for that, since I am the sole care-giver for my PAL, and he has had one fall just recently. The worst thing about jury duty is that you cannot have your phone with you for the duration of your duty. So, my nerves would be SHOT if I can't communicate with my PALS and make sure he responds!!

Anna, I convinced my PALS/Dave to do voice banking with model talker. It does involve some effort/time. I am so glad he did this, as his voice is definitely weakening now and he has virtually no voice "projection". Anyway, model talker (.org) is FREE - they maintain their service via donations and grants, and they were pretty easy to use. We went to our local college so we could use a "quiet room" and their internet service.

So many others out there that I have to catch up on your stories and lives. Please know I am thinking about so many of you!! What a wonderful resource this website and forum is for us to catch up with and communicate with each other. Love and STRENGTH wished to so many of you!!
 
I know Australia is different, but I was also called for jury duty and I filled out the exemption form and attached a copy of Chris's diagnosis. I was exempted without any problem. I'm sure there is a process and you meet the criteria for exemption!
 
Buckhorn - you can get and exemption from Jury Duty. Your phsyician will have to sign it. They will send you a form, just contact them. They sent it back saying I was exempt for 5 years.
 
My hubby uses model talker. He has done some of the recommended reading out loud but still has much to finish. He uses our walk-in closet as a quiet room. He can still walk, but not far. He has lost the use of his right arm and hand and his right leg/foot and left arm/hand is getting weaker. He has always been a chatty guy, so I encourage him to use that energy to voice bank. ;-)
 
Checking in. Out of town for work and in Tulsa so my brother in law is with Steve. Feeling tired and sad tonight so will keep this short. Steve has had many changes the past few weeks and I have a couple of questions but just to worn out emotionally to start a new thread so maybe tomorrow.

I catch up on everyone every night and want you all to know you are in my thoughts.
 
Hi Scacedwifetx. Although each of us may have a different path on this ALS journey, I can appreciate how you must feel. I was too emotionally and physically worn out to even visit the forum for about 3 weeks. My hubby continues his slow but sure slide. We are "fortunate" that Dave's ALS has not been as progressive as some people who write here about their PALS, but it has been pretty fast none the less. I predicted (to myself only) that Dave would be in a wheelchair by Sept. I am now pretty sure it will be sooner. He has great difficulty now with stairs, and he is extremely stooped when he has to walk up stairs or even negotiate a small curb. His handwriting is getting very bad, and his voice is definitely weaker. Most disturbing of all is I am certain he is having cognitive changes. In particular, his memory is affected (common with ALS?); he struggles with decision making and some word finding difficulties. Couldn't do our taxes this year for the first year ever, and misplaces things like crazy. He is sweet tempered, gracious in the face of such terrible debility and change, and expresses thanks to me very often, so I don't think it is FTD at this point.

I did place a call to the neurologist's office; am awaiting a reply and hope I will be given an form to excuse me from jury duty.

My thoughts are with all of you CALS/PALS - I'm hoping you all find some pleasure in life and are able to enjoy little diversions of happiness (a sunny day, a flower, the smile of a child .......) to bring joy to your lives, if only for a moment or two.

Blessings all!
 
I am trying to start a new thread so I can post pics of the soaps that I made in honor of Tillie's Koalas but cannot find the thread starter. I never start threads so guess I am missing it. Can someone tell me?
 
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