CALS Roll Call Continued

[affected]

I'm so glad you posted too Deb.

How do we tell anyone the depth of the devastation? There is no way to do that, only we truly get it and understand it. I'm glad you are back and posting.

Don't think about how will you go after, somehow we limp along, leave that for later xx

I'm kind of glad I had all the distraction of the flood relief work I've been doing. It's easter now, Chris passed away the Tuesday after easter, so I get 2 anniversaries every year as the dates are never the same but I can't help but remember what it was like as he went into actively dying on the easter Friday. At least I was so worked off my feet all week I didn't get the usual lead up stuff.

So much you are all going through, so much loss, grief, anger and what we witness. You are all amazing people in a situation I wish no one ever had to experience. Please do keep opening up here, it truly does help xxx

 

[sunandsea]

Checking in but very late. I can relate to so much of what has been said. Deb, it's good to hear from you again. Everyone here understands and that is comforting.
For us - things are quiet but the disease marches on. My RA is giving me a really difficult time so trying to be careful. Just very tired and very sore. Increasing some meds so that should help. It's amazing how much strength is needed, even with lifts and slings. Or I wonder if I am doing something wrong.

I miss hearing my husband's voice - it has now become just a whisper. I don't think he understands what is happening to his body and I struggle with knowing and how to talk to him about it. He looks at me at times with this confusion and it breaks my heart. I'm also wondering if I am prepared - in a practical sense and just emotionally.

Looking forward to family together tomorrow and the distraction that small children can bring. Wishing everyone some peace in the next few days.

 

[Aussiemndcarer]

Checking in to say hello to you all. It's been a busy Easter here,and life is marching ahead ,pulling me along. I have just read your posts and I send a huge hug to you all. I wish I could wrap my arms around you and your Pals and give you strength as you travel along this ALS journey. I can relate to your feelings of anger,emptiness ,and complete hopelessness at times. If you are lucky enough to have a therapist or close friend who can listen to your concerns then I am happy for you. For me, I find this forum so helpful,and truly therapeutic at times. I actually met up with another forum member recently. It was so good to meet with her pals as well. If only we didn't live over 2 hours apart!! We talked constantly for over two hours. So much to share! I am surrounded by loving family and children who care deeply and are also mending from watching their Dad fight ALS. Even with all this love, I feel so empty. Thanks for those who post. I'm sure your strength ( even on bad days) will get you through.

 

[Narrowminded]

Aussie - its so good to "see" you. I've been wondering how you were doing. Hang in there and Hugs!

Sue

 

[scaredwifetx]

Aussie, I am so glad you posted. I think of you often. I am glad you are surrounded by a loving family.

 

[Gembead]

Hi Aussie, it was lovely to catch up with you, our Easter was busy with 12 extra family staying over the Easter break, BJ now has a bipap machine we now just have to learn how to use it, his voice is getting weaker and more laboured, but he continues to smile thru it all, so proud of my man and love him to bits. Love to all the CALS

 

[Ceelea]

Checking in here. So much has happened since diagnosis just 4 weeks ago. Mom and I keep asking if we're seeing progression or just noticing things more now, but the truth is that she is able to do less every day. She tires so quickly that even a walk around the back yard does her in for the rest of the day She can't turn over in bed now without difficulty (new since Friday) and her hands are less functional than they were.. we're not even trying to get the bra on. Things aren't sad, it's just a daily experience of less than the day before.

I've put in a call for her to the clinic nurse coordinator at UVa, we've notified the long term health care insurance folks and are trying to get the stair lift people to call back. We are both in the moment, but the moment is pretty danged surreal. Stamping my foot on the back porch and speaking obscenities continues to work as therapy of a sort! Glad you all are here.

Cee

 

[soonerwife]

Sorry to hear of daily losses Cee.

It's Wednesday again...

I wish I could find motivation. Ugh!

PALS legs were too shakey to go to the mailbox yesterday. Pwc is supposed to be delivered by the end of next week.

How long does it normally take to get a hoyer lift? That's my next thing to get.

I ordered a ramp for the back patio which should be delivered today.

Going to a baseball game as a team building event with my work group this afternoon. Hopefully that will be fun.

I hope everyone is doing well!

 

[Buckhorn]

Hello all. First and foremost, I want you to all know how much I appreciate you all and think about you all very often. I don't post too much anymore because I want to be helpful, and most of the time I'm not sure that I can be. I want you all to know how much help and comfort you have all been to me. This is the ONE place where I know I can turn to when I need to commiserate with others who know exactly what I am going thru, and I can identify with you!

So, hubby/PALS celebrated his 70th b/day on the 13th. I sincerely did not think he would be here to celebrate this b/day. He continues with a steady decline which seems to be at the same, steady pace it has been since his diagnosis. I am very, very thankful that he is still here with me and has very minimal bulbar symptoms and no FTD signs. Still, it seems like ALS is killing ME along with him, and I feel so helpless and have had episodes of shortness of patience lately. I have thoughts that I am not particularly proud of ...... (wondering if it is better for both of us if he passes sooner rather than later, wondering how long this will last, if I will be strong enough, etc). At any rate, I love my PALS/husband and am glad that he is still with me, but at the same time I am often consumed by thoughts regarding whether I am up to the task .......

Thinking of you all, sending you all a big, collective hug, and wishing you all strength! Blessings to you all!

 

[lgelb]

Sooner,
Are you going through insurance [note: they may not reimburse fully for a power lift] to get the Hoyer, or getting a loaner, or buying one? I recall you are using a private plan, not part B?

That would help answer the timing question. I would start by seeing if ALSA has a loaner for you, if you haven't as yet.

 

[soonerwife]

I hadn't thought about that Laurie. I was thinking I would go through insurance. I think I need to start checking into all the options. What kind of hoyer do I need?

Buckhorn, it is easy for your mind to wander into places that seem unkind. I think we all do it. I think that this disease takes such a toll on us as well as our PALS. It is so difficult to watch our PALS suffer and decline and there are so many losses. The thoughts we have seem selfish but in reality I believe it is compassion for our PALS. I would never want to watch my PALS suffer... on the other hand, I would never want to lose him either.

 

[vltsra]

Dear Buckhorn, we hear you. ALS affects both CALS and PALS in such a profound way. With my husband's slow progression I feel like we will have ALS hanging over our lives for years and years to come. I wonder if I will have the stamina to deal with a decade or more of caregiving. I have often said it would be easier if I had ALS rather than him.

Things are pretty much the same here. I am taking on more and more of the duties here including dealing with repairs on our home for the future when we need to sell. My husband does not want to talk about it...but our house is full of stairs. He is putting his hopes on a naturopathic doctor; I hate to see him spend hundreds of dollars on something that won't do anything to help him but also don't want to destroy his hopes. He is still working although his hand is useless. He told me he probably will never surf again or ride his bike. It all makes me feel so sad.

V

 

[Jrzygrl]

Buckhorn and vltsra - I am right there with you. The hanging dread over where this disease will lead us. I am also sometimes short on patience and wonder if I am up to the caregiving. My husband had a bad day yesterday. Very weak all day. He seemed to perk up a little bit when we went to our son's baseball game. But then at night, it got worse. He woke up at 3 AM with terrible back pain. Tried every which way to get him adjusted in bed to help. Finally, he decided he wanted to sleep in his wheelchair. I can usually help him up from bed, but he was too weak. Out came the hoyer and I bumbled through getting him into the chair and settled again. (We got a new sling, prescribed by the OT and admittedly, I need to practice with it.) The whole episode had me up until around 5. I am exhausted today. Hoping for a good night's sleep for both of us tonight.

Trying to keep the glass half full. Peace.

 

[scaredwifetx]

Missed you Buckhorn. I get it. I stopped posting for the same reason but we all need each other. My heart breaks each time I read of the struggles here. I feel a knowing sadness. I don't know how I would have made it without all of you.

I just don't understand why so much heartbreak has entered my world the last two years. Steve's and Mike's father has been in the hospital for 17 days and isn't getting any better. We dont think he had very long left. Mike is here helping with Steve, Steve doesn't have the strength to fly to Spokane Washington. The situation sucks. I have to work, means Mike needs to be here and their father is dying. Than goodness the youngest brother is there to help and be at the hospital.

Last year, I lost my mother in my home, lost my 16 year old dog and Steve is getting worse by the day. Losing his hand usage, losing the ability to get up off the wheelchair and he now struggles for each breathe. We are strong and together in this house...but dang it...i am tired mentally right now. I feel so sorey for both Mike and Steve. They also list their mother to brain cancer. Not being with their father is tough.

Take care of yourself everyone. May your problems be few this week. Know, that I am so grateful to have everyone here.

 

[lgelb]

Sooner, there are two basic kinds of floor lifts (you definitely need a powered one, not manual). One kind costs more because it's portable -- folds to take on trips. The other isn't and costs ~$1,000 for the basics. Examples here, just one of many sites.