WellsRuby

Ruby,
Sounds like those muscles are being affected...Rog has lost another 15 pounds from atrophying muscles... This never ends!

Jen

We had a really nice visit when my dad was home. He has gotten alot weaker though in his arms now and his fingers are now crippling up and its harder for him to grasp things. He still is able to eat on his own but it takes a long time and wears him out. Several neighbors made goodies for him such as homemade icecream. He had tons of visitors. I got a birthday cake for him since he will turn 78 on the 11th. Dad hopes to move back home and has a friend who is 55 who has agreed to move in with him and be his full-time care-giver if he does. He has been a caretaker in the past and has lost of experience and is also strong. But, we don't have a ALS clinic here so dad is still thinking over all his options. How are things going for you? Hope you have a nice weekend. Kim

hello mam, I read your comment about my post on one of member's visitor message wall where you indicated that you couldn't understand my agenda whether I am asking for donation or advocating to help others. First of all my language is not english & I am not good at it. I may not have expressed my feelings or arguments properly & it became confusing to you. I apologize for my part of weakness.

I am just trying to say that how difficult it is to face ALS under financial problem. It is my personal experience & I strongly believe that lots of people suffering same way. Many organizations spend huge amount of money for welfare of ALS patients but they ignore to help most needy people who are unable to fulfill basic needs because of this cruel disease. They desperately need direct financial help, so they can survive to wait for cure & fight ALS. I have been facing this disease under very difficult financial situation & I know its consequences. I have written for people like me & myself too.

I try not to bend my weight baring leg when walking. It gives out on me if I do. I always use my rollator when walking and sometimes fall even with my rollator when I don't have my AFOs on. Now days I'm using my power wheelchair around the house and my rollator very carefully only in the bathroom. I believe your husband needs to swallow his pride and get a walker. Not saying he needs to use it right away but just have it near. He's going to take a tumble sooner or later. I've taken many. I just hope he doesn't hurt himself too badly. It's all about adapting when we lose something. Pride can be dangerous. Hang in there Ruby!

Well, I've heard of people thinking of getting braces for the upper leg but I don't see how practical they'd be and I don't know if they did or not. The muscle is failing so how is he going to lift all that? I use my rollator and power wheelchair because I don't want to fall again. I've fallen too many times with minimal damage but I'm very short and small. A bigger person taking a fall can hurt themselves badly or even kill themselves. It happens a lot. I don't recommend an upper leg brace but he might consult his Physical Therapist to see what she/he thinks. What aids does he use to walk and stand?

Aren't grand kids great??? I love spoiling Maddie and sending her home...she's a happy toddler which tells me we didn't do so badly with her mother...we wondered for a few years as Melissa made some really crappy decisions, she's a great mom!

I do feel much better today as we were able to talk about our fears; he was afraid I'd find him too much to handle and he'd have to go into a care facility which isn't going to happen and I'm grieving like we all are. Once the words were out, the weight lifted and we could plan for future needs... Slept like a log last night... Whooo, glad that's over!

Hope you have a good day!

Jen

Wow! I had a pity party that started at 2 am today and I couldn't shake it until about 2 this afternoon! I am wiped....I know remember why I limit myself to 15 minutes....full scale immersion is tiring...and I look like s@#$ for the rest of the day..lol...You're right, we could envy every one else but that accomplishes nothing....I do have a good life and we are still in love with each other. He still makes me laugh and we have fun together. Your co-worker's time will come and you will have amazing empathy and advice.

Thanks for posting, I don't feel so alone!
Jen

2nd note: More about me: I will be married to my husband on Sept 11th for 19 years. We have twins (boy/girl) who will turn 15 on the 19th and then our youngest son is 8. I have been a switchboard operator at our local hospital for the past 23 years. I love dogs and we have a beyond spoiled male Puggle (beagle/pug) named Skipper. Write when you have time and tell me about yourself. Take care! Kim

Hi! How are things going for you? I am looking forward to see my dad who has ALS this Labor Day weekend. He has been living with my sister and family in Dallas for several months and has been going to a ALS Clinic there. His home is actually in Illinois near us. But, our town is small and we don't have the resources to provide care for him like they do in Texas. I miss him so much. My brother has his 30th class reunion this weekend and is driving dad home for a visit. My mother passed away in '97 on colon cancer. My dad was her main caretaker.

I think we live in parallel worlds, I too was better at first, now I cry at the drop of a hat on some days... I too hate seeing Rog get weaker, we all understand...not exactly how we thought life would be, is it? I do better if I live in the moment...

Jen

Go for it and make those memories. I'm glad I did!

Jen

I'd say get the chair now! Rog is going through the VA but if he wasn't, I'd have gotten it as soon as I could. Rog is losing strength pretty quickly. Were you going to cobra your benefits? Keep me posted!!

Jen

My pleasure! Let me know if icanbe of assistance Dear One! We're all in this together.

My speach is beginning to slur too...just a little when I'm tired.

I agree. None of us knows what our futures hold or how long we'll last so we might as well enjoy each other and as much as we can! It's nice to meet you!