panguinjen

Hello Jen,
We are still waiting for first appointments to see people after Clive's diagnosis. I am looking for an ALS group, the MND nurse should be able to tell me that if she ever gets back to me. Clive is still saying no to things, but did agree to accept respiratory machines so they were in the house if he wanted try them.
Got to ask...what are nos ey cups?? I guess my support would be you great people here...and I have four grown up kids, two boys, two girls, all in on it and willing to help me with whatever. We all live within ten minutes of each other. But when the time comes, when I really need help to care for him, I will use the services available but I haven't thought that far yet. It still doesn't quite seem real, probably because Clive is still mobile, albeit painfully slow and stiff. I see him struggling on with food and drink, his quantities are shrinking because he's getting so tired. And still he is refusing other means. What's a girl to do...eh?

Panguinjen - you may have seen a few of my posts from time to time (I'll jump into that Come to Tea, soon . But, from the Tea thread I see you just went on a cruise! Yea! A group of girls and I are going on one in the next month. We're excited. Where did you guys go? We're going Bahamas - big thing for me was to 'go now' while I have all mobility (arms and legs - but left arm is very weak and left leg has AFO!) and the big thing for them was affordability. So, destination wasn't important, but Bahamas looks fun now that we have it booked. Husband and I are toying with Alaska or Hawaii later this year. Any problems for your husband that will help me prepare? My AFO works well so I'm not too worried about walking (I won't go on long walks at the ports - but browsing in town should be okay for me). Am worried about the small shower and the eating - but they'll always have 'something' I can eat (peanut butter is out for me and anything that has 'thick' slices of bread).

I am sure but a few days at home and everyone will be rested up, so glad it was well worth it, that is all that matters!

Hi Jen,
Are you back from your trip now? How was it? My dad is coming home this coming Monday, July 9th for around a 12 day visit. The ALS specialist in Dallas did confirm that dad does have ALS. My dad is looking into his Veteran benefits and is planning on trying Ritulek and is going to be participating in some clinical trials. He wants to move back home but we still have to work that out. So, we are taking it one day at a time. Hope all is well with you and Roger. Hugs, Kim

Welcome home. Hope it was wonderful!

Jen,
Missing you. I know you're not missing us. Hoping the travels are going well. Safe journey home, too.
Toto

Thanks Jen, I did have a happy birthday, kinda. My wife and I got married on my birthday 38 years ago and sometimes my birthday and our anniversary fall on father's day too.
Brother Rock

I was sorry to hear about your troubles with your health company and all. Wish I could help. Loved the new pics you posted. She is a little doll. Tell Roger Happy Father's Day for me. Take care Jen. You are doing a great job helping Roger. Enjoy your trip! You more then deserve it.

Hi Jen,
I am so happy that you and Roger get to go on this cruise. Take plenty of pictures and I want to here all about it when you get back. My dad had his appointment with a ALS specialist on Tuesday. He was there from 12:30- 8:00. My family was beyond impressed with him. He said my dad has symptoms of ALS but doesn't meet all the criteria. He said he wants to rule out some other causes first before confirming the diagnosis. He says it will take about two weeks. He did a brain scan on him which was a test the other Dr's never did.

s

Thank you for the birthday good wishes; I'm hoping this will work because I seem to be very good at sending messages into the cyber void, never to be seen again!

Hope you and Roger are doing well. My dad see's the specialist for the first time tomorrow. Hope it goes well. Anxious to get another opinion but yet kind of afraid of what they might say too. I had my 46th birthday Saturday. I went to the St. Louis zoo, a Cardinal game, and then out to eat. It was fun. My dad is doing pretty good in Dallas but he misses his home. Take care! Kim

Hey--David is kind of the TOP DOG on the site. He rarely posts--but he's the boss man. There are no other mods now to allow posts when they are moderated since we lost Al and Richard

Thanks, I know they are overwhelmed....I don't want to add to their grief, but it's adding to their work load!

Jen

Hi Jen, your post got moderated again! David runs the site for us, he'd be the guy to ask about it...though I'm sure it's just a glitch in the system. And I'm sure he's overwhelmed with Al being gone. Go to the first memorial for Al, and David is the guy who wrote it.

Jen, are all your messages being moderated? If so, send David an email to see what's wrong, as it shouldn't be.