Nikki J

Thanks Nikki.

Nikki-

Thanks. I got and responded. These forums are so helpful for feeling not so alone. Jennifer

Hi Nikki-

Here's an email to use als.samsmom at yahoo .com. I'd appreciate any insight into assisted living or nursing homes. thank you so much! Jennifer

Hi Nikki. Thank you so much for responding to my other post. I'm new to the site and I don't see a way to private message you. If there was an assisted living facility or nursing home in the greater Boston area that you were even somewhat satisfied with, I'd be so appreciative if you could share the name with me. Thank you.

Jennifer

Hey Nicki, I can't remember, but I remember reading from somewhere that 15% of ALS onset do not start w/ classic limb weakness or tongue weakness, but either something like 7% fasiculations, and the rest is diaphragm, paraspinal muscles, trouble clearing throat and that sort of thing. The classic numbers are 75% limb and 25% bulbar, but there is just more to the story than that. This is just from memory so please don't quote or even give much advance thought to this. I have significant ALS anxiety and no real symptoms other than fasiculations, throat clearing, and back pain so of course that's why my anxious mind veers down the "rare onset" of symptoms.

Hi Nikki, hope you are having a good weekend,pouring with rain here . stay well! Anne

I am on the ALSTUN (ALS treat us now) steering committee, we invite you
to ask us for more information.
tell us if you’d like to join one of our teleconference calls.
help us help you.
http://treatalsnow.org/
e-mail address is
[email protected]
or
[email protected]
best to you,
Ed

Hi Nikki, how are you? I'm not too good, was at an engagement party on Saturday which was great, I fell going up the stairs on my way home there are 4 flights to contend with leading up to my flat! So sick of living here and housing providers dragging their heels! Soon won't be able to get out at all , thanks for messaging me, Anne xx

Thanks Nikki. I am gripped in fear. Seeing the ALS specialist tomorrow. Afraid to take the news all over again. How do I accept it? Face it?

Thanks so much, Nikki. Yes, I certainly understand about the private message. My email address is: [email protected].

I see that Dr. Jeffrey Rothstein is the top guy there. I think they're going to request him, since he's doing so much research. Some of the posts here say he doesn't have the greatest bed side manner, which concerns me given all they've been through already. I'd like to find out all I can to try and prepare them the best I can.

Thanks, once again, for your help and kindness!

Gratefully,
Lynn

Thanks so much, Nikki. Would you mind telling me more about your sister's experience at JH, e.g. if the neurologist (or an intern) did the exam, how long the neurologist spent with her, if he mentioned the research they're doing, how long ago she was seen there,etc.? My brother/sister-in-law are leaning towards JH for the second opinion, and I just want to help them have realistic expectations going in and not get their hopes up too high (only to be let down, once again).

So glad your sister is getting good care at MGH. Wish it was closer for my brother/sister-in-law. I imagine, if the diagnosis is confirmed, they'll find a more local ALS clinic for treatment.

Thanks a million for your kindness,
Lynn

Hi Nikki,
Just dropped by to wish you a Happy Easter. Take care, Kim

Hi Nikki, I'm not so good, stuck in the house because of the stairs there are 48 stairs so you can imagine the struggle, it's really getting me down, trying to get a suitable house from the council but it's taking forever!! I hope you are doing well ? Love and hugs Anne xx

Hi NikkiJ, how are you? I'm okay, thought hanginon's post was terrible, we all understand he's still grieving but he really should think in future about his replies!! I'm not gonna let anyone scare me away. It's been fantastic to get so many lovely replies Before i joined the forum I was pretty stuck and had no one i could talk to who really understood my thoughts, now i have all you guys and I'm so thankful for that!! Love and hugs, Anne xx

Hi ! How are things going for you? My dad is doing so-so. His speech is still good most of the time unless he gets tired. He is still able to eat and has a good appetite. His arms have very little strength and he has trouble picking things up because he lost the use of most of his fingers and they are curved under. He is basically confined to a wheelchair to get around. He can take a few steps with his walker and someone directly behind him holding on to his gait belt. Hope things are going okay for you. Take care, Kim