Johnny Update

[Valya]

Hello all. I thought some of you might be interested in an update on Johnny's medical. For those of you who are new, Johnny is my son, DX with ALS in Dec, 2008. He turned 19 this month.

All things considered...He's doing well.

His hands continue to atrophy, losing strength and fine motor control. His writing is slowing and becoming sloppy, he's having trouble dressing on occasion, can't change out the drill bit without assistance, etc. Everyday difficulties such as these are becoming more frequent. :sad:

This is new: He's noticed his going up/down stairs, getting up from crouch, running is starting to feel different. He trips once in a while now. His gait has changed, more akward, less smooth. :sad:

Speech, swallowing, breathing, is fine. :razz:

He's participating in a clinic trial for Talampanel, out of Forbes Norris. This is about his 5th week or so. So far, no side effects. Dr. Katz at Forbes Norris lowed his Rilutek back to 100mg, from the 200mg recommended by Dr. Rothstein at Johns Hopkins. Those are the only meds he's currently taking.

Mentally, he's just amazing. He still doesn't want to talk much about the ALS. He likes to keep busy. He has his job two days a week. On his off days, he and his dad are working on constructing a P-38 flight simulator, complete with real WW2 instruments (Ebay aquired) from WW2 aircraft, P-38s, P51 Mustangs, etc. No, they will not be actually working, they are just for the effect to go with his 3, 22" computer monitors. The metal plate is ready for painting, then the instruments can be installed. It's quite a project, but since he can't get his pilots license now, it's the next best thing.

His other project is hot sauce, haha. He ordered hot sauce from a speciality store, love it the hotter the better, and decided to start from the ground up, so to speak. He now has at least 75 - 100 chili pepper seedlings growning in his 'greenhouse' bedroom, including the 'hottest chili plant on earth'. He's planning on paying his brother to prepare a spot to plant the seedlings, lol, possibly selling some of his harvest at the local farmers market and making salsa and other hot dishes.

We've had an encouraging experience at Forbes Norris ALS Research Center. Wonderful staff, everyone is so helpful and go out of their way for him. Yesterday, he and my husband went there for his regular clinic study visit and Dr. Katz said there was a neurological convention right now and he was certain there would be a breakthrough in ALS research very soon, perhaps within the next 2 years. Hopefully, his comments weren't just 'feel good' comments.

I still have days where it's so incredibly hard and I cry all day behind the scenes but those are getting less and less. I fell apart at the grocery store last week, when the cashier picked up the bag with all my diabetic sons perscription meds and Johnny's and said.. Valya! What is all this? Emotionally, it wasn't a good day for me to begin with, and I lost it, could NOT stop the wave of tears and the 17 year old bagger just stands there, asking me if I want paper or plastic.. haha it's funny now.

As bad as this is, at least we still have him with us. Not all parents are so lucky. I treasure every moment with him and we will deal with the future as it comes.

I sincerely hope everyone is doing well. Hugs to everyone and take care

Valya

 

[hopingforcure]

Valya,
Bless your heart. I read all of your post's with the most sincere interest.
I know I speak for all of us on the board, when I tell you that everyone of us is involved emotionally with your family. We all here care deeply about you and your family.
I am so glad to hear that so to speak Johnny is doing OK.. he and you, continue to have my heart. I was aware that the Neuro convention was this week, and I to was thinking we might hear some good news, glad you got the same info.
I could just see the bagger, asking about the paper or plastic, I have been in that place. I had to laugh out loud, sure cannot choose when we get tough moment's and goodness you sure were entitled to have one.
Please keep us posted, and check in whenever you have a moment. Sending you a huge hug.

 

[Zaphoon]

Valya,

I've been wondering how all have been doing. Thank you for the update.

Zaphoon

 

[sharonca]

Valya - good to hear from you. I've been wondering. Also did you ever finish the video? If so I'd love to see it. Sounds like your sweet boys are keeping on with their lives. Let us know when the salsa is ready for purchase!

Sharonca

 

[thelma313]

Valya, what a fantastic mom you are! Your kids are very lucky to have you. I just think you are handling your situation with such courage and an amazingly positive attitude. As Hoping said, all of us on the forum who have followed Johnny's story are emotionally attached to you and your family. Johnny just sounds like such a great kid! I love that he is so into hot sauce now and that he is growing the hottest chili plant on Earth in his room! I certainly hope that Dr. Katz is right and that there is a breakthrough soon.

Thanks for the update. I'm sorry that you are going through any of this but keep up the positive attitude. It is the best medicine.

 

[Valya]

Thank you all for your warmth, kindness and love. I feel it oozing through the computer monitor even. Sooo many 'hearts' here.. :-D

Hoping- yes the bagger was the cheerleader type, hugh perky smile, totally oblivious to my distress. Even as I very unsucessfully choked back tears, there was a part of me watching it all and laughing. So funny.

Thelma-I'm not a fantasitic mom, so much I should do differently but I do try. Johnny is such an honestly good kid, he makes it easy.

Sharonca-I'm still working on the video, it's coming along. This entire experience is so uncharted. Now with two children with serious illnesses, our lives and emotions have been tossed with a fury I have never experienced and was totally unprepared for. A LOT of 'things' got put on hold while the emotions were sorted, including the video, srry to say. But honestly, the shock is over, I'm coming out of it and am looking forward. Whatever happens, we will take care of Johnny and love him every second. It was extremely difficult to let go but I've finally faced and accepted that our entire family dynamic, focus and priority has changed. This means I'm able to face whatever is coming with a clear head, not over come with mourning for the loss of the path we expected our lives and our family as a unit to tread. I don't know if that makes sense or sounds lame...

Zaphoon-You are awesome and I love thinking about Gumby :lol: Somedays, I've wished I could go into a book and just goof off with Pokey.

Thanks to everyone. Hang in there, cause Dr. Katz is SURE there is a breakthrough on the horizon

Valya

 

[rocmg]

Ooh Valya... thanks so much for your update on your son. I'm glad that he is continuing to do the things that he enjoys -- hey, that hot sauce idea is amazing. it made me smile!

i think i feel the same as you do right now... kind of emerging from the shock of the diagnosis, looking forward. One of the msot heartbreaking things I've heard my mum say is that she doesn't have a future. And it's hard to counsel anyone about stuff like that, so often we just cry because there's literally nothing else we can do. then we have a cup of tea and take the dogs for a walk. bizarre, terrifying moments of emotion sliced with totally normal, mundane things. that's our "new normal." i don't much like it, but we gotta roll with it -- and hope that Dr. Katz is right about that breakthrough!

 

[Zaphoon]

Hey, throw a little cheese in with the tea and the walkies for the dog and you have "Wallace and Grommit".

 

[Al]

Hi Valya, thanks for the update. I make my own hot dill pickles (well Lee does now) Like my hot sauces too. When they get the simulator done can you post pictures. I used to fly and love that stuff too. Thanks.

AL.

 

[laurel]

Hi Valya,
I often think about you and Johnny and your whole family. Thank you for taking the time to fill us in on how things have been. I laughed reading the hot sauce comments as I too am a hot sauce lover and I'm always searching for the best and hottest hot sauce. Like Al mentioned it would be nice to see the simulator photos. My husband is a retired Air Canada pilot (couldn't manipulate the toggle switches anymore due to hand atrophy from his CIDP), and hubby would enjoy the pictures too. I can only try to imagine the tremendous grief that must come in waves and overwhelm you. Johnny is in my prayers along with you and your family.
Laurel

 

[brendapals]

Valya,
So good to hear from you! Sounds like you're "settling" in some with Johnny's diagnosed maybe? Like I've said many times-it kinda becomes a "new normal"-at least it does for us. Hopefully he's on a smooth course right now and you guys can enjoy the springtime!

Rest when you can, and yes, laughter is the very best medicine!
hugs,
brenda

 

[lydia]

Valya,

I was really touched to hear your latest update, and that you have found the strength and focus to move forward with your "new normal".

Lydia

 

[crystalkk]

Valya,

Thank you for keeping us updated. You are a fantastic mother (please don't doubt yourself) that is probably why Johnny is such a great kid.
I'm Happy to here that Johnny is still continuing to do what he enjoys.

 

[rose]

Valya,

You continue to amaze me in the strength you show. Your entire family is truly blessed to have you.

I enjoyed reading about Johnny's hot pepper adventure! My grandfather (we lived in Miami) grew Habanero peppers. He kept some in vinegar in a little cruet by the table near his chair at the table, and also some dried ones. I can remember him taking great pleasure in asking unsuspecting guests if they'd like a pepper from his garden ~ this was way back when I was a kid, and before any sort of hot pepper entered the average person's diet in AnyTown USA He'd get all sorts of reactions, from people bolting from the table and drinking directly from the kitchen sink faucet, to those who sat there with sweat pouring off of them, but trying to be casual about it.

It is encouraging to read how you guys are adapting. I hope you're able to work on that video!

Don't forget to take time for yourself. ( ( H U G S ) )

 

[Valya]

New Normal

Ah yes, the 'New Normal'. I like that expression, thanks.

Rose, I enjoyed your hot chili story. Johnny does the same thing and it's a scream to watch and hard to pretend we don't know what's really going on. He's thinned out his seedlings and now has about 50 of various varieties of chiles. Some are planted here, and some at his grandparents house. They seem to grow slowly and he's getting bit bored as he waits for the chilis. I'm going to the grocery store later today and will pick up a few chilis, then I'll 'attach' them onto a few of his plants, just for fun. :razz:

If I don't get called away from the computer, I'll upload a few of the pics of the P38 instrument panel. It's still in progress and the entire simulator keeps getting bigger and bigger. Now the discussion centers around how to make it disassembleable (is that a word?) to take it to shows, etc.
:shock:

We're just so glad he is excited about something, it keeps him positive and interested in the future.

Hope everyone is having a good weekend