a little bit of good news
AnonymousFebruary 20, 2010 at 9:41 am
For the past few months Ryan has been gradually walking with a walker at PT and going a little bit further each time he goes. they even tried the forearm crutches at PT and he did very well with them.
Yesterday at physical therapy Ryan walked with a cane and then walked a little ways without holding onto anything.. it was so good seeing him do that. (oh his PT was holding his gait belt just incase he were to have started to fall)
Ryan has had one dose of cytoxan and we don’t know if cytoxan had anything to do with this or not but we are hoping for better things to come as he continues the cytoxan treatment.
The PT told Ryan no more wheelchair use in the house only when we go some where. so starting today Ryan has to use his AFO’s and walker in the house. His wheelchair is going to be left in the truck.
Rhonda (Ryan’s mom)
AnonymousFebruary 20, 2010 at 10:57 am
[FONT=”Microsoft Sans Serif”]dear rhonda and ryan– awesome news! i too got a huge boost of overall improvement with my 1st hit of cytoxan. i walked 2 hours around lake michigan the day after! know that this is predictive of a good outcome should ryan go through the program at northwestern… sophie and i return to chicago on the 24th as jim is getting hospitalized for his 17 day haul– my offer still stands, assuming there is no family that decides to fly in 😮
(we took advantage of a 1.5 week opportunity to fly home and lap of doggie saliva 😉 )
again, great news! keep me updated! i’m not on the forum very regularly– but you have my number.
AnonymousFebruary 20, 2010 at 1:30 pm
Rhonda and Ryan,
I am so encouraged to hear this news!!!! This is answer to prayer!!!!! I will continue to keep you both and your family in my prayers. I can’t WAIT for your next update telling us Ryan no longer needs even his cane!!!! You both are so special and I know Ryan will make a great comeback. 🙂
Hugs and prayers,
February 20, 2010 at 1:55 pm
Hi Rhonda and Ryan!
I’m so glad to hear such great news! My prayers are working for you.
February 20, 2010 at 5:53 pm
Rhonda and Ryan, so happy to read your great news. I do pray you’ll continue to gain muscle control and strength. PT stinks, but it helps so much. Give Ryan my encouragement.
AnonymousFebruary 20, 2010 at 6:33 pm
Thanks so much for posting such great news here on the forum. I assume you you will continue to keep us updated? I remember when I first walked at PT (after 2 1/2 years of NOT walking), how wonderful it felt, PT belt & all. I started with a walker for a few weeks, then tried the Canadian forearms crutches, & then two canes, then one cane; all in a matter of 2 months. I still use one cane when I go out alone, but just AFOs in the house. I expect Ryan to recover much better because I was 50 by then, his age in in his favor.
AnonymousFebruary 20, 2010 at 8:27 pm
I know well how hard those first steps are and then the others! May they all add up to real achievement!
It’s not easy by any means and it all costs dearly on our bodies and our minds, but IF we don’t move? We won’t MOVE!
OK Ryan, it’s up to you as to when, WHERE do I send a pair of roller skates?
And, yes, Rhonda? You mite just need a pair too to keep up with him!
Hugs and hope and as long as I’m alive? It IS a promise! And I’ll be jealous all the way ’cause I Never COULD roller skate!
AnonymousFebruary 20, 2010 at 8:34 pm
And once he gets going? Tell him He is due a pair of roller skates! My treat! Maybe a pair for you too, Rhonda, so you can keep up with him!
Hugs and heart and hope sooner than you thought!
I know it’s not ‘easy’ to re-learn how to walk, then learn to walk ‘properly’ to boot! The Process Hurts, but it can work if done right. Keep faith in the work and the effort, make your minds open to ‘differences’. They are the subtle signs of things good happening.
I’d do a ‘jig’? But I’d likely fall over doing it! So I won’t but I hope you understand the spirit offered!
February 20, 2010 at 9:03 pm
I posted well wishes on another thread that you were on, but why not post twice! Great news!
AnonymousFebruary 22, 2010 at 7:32 am
I’m crying right now with tears of joy! This is exactly what we all have been praying/wishing/thinking/supporting of for several months now. In a few weeks it’ll be warm enough to walk long the shores of Lake Michigan. I’ll certainly look towards your area with glowing smiles, for both of us!!
Keep the post coming and I’ll update mine for everyone’s benefit.
AnonymousFebruary 23, 2010 at 7:47 pm
Thank you all for your well wishes. I think alot of it is the regular PT Ryan has been getting. it really helps build up strength. Then he rest is treatment.
Ryan just got his second cytoxan treatment today so we will see how the next few weeks go.
Randy how are you doing? how many cytxan treatments have you gotten already? are yours working? are you seeing any improvements? are you still riding your snowmobile? we have gotten some more snow but we haven’t had time to go snowmobiling yet this year.
I hope you all are seeing improvements and having a good day! I will post more soon. as the next few days are going to be taking care of Ryan as they are the hardest after treatment.
AnonymousFebruary 23, 2010 at 11:02 pm
Thanks Alice. also I don’t think we are going to be able to come to Chicago at least not right now. Ryan is in the middle of midterms and he just got his chemo. hopefully once it all calms down if your still in chicago then we will come.
we would love to meet you.
AnonymousFebruary 27, 2010 at 1:08 am
well we saw one of Ryan’s doctors who is in charge of his physical therapy. He’s like a physical medicine doctor. anyways he see’s Ryan once every couple of months and we go over how he is doing in PT and we talk to him about pain and he is the one who usually writes the rx for the pain meds.
since Ryan has been in so much pain even when he takes his neurotin, ultram, cymbalata and a narcotic (can’t think of the name of it) he took ryan off the neurotin and put him on Lyrica. Ryan took it today as soon as he got the rx filled and the pain went away. I tell you he was feeling like a whole new guy. for months now nothing has touched that pain and finally he has gotten releive. so I guess he wont need the narcotic or ultram or nerotin any longer.
I hope Lyrica continues to work.
AnonymousFebruary 27, 2010 at 11:17 pm
That is so very interesting, as I was always told that Lyrica was basically the same as Neurontin, just that one had to take less pills as it was much more concentrated. When I first went on Neurontin nearly 8 years ago, it was a very pricey drug, even the co-pay was high. Then it went generic 4-5 years ago (gabapentin) & the drug company was all ready to roll out Lyrica as a much better alternative. Those on the forum who had followed all of this said that they were basically the same drug. I hadn’t heard from anyone who had seen much of a difference between the two, until Ryan that is…
AnonymousFebruary 28, 2010 at 8:55 am
Lyrica worded wonders for me for awhile … then it wasn’t as effective and my night muscle siezures started up again. But it really did help for a good amount of time. The only “side effect” I had from the Lyrica was rapid weight gain. I told my neuro he needed to staple my mouth shut so I wouldn’t be able to eat so much and he told me it wouldn’t matter, I would just rip the staples out to get the food in!!! 😮 So my only caution would be to keep lots of healthy snacks around so Ryan can eat without gaining weight … :rolleyes:
I’m so glad he’s found some relief – I never knew anything could hurt so much until I experienced nerve pain. How is his PT going? Is he still improving? How does he feel from the cytoxin?
You both and your family remain in my prayers,
AnonymousFebruary 28, 2010 at 11:42 am
I did read some reviews this morning on Lyrica & many did caution about rapid weight gain. As someone who gained 80# on steroids in 21 months (which was permanent weight gain, not just the “moom face”), be real careful about this side effect. Not fun to deal with once you get better…
AnonymousMarch 23, 2010 at 8:25 am
Ryan has had a total of 3 cytoxan treatments so far. he gets them every 3 weeks.
He has been doing so good. He walks around the house with only AFO’s no walker or wheelchair. He only uses his walker or wheelchair if we go somewhere.
Also his hand tremors are not as noticeable as they used to be. so that is decreasing as well.
It is so exciting to finally see him having some significant improvements.
PS those zapps he was getting are gone too.. now we just gave to get rid of the pain!!
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