Brain Tumor Walk, Rob's balance issue questions

First I wanted to let everyone know that the Race for Hope, Phila., for the National Brain Tumor Assoc. raised over $700,000 with 5,000 or so participants on the 5 kil. walk and run.  Rob's Mob, our team walking in support of my husband Rob, of course, raised $4,100 and had 17 walkers. I was so surprised by all the support.  It was so heartwarming, yet sad to see all those friends, families and survivors having to deal with the nightmare of a disease with no cure in sight. Rob was anxious to do this walk.  I was a bit worried since he just completed his 4th. day of 11 days of stereotactic rad. for the 2nd. time on yet another new tumor.  He has been doing so well since his dx 12/08, no steriods since right afte surgery. -UNTIL now.  The NR wanted him to start 4 mg. twice daily on the 1st. day of rad this time as his balance was a bit off.  Rob hates it so we just cut the pills in half and he was doing 2 mg. twice daily.  During the walk  I noticed his right leg dragging somewhat and then his whole right side was crooked.  I was afraid he had a stroke.  He was insistant that he was just tired after the 3 1/2 mile walk.  We went to brunch with our family and friends that walked and he seemed to be better.  Got home at took 4 mg. of dex. in bed now and he is still dragging his leg a bit.  OMG this is too scarey, I hear about it here all the time and now here it is-happening.  Foolish of me but I as somehow hoping he'd escape this part.  He has his 5th. treatment tomorrow and is scheduled to see the NR Tuesday.  I 'll see what happens but I  think that this is when the Dr. just say to increase the dex.  Is that there answer to balance issues?  I hope I know when to do what, it is all so much.  Somehow although his memory is pretty bad, and he gets confused and overwhelmed-this physical type deficit will really hit him hard, my heart just breaks. 

Donna, Rob's wife

So sorry for you both. My husband also diagnosed 12/08.  No new growth as of two weeks ago.  He has not had the leg dragging, but he has light seizures if he is not taking Keppra 750mg one daily. He is not on steroids any longer. My husband does have problem with his balance and if he is really tired it is worse.  He also has tremors at times, legs and arms.  He is on Temador 380mg 5 days on  23 off.

Donna, it is the sort of thing that just strikes fear into your heart. Please, let this not be the beginning of the end. Let this be something that can be fixed. Please please please. I know what you mean about how it will hit him hard. I feel like Andy's skills, liberties and rights are being stripped away one by one. This totally bites.

Hope it's better after some rest.

Love, Sarah

p.s. WAY TO GO on the walk! Really cool. :o)

Hey, all the power to him. If he can walk that distance without falling down or without assistance, he's as mentally strong as an ox. I have some gait issues and can't get down a grocery store aisle without holding onto a carriage. Some of it is poor vision I've been told. I'm straining so hard to see that my braingoes into overload (which it does easily). I wish I had a solution. The only suggestion I can offer is the use of a can when necessary. He won't like that--neither do I--but it affords me some stability when I have to walk long distances and that gives me a little more independence. I sincerely hope the rads work and you can keep the dex dosage down. And congrats on the fundraising effort.

Sorry, I meant CANE, of course, not can. Don't think a can would help much.

Hello Donna,

That is wonderful there was so much money raised during the walk. I know there is not as much money directed towards brain cancer unless there is a specific event like this, great job.

I'm glad to hear that Rob was able to do the walk, that says a lot. Not everyone fighting this battle would be able to do that. Hopefully the balance issue was just fatigue, I'm sure he was exhausted. I know that will definitely affect ones balance, I am hoping that is all it is.

Please keep us posted, we are here for you!

Take care,

Lori

Hi Donna,

I saw your posting on Gary's carepages and am so sorry to hear of what's happening with Rob.  I can only imagine the fear you must be feeling not knowing what's causing these issues.  He sounds like he's stubborn like my husband and doesn't want to increase the decadron but it's possible he may need to give in and do it.

Let us know what happens at the docs -- hoping it's just a temporary issue.

P.S. Sorry we didn't get to meet on the walk but between our to teams we raised $8,600 -- we should be proud!

Jennifer

cp:garyvoliner

My husband began having issues dragging his rt. leg in Sept.  It continued to worsen, and the docs. put him on decadron.  When balance issues presented along with increased weakness, we had an MRI which indicated bad progression.  I'm so scared.  He can not get around now without complete assistance.  It's so hard to watch b/c he has always been so active and independent.  Now he depends solely on me or the children to get him around the house.  I just don't know what's to come, but I fear the worst.