Suz, Isn't tomorrow the appointment?
- Thread starter DDD
- Start date
smallworld
Moderator
Holding a positive thought for Rob tomorrow. And hugs to you, Suz.
DammitJanet
Well-Known Member
Wow DDD, you are impressive with keeping up with appts! I think I will just tell you when all my appts are and you can notify me..lol.
Suz...tell Rob our good thoughts are going out to him!
Suz...tell Rob our good thoughts are going out to him!
rejectedmom
New Member
Praying for good news. -RM
Suz
(the future) MRS. GERE
I liked this neurologist a lot. He was very no-nonsense and didn't mince words or give us false hope.
He confirmed that Rob's vision problems were probably permanent in this current state, which is compromised with double vision in all directions except when he's looking straight ahead. The neuro-ophthalmologist basically said the same thing two weeks ago. It would be "better" if Rob had double vision in all directions because then they could do surgery or make prism glasses to help. As it is, Rob will probably have to live with it as is. When he looks down, if he cocks his head in a certain way, he can see ok for a narrow area but the neuro-ophthal said that will probably cause longterm damage to his neck. Great. Not.
This neuro wants me to call the neuro-ophthal to see if anyone would consider trying prism bifocals. He's not optimistic and neither am I but it can't hurt to ask.
He said that Rob's memory and cognitive skills should hopefully continue to improve, although slowly. He gave Rob a prescription for a "cocktail" of Depakote and Prozac to help his moods, headaches, depression, lack of interest in doing anything productive, and rages (I found out about the rages today). These are all very typical behaviors with brain injuries and he has seen this mix be very helpful. I hope so.
He said that Rob's left bicep is permanently shot, caused by nerve damage which then causes the muscle to atrophy and die. His left shoulder is lower than the right one now. There is no PT or Occupational Therapist (OT) that will rejuvenate either. Rob needs to exercise his arm so that his tricep and other muscles can help pick up the slack but his arm/shoulder will always be weak overall.
He said Rob's days as a roofer or any kind of physical/construction job like it are over. I asked about vocational rehab and he recommended a place that I will research.
Rob is not a student and never has been. School was torture for him. Finding a new direction for his future will be a challenge. The doctor told him to "man up" and go to school and learn a new career. We'll see.
We were relieved to have someone be honest with us. He's going to send me a copy of his evaluation since I couldn't write "left 4th nerve palsy" and "left brachial flexopathy" and the other things he was tossing into his dictaphone fast enough.
He told Rob that he is lucky to be alive. He said his accident should have made him a quadriplegic at the least, death probable. Even that blunt, I still don't think the seriousness of it sunk in for Rob.
Provided the medication helps with some of the other issues, he wants to see Rob in two months.
I expect I will cry about this later since I have a huge lump in my throat now.
Suz
He confirmed that Rob's vision problems were probably permanent in this current state, which is compromised with double vision in all directions except when he's looking straight ahead. The neuro-ophthalmologist basically said the same thing two weeks ago. It would be "better" if Rob had double vision in all directions because then they could do surgery or make prism glasses to help. As it is, Rob will probably have to live with it as is. When he looks down, if he cocks his head in a certain way, he can see ok for a narrow area but the neuro-ophthal said that will probably cause longterm damage to his neck. Great. Not.
This neuro wants me to call the neuro-ophthal to see if anyone would consider trying prism bifocals. He's not optimistic and neither am I but it can't hurt to ask.
He said that Rob's memory and cognitive skills should hopefully continue to improve, although slowly. He gave Rob a prescription for a "cocktail" of Depakote and Prozac to help his moods, headaches, depression, lack of interest in doing anything productive, and rages (I found out about the rages today). These are all very typical behaviors with brain injuries and he has seen this mix be very helpful. I hope so.
He said that Rob's left bicep is permanently shot, caused by nerve damage which then causes the muscle to atrophy and die. His left shoulder is lower than the right one now. There is no PT or Occupational Therapist (OT) that will rejuvenate either. Rob needs to exercise his arm so that his tricep and other muscles can help pick up the slack but his arm/shoulder will always be weak overall.
He said Rob's days as a roofer or any kind of physical/construction job like it are over. I asked about vocational rehab and he recommended a place that I will research.
Rob is not a student and never has been. School was torture for him. Finding a new direction for his future will be a challenge. The doctor told him to "man up" and go to school and learn a new career. We'll see.
We were relieved to have someone be honest with us. He's going to send me a copy of his evaluation since I couldn't write "left 4th nerve palsy" and "left brachial flexopathy" and the other things he was tossing into his dictaphone fast enough.
He told Rob that he is lucky to be alive. He said his accident should have made him a quadriplegic at the least, death probable. Even that blunt, I still don't think the seriousness of it sunk in for Rob.
Provided the medication helps with some of the other issues, he wants to see Rob in two months.
I expect I will cry about this later since I have a huge lump in my throat now.
Suz
Oh, Suz... what an awful lot to digest.
It must've been very reassuring to have the doctor say that he's seen the medication combo help in Traumatic Brain Injury (TBI) patients. In a way, it's reassuring too to have someone just lay it all out, as difficult as it is to hear. I trust docs who say "yes", "no", or "I don't know" a whole lot more than the ones who say "wait and see".
Cognitive and memory improvement, even slowly, is good. Did Rob seem amenable to taking medications?
I can't even begin to imagine how hard it would be for Rob, or anyone in his situation, to grasp how lucky he is. He's probably not feeling terribly lucky - but it's all relative.
Had to chuckle a bit at the "man up" bit - did neuro realize he was talking to a former difficult child?
Sigh... I really *hate* that Rob has new challenges to conquer, Suz.
How's his girlfriend holding up?
I'm truly truly sorry your beloved boy is going thru this, and I wish I could soothe your heart. He, and you, have been in my thoughts so frequently, and will continue to be there.
It must've been very reassuring to have the doctor say that he's seen the medication combo help in Traumatic Brain Injury (TBI) patients. In a way, it's reassuring too to have someone just lay it all out, as difficult as it is to hear. I trust docs who say "yes", "no", or "I don't know" a whole lot more than the ones who say "wait and see".
Cognitive and memory improvement, even slowly, is good. Did Rob seem amenable to taking medications?
I can't even begin to imagine how hard it would be for Rob, or anyone in his situation, to grasp how lucky he is. He's probably not feeling terribly lucky - but it's all relative.
Had to chuckle a bit at the "man up" bit - did neuro realize he was talking to a former difficult child?
Sigh... I really *hate* that Rob has new challenges to conquer, Suz. How's his girlfriend holding up?
I'm truly truly sorry your beloved boy is going thru this, and I wish I could soothe your heart. He, and you, have been in my thoughts so frequently, and will continue to be there.
Suz
(the future) MRS. GERE
Thanks, Sue.
We all chuckled at the "man up" comment- even Rob. It's the same ole he can give lip service to "man up" but he won't even study for his driver's test that he has to re-take to get his license back since it was revoked from the accident. So if he won't do that, how's he going to go back to school and be successful?
Shades of PTSD for me from his old school days, that's for sure.
Heather is wonderful. She is a "half full" person. I hope she is in it for the long haul and that he doesn't abuse her too much in the meantime with his moods and rages. He needs a partner like her.
Suz
We all chuckled at the "man up" comment- even Rob. It's the same ole he can give lip service to "man up" but he won't even study for his driver's test that he has to re-take to get his license back since it was revoked from the accident. So if he won't do that, how's he going to go back to school and be successful?
Shades of PTSD for me from his old school days, that's for sure.
Heather is wonderful. She is a "half full" person. I hope she is in it for the long haul and that he doesn't abuse her too much in the meantime with his moods and rages. He needs a partner like her.
Suz
DammitJanet
Well-Known Member
Ugh. I really hate to hear this too. I am not surprised to hear it but I hate to hear it even so.
Get those medical records and attempt to start the disability process. With all you know about the extreme unlikelihood of Rob being able to retrain in another career, I would think that disability is the way to go. To be completely frank here, with the cognitive problems plus his earlier learning problems, I think any type of formal schooling or training is just going to be a bust. I dont think I could even attempt formal college right now and I am well past my difficult child days! My injury wasnt half what Robs was.
Im not comparing kids but this is where we sort of stand with Cory. He is somewhat better emotionally with the bipolar and could probably do ok working in construction with that but now his physical disabilities are so bad that he can hardly lift anything anymore. And there is no way on earth he can retrain. He cant even get his GED for heavens sake. Sigh.
What to do.
I hope you can find a way to overcome this but its going to be hard. It breaks my heart for Rob and for you.
Get those medical records and attempt to start the disability process. With all you know about the extreme unlikelihood of Rob being able to retrain in another career, I would think that disability is the way to go. To be completely frank here, with the cognitive problems plus his earlier learning problems, I think any type of formal schooling or training is just going to be a bust. I dont think I could even attempt formal college right now and I am well past my difficult child days! My injury wasnt half what Robs was.
Im not comparing kids but this is where we sort of stand with Cory. He is somewhat better emotionally with the bipolar and could probably do ok working in construction with that but now his physical disabilities are so bad that he can hardly lift anything anymore. And there is no way on earth he can retrain. He cant even get his GED for heavens sake. Sigh.
What to do.
I hope you can find a way to overcome this but its going to be hard. It breaks my heart for Rob and for you.
donna723
Well-Known Member
Well, Suz, at least he was honest with you and told it like it is, and it's very encouraging that he said that some things will improve with time. I hope Rob will cooperate and do everything he is supposed to do and hopefully the medications will help. And the girlfriend sounds like a real keeper!
The doctor is right when he said Rob was very lucky to be as well off as he is! I have a friend at work whose son was in a very similar accident and he's been in a nursing home for a year and a half! He's only in his early thirties. They are slowly realizing that he may never improve to the point where he can come home. Some days he's 'there' and some days he isn't and he still has many seizures. In the year and a half since it happened there were only a few times that the doctors allowed him to go home for an overnight visit and then he had to come right back the next day. So, all things considered, Rob is incredibly lucky to be doing as well as he is but I know how difficult and how frustrating it must be for him. Sending lots of hugs for him ... and for you.
The doctor is right when he said Rob was very lucky to be as well off as he is! I have a friend at work whose son was in a very similar accident and he's been in a nursing home for a year and a half! He's only in his early thirties. They are slowly realizing that he may never improve to the point where he can come home. Some days he's 'there' and some days he isn't and he still has many seizures. In the year and a half since it happened there were only a few times that the doctors allowed him to go home for an overnight visit and then he had to come right back the next day. So, all things considered, Rob is incredibly lucky to be doing as well as he is but I know how difficult and how frustrating it must be for him. Sending lots of hugs for him ... and for you.
Suz
(the future) MRS. GERE
Janet, I agree. The neuro didn't get my drift and I didn't want to embarrass Rob today but I'm exploring all options at this point.
Thanks, Donna. You are singing to the choir- I completely agree. I've told Rob from the get-go how lucky he is. Today he was telling me how he's turned into a "mean drunk" and I'm responding WHY ON EARTH ARE YOU STILL DRINKING- HASN'T THIS TAUGHT YOU ENOUGH? NOT ONE GOOD THING HAS HAPPENED WHEN YOU'VE HAD SOMETHING TO DRINK.
...someone, please. just shoot me.
Suz
DammitJanet
Well-Known Member
Oh geeze. Yeah he needs to stop drinking that is for sure. If for nothing else, for the baby.
