OT - Anybody been through the changes of becoming paraplegic

Dad's out at Mayo. He has a primary colorectal tumor that has gotten so large that it has engulfed the spine at the level of the sacrum. This is his second bout with colorectal cancer. His first was 16 years ago, and it is NOT felt that this is a met, but it is unknown if it is a reoccurance or new cancer. On initial visit to Mayo, surgery wouldn't even meet with him, but after his case went in front of the tumor board, they have changed their tune. The news now is much of what I was expecting. If he becomes a surgical candidate, the two day multi-specialty surgery will very likely leave him a paraplegic. His initial reaction was to start crying, and then shortly after picked up his head and said "I've got a four year old granddaughter that I want to see grow up, if this is the way it is, I'll figure it out". It's the first time I've known him to have that much fight this time around. The first knocked him back pretty bad, with multiple complications and quite a few surgical revisions since.

As it is, the doctors have already told him that due to the involvement of this tumor in his spine, they are surprised he has the mobility he does.

I've already quit my job to help out as much as I can, switched my life back to selling on Ebay and making my own products so I can have a flexible schedule. I'm just now looking around the house going "holy shit"...realizing all of the changes that would have to be made if we make it to the surgery. (dependent upon the success of the chemo)

The biggest challenge in my eyes is the emotional transition, and mom has already said that he'll start seeing a therapist soon to actually come to terms with the changes he has experienced, and will have to experience.

Mom is tired, and doesn't know how much she can handle...which is very understandable given what he's been through already, with her at his side.

I'm a listen and think, and think, and analyze and research...and I found out yesterday, so I'm bouncing back through all the stages. I'm just curious if any of you have faced something similar, as I'm curious what the biggest challenges you faced were.

My family has not personally been through that but there are a host of organizations, both public and private, that provide support for those with spinal cord injuries and their families. There is no need to go through this alone and I strongly urge you to take advantage of their knowledge and experience. They would certainly know about the tremendous strain on relatives and caregivers.

I'm so sorry to hear about your dad. I have never been through this first hand but I have seen plenty of it. As a disabled Viet Nam veteran myself, I volunteer time at the local VA here. I did the same thing 50 years ago as a "candy striper" during summers when I was in school. I know a lot of people at the VA that have successfully come to grips with their condition. I know this sounds kind of harsh but they really don't have a choice. Most if not all have not given up. They laugh, enjoy life just as others do. I think your dad has a strong will to carry on for his granddaughter. This is very important. People who don't have the will to live or a reason for being seem to wither and die. He has my best wishes.

Oh I know...and Mayo is amazing in that regard, for helping you find support. I'm more curious about the personal experience. One of the things that my dad has had a hard time with is the loss of his ability to "work". To do a lot of household repairs that most of us take for granted...lots of stuff.

I am a registered nurse and yes "am" aware of what is up the road. As stated - best to find local help / support. BEST thing
I could tell you is find time to get OUTSIDE / MOTHERNATURE when at all possible. You and the person in question. Nothing else can compare. period.

Does he like to fish?

Well this isn't exactly relevant. 14 months ago I was in a nasty accident. This left me with a shattered femur, and a leg that didn't work. The biggest hurtle I found was arm strength. I still had one leg to help with the burden, but I was surprised how much energy it takes to move around.

As to the emotional side. I can't say much I woke up realized what happened and thought "well this is life, now what". I can't imagine how it would be to know ahead of time.

Thru this I was lucky as it wasn't permanent. Eventually the bone healed an I am now still building back muscle.

I hope everything works out well for your dad and the rest of the family.

Thanks Guys...I had already thought of the arm strength, and I think I'll talk to him about it. I think the exercise will help him release stress as well.

I spent 6 months in a wheelchair as a kid, so I've got a pretty good taste of the changes...but I was also a kid...and the permanence factor wasn't there.

And yes, he likes to fish. We have a vacation property on a lake up north, and I would have no problems making the changes to that property as well as the boat, etc, for him to be almost entirely independent up there...down here, much more challenging. I'm hoping that through this we are able to keep that property...as it's not protected within a trust, so it depends on how much care he needs.

I also need to meet with a lawyer and get stuff set up...mostly for myself at this point. Last time around, this motivated my parents to set up their will and such, but their lawyer was a fucking moron, and scared them away from trusts.

There is nothing like a disaster for someone else to put your own life problems into perspective. Thats sad but true. I am sorry to hear about your dad's, and your family's unfortunate turn of events. It seems like you are becoming the strength of your family glue now, I wish you all the best and God bless all of you.
Ron

Porschefix said:

There is nothing like a disaster for someone else to put your own life problems into perspective. Thats sad but true. I am sorry to hear about your dad's, and your family's unfortunate turn of events. It seems like you are becoming the strength of your family glue now, I wish you all the best and God bless all of you.
Ron

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Naa, that's still mom...I'm just trying to keep her load small enough that she doesn't lose all of her hair in the process.

Just a quick suggestion.

Try living in your dads house for 24 hours using a wheelchair.

It will give you a good idea of what needs to change first.


Regards,
Alonzo

My Ex wifes brain tumor

I was her primary care giver. I watched pretty helplessly as her quality of life declined, tried to keep a positive attitude for her, and for me. I was angry, some with her, even though it felt so totally inappropriate. A lot of anger with customers and friends, I didn't understand that they could not identify. My daughter blames me for her death, we don't talk much now. 4 months of this and I was near the end of my wits, and she died. I know that this is extreme hopefully your prognosis is much better. I am really glad to have had that time with her. It healed our relationship immensely, she forgave me for my sins and I felt that she finally understood who I really was. It also gave me an opportunity to be reminded what a fine human being she was.

My Dad is in his 80's pretty healthy we have been working together on one of his cars. We went road tripping and picked up a CNC milling machine. Some of the time together was frustrating. He has gotten more careless in his older age. I have to tell myself, "this may be the last time we do these things together" other wise I'd revert to being 20 all over again and criticize everything he does. My advise for the experiences I've had is be true to your self, and don't be afraid to ask for help when you need it.

Tim

Wow! I'm really sorry to hear this, you and your dad will be in my thoughts and prayers. The Mayo Clinic is a pretty damn good place, so I'm sure they know what they're talking about and have the best surgeons around. Maybe you'll experience a miracle, they still occur.

On another note, my wife wants a bidet (a toilet that cleans your butt). I was just researching them and was reading reviews on them. Lots of people with health problems have found a bidet to be very beneficial when it comes to personal hygiene. It helps preserve their dignity when they need assistance using the bathroom, and I'm sure it would help your father.

Please keep up updated as this progresses.

I've been in a chair since 1998. Widen the doors, build a big shower, make it easy to go outside. Full size vans are nice. I just bought a used OATS bus w/lift. I'm 62 & go to work about every day. Watch for pressure sores. Good wheelchair cushions are a must. A good care giver is worth their weight in gold. The first few years are the hardest but tell him to hang in there. I am fortunate to own my own business with lots of concrete to drive on & great employees to help. All that said, I type with one finger because my hands don't work But, I've seen lots worse than me. Good luck & God Bless.

Center for independent living is supposed to be good. I think they have branches in other states. (see link below) Get ADA rules for wheel chair clearances ramp slopes etc to give you ideas. Make sure all faucets/showers have anti-scald valves.
Do think like a machinist for some solutions. A gantry crane with electric trolley and hoist over the bed works well to get in and out of the chair/bed. Get a real gantry and reuse it latter in the shop and think of dad every timer you use it. Probably cost less then the official hospital type ones.
My mother had a shower with a small rubber lip to drive over to get in no real curb to step over.
Local special ed school here has ceiling mounted barn rail system in most of the building to move kids around without so much heavy lifting.
Build a bridge crane to cover a therapy pool.
Bill D.

Resources | Center for Independent Living, Inc.

Prism Medical | Square 4-Post Tier System for Safe Patient Transfers

snowman said:

Dad's out at Mayo. He has a primary colorectal tumor that has gotten so large that it has engulfed the spine at the level of the sacrum. This is his second bout with colorectal cancer. His first was 16 years ago, and it is NOT felt that this is a met, but it is unknown if it is a reoccurance or new cancer. On initial visit to Mayo, surgery wouldn't even meet with him, but after his case went in front of the tumor board, they have changed their tune. The news now is much of what I was expecting. If he becomes a surgical candidate, the two day multi-specialty surgery will very likely leave him a paraplegic. His initial reaction was to start crying, and then shortly after picked up his head and said "I've got a four year old granddaughter that I want to see grow up, if this is the way it is, I'll figure it out". It's the first time I've known him to have that much fight this time around. The first knocked him back pretty bad, with multiple complications and quite a few surgical revisions since.

As it is, the doctors have already told him that due to the involvement of this tumor in his spine, they are surprised he has the mobility he does.

I've already quit my job to help out as much as I can, switched my life back to selling on Ebay and making my own products so I can have a flexible schedule. I'm just now looking around the house going "holy shit"...realizing all of the changes that would have to be made if we make it to the surgery. (dependent upon the success of the chemo)

The biggest challenge in my eyes is the emotional transition, and mom has already said that he'll start seeing a therapist soon to actually come to terms with the changes he has experienced, and will have to experience.

Mom is tired, and doesn't know how much she can handle...which is very understandable given what he's been through already, with her at his side.

I'm a listen and think, and think, and analyze and research...and I found out yesterday, so I'm bouncing back through all the stages. I'm just curious if any of you have faced something similar, as I'm curious what the biggest challenges you faced were.

Click to expand...

I think youre right. The psychological side is where the greatest challenges will likely be, possibly for all. Focus on keeping your head right, youll be good for those around you. Putting yourself into a wheelchair for 24hr sounds like a great suggestion on the practical side.

From what you said, itd be no crime for mum to catch some therapy too, possibly together.

“Life is 10 percent what happens to you and ninety percent how you respond to it.” This gets more true for me by the day.

All the best man

Have him get on Facebook and join a group for people with his problems. I'm there are multiple paraplegic groups and others for his type of cancer. Facebook groups can be a huge help for medical problems. 10's, 100's or 1000's of people like him that have been though it or are going through it. A lot of people don't realize how useful facebook can be for this type of thing.

lmao...yesterday I told him that 90% of this fight is in his head. I am worried about him in that regard. John's statement about the facebook groups is a prime example. Dad has been asked to share his struggles over the past sixteen years, and attend support groups as an example of someone who got thru...but wants nothing to do with them. I personally think he's ashamed of the changes to his body, and has never accepted the changes or the restrictions put upon him. That's the hard part for me, because I know that I cant make or machine or otherwise fix that for him. Up until now I've wanted to spend more time with him, actually talking, but it's been hard to actually get up here. Lots of changes in my life that are taking too much time. I'm finally in the clear though with no job.

Honestly...making it to the point where a wheelchair is a necessity is a huge deal. Tim's statement about time together is very true, and the prognosis right now isn't great. Getting the tumor to shrink enough so that they can successfully cut is still going to be a challenge. Mayo won't cut if it doesn't have curative intent.

I'm pretty familiar with ADA...and I've done quite a few mobility access projects for other people. I actually really really enjoy that work. Actually made an entirely portable low step height staircase system for a 5th wheel. A couple bought one to enjoy retirement, then the wife had a stroke. In order for her to get in to it, she basically had to crawl up the stairs. I made it so it completely disassembled in to pieces that were no heavier than about 6 lbs...and aesthetically pleasing...and at a complete and utter loss. Boss quoted $150 then complained that I took too long. lol

I am completely unfamiliar with the transportation though, so I will need to be doing some research.

Power chairs, or mobility scooters, are a godsend. My Dad had a scooter the last five years of his life, as emphysema took away his ability, first to walk, later to stand at all. One of his great joys was riding the nature path in the forest preserve next to the facility where he lived; he did so daily. Make sure there is a way he can just drive out of the house.

While Dad could still transfer with help, so I just carried the scooter on longer trips on a rack on the back of my truck, the scooter repair place used a full size cargo van... really easy to open the side door, drop a short ramp, and drive right in, especially if parked next to a curb. A window van with a side door should work as well. To carry the chair with him in it is going to require some sophisticated hold downs, but nothing people on this list can't manage.

Dennis

Paraplegic

I have Spina Bifida and have struggled all my life with braces etc. but managed to keep working until 5 years ago. I was a machinist in the aircraft industry and I totally loved it. However I got permanently disabled 5 years ago and now ride a mobility scooter.
In the first month I thought ‘Woe is me what am I going to do?’ Within 1 month I was so busy and enjoying all this free time that I thought “Yippee I don’t have to go to work” lol
There is nothing I can do about the disability except make the best of it. It turns out I am now making a life instead of a living.
It is actually a blessing in that I now ‘take time to smell the flowers’ so to speak. Had this not happened I would have worked until retirement to start living.
The best thing I did was get a hobby. I have a small lathe in my apartment. Still machining, lots to do.
I have a mobility scooter and go out every day to the park etc.
My friend who is in her 30’s became a qudrapalegic about 5 years ago and is one of the happiest people I have ever met. She goes everywhere, gets people to help her and presses elevator buttons with a stick she holds in her mouth.
Attitude is everything.