Falling and pride

[scaredwifetx]

Over the past week, Steve has had four falls. He did not tell me about the 1st two. I found out two days later. He didn't want Mike to tell me as he knew I would get upset. This morning, after I left for work he fell two more times.

He and his brother were supposed to go to a study appointment. They never made it. I got an email showing a reschedule and called him to find out why he rescheduled.

Long story shortened, he took his last walk today. He is now using the wheelchair that we have had for months. The injuries this week piled up. A very bruised toe, two dinged up knees, a dinged up back and he hit his head. Each time he fell, Mike had to get him up. Mike has a bad back and I have to go to work each day.

I know how hard it was for Steve to give up walking. He felt that once he got in the chair he would never get out. Today he figured out...that not only is he risking injuries to himself... he is also risking injuring us.

I was so mad and upset on the way home tonight but managed to pull it together before going in to the house. We talked and we cried...over another loss. We talked about the changes that we need to make moving forward.

It's so hard trying to keep your PALS safe while at the same time, not pushing them to accept the changes... before they are ready. This damn disease sucks. Trying to find a silver lining is so hard at times.

 

[affected]

It really is just so hard.

That's where I feel that CALS doing the anticipatory planning and having things there in advance is so important ... when it is balanced with letting your PALS make their decisions.

When he decided it was time to stop risking everyone, you had the equipment there ready.

I hope he quickly finds that he has more energy for enjoying other things. Even more, I hope he finds that he actually has more freedom, and that a silver lining is therefore found xxx

 

[scaredwifetx]

Thank you Tillie. You always make so much sense that its hard not to find the silver lining. I have always been a few steps ahead of the disease but only because of wonderful people like you on this forum.

 

[swalker]

I know where both of you are coming from.

But, I agree with Tillie. Once he starts using the wheelchair regularly he may find that he has his freedom restored.

I remember rolling along the boardwalks of the upper geyser basin in Yellowstone. My wife was chasing after me, but I was somehow going faster than she could walk (hmmm, I wonder how that happened. While she was hastening along, a woman caught up with her and told her she knew just how my wife felt. Her husband had recently passed away from Parkinson's. He used a power wheelchair and she was very used to trying to keep up with him.

This woman was a wealth of information for both of us. She was a true gem.

So, get ready to start chasing him. It will be great fun for both of you!

Steve

 

[lgelb]

Deb, I'm glad he saw the light before a serious injury. It is definitely a new chapter and a loss for both of you, but hopefully less worry about the next fall.

Best,
Laurie

 

[Raymiss]

I am so sorry for your experience and have had similar with my Father. Giving up the attempt to continue walking to save self from further injury/falls. This disease is relentless and can certainly whittle away at one's spirit quickly. I will be sending good juju your way for the strength to push on.

 

[affected]

SteveW you have always been such an inspiration to me the way you approached your PWC and the things you have done since

 

[tripete]

Maybe its not PRIDE but just wanting to be a human and live with some kind of a life.

 

[soonerwife]

So sorry Deb and Steve! ALS truly sucks! I am so glad he wasn't seriously injured.

 

[avnl]

Deb,
I can relate. M switched to a chair full time this month, help in the house at night 3 times a week, and is trying to get his head around a lift. I am a bit balking at the lift, a large medical device that will hover over our room. No way to disguise it, unless it becomes my new clothes hanger. Such losses and changes. I will not miss the struggles of M's walking, taking 20 minutes to go 20 feet hunched over his walker. The dreaded falls. This forward planning is relentless. So onward to making a new normal in the face of a horrible disease

 

[scaredwifetx]

Thanks everyone. The first day is behind us and just like worth everything else...we will get through it. Steve has been wonderful through all of this and does his best to stay positive. I must admit...I was concerned the first couple of months.

SteveW, I am amazed with your outlook and love reading your posts. I often resd them to Steve.

Pete, maybe pride is not a good word to use but coukd not think of a better word for it. I completely understand what you are saying. I was just as upset as him at the loss. He is still human...with faster legs.

Hopefully...we stay awhile in this chapter before heading into the next.

 

[azgirl]

Sorry sorry sorry about the falls, Deb. The pwc will give so much more freedom and safety but it was tough to accept for sure.

 

[bigmark1954]

This all hits close to home for me. I am fighting for my independence and cannot walk safely without a cane. My walking with a cane has become dangerous. I know I should absolutely be using my walker. I fall often and always get dinged up.

Pride and fear of being in a wheel chair or using a walker is constant. I feel like I would be giving up. Pride sucks...................

 

[Narrowminded]

Scared - DH fought using the cane, finally gave in. Then had a really nasty fall with the cane, one where I watched happen, could not get to him fast enough and I thought for sure he broke his neck. He ended up with 2 black teeth, but no other injuries. The next day he started with the walker and then easily moved to the PWC. I think that fall scared the stew out of him enough that he thought twice about testing the waters again when he started to feel unstable.

Mark - I know it's hard, but for safetys sake, I sure hope you decide to use the walker. I know you feel like you are giving up some independence or whatever, but whomever your CALS is, they will thank you greatly for releiving a bit of their worry.

Hugs,

Sue

 

[preacherman]

Maybe its not PRIDE but just wanting to be a human and live with some kind of a life.

Agree with Pete here... too many times I see, "too proud to use.... whatever".
Too many times people rush to judge motives.

Perhaps the Pals just want to hold on to a bit of normalcy only to fail and then be told, "Pride..."