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faithandlove

Distinguished member
Joined
May 22, 2016
Messages
174
Reason
PALS
Diagnosis
06/2016
Country
US
State
NV
City
Reno
Yesterday was a horrible day. I went to my monthly ALS meeting which went well. When we got home, I went right on the ramp on the van by accident and my PWC got stuck between the van and the ramp. I would have gone flying off it if I did not have my seatbelt on. My husband got my manual wheelchair and placed me in it, and then struggled to get the PWC off the ramp without damaging our van. The van and PWC are fine, my husband is not.

I felt horrible, and he was very angry at me. He gets me so nervous that I do everything wrong trying to get in and out of that damn van. I know I have to take my time, and I really do go slow. It just seems to get stuck and then I move in the wrong direction. The E-Z lock is on the passenger side, and it is hard to maneuver it into that lock. I'm getting better, but I go super slow.

Then we have the driving problem. My husband will wait until the last minute to put on the brakes. It scares me and my hands go uncontrollable up and down. He gets so upset with me when this happens. He just started screaming at me, and then he apologized later.

I have no control of anything anymore. I feel like a part of me is being chiseled away each day. I know that my husband is stressed too, and that is why he is so angry. He is usually very easy going, and we rarely argue, so this is new. Chalk it up to ALS that I am working hard to accept because I have no choice.

Thanks for letting me vent.

Hugs,
Deb
 
I am very sorry to read of the difficulties you are having. The only real advice I have to offer is to try to remember we are all humans dealing with an inhuman situation in the best way we can. That goes both for your husband and for you. Patience is really a virtue in these situations, though something I truly struggle with.

Sometimes I just have to close my eyes when my wife is driving...and she is actually a really good driver.

I have a lot of miles on my various wheelchairs, and I still sometimes get stuck like you did. And, when I am flustered, I simply make things worse! I suspect there is something wrong in the reflex department that causes me to have diminished fine motor control of my drive hand in such situations. My hand will start jerking and often in the wrong direction, making the situation worse. I find small elevators to be the worst place for me.

When this happens, I simply remove my hand from the joystick and take a break. That really does help. My wheelchair has 10 "speed" settings, analogous to the gears on a 10 speed bike. When things really go in the tank I select the lowest speed setting, which gives me much better fine control when my hand starts acting up.

Once the crisis is over, it is surprising how quickly my ability to control my hand returns to normal.

My fingers are pretty useless at controlling the joystick, so I don't touch it with my fingers. Instead, I place the joystick in the webbing between my thumb and index finger. This seems to give me much better control. I have carefully adjusted the position of the controller so that this is a natural and comfortable way for my hand to interface with the joystick.

Glad your van and wheelchair are OK. I am sure your husband will be also. You should see the drywall in my house...now there is something that is not OK;)

Steve
 
I believe all CALS need to get in a PWC and try all the different things in it themselves as it gives you quite an appreciation for what it is actually like to drive them.

I often used to get in Chris's one as at times it needed to be moved from here to there when he was in his recliner or bed or something and it was always good for me to have to drive it up and down ramps. They are not as easy in tight situations as it may seem, and they are very sensitive!

When there are fine motor skills in the hands, I can't even imagine how much this adds on! Get flustered, and even without ALS it becomes far more difficult to control, especially on a sloped ramp!

We were just talking recently in another thread too about the startle reflex and ALS. So yes, when you are a passenger, that hand movement is probably part of that reflex. You may not actually be in fear, but the reflex is a response to his sudden braking.

I hope he can learn to understand your side of things, and maybe you can find a way to laugh together about some of it to relieve some of the tension. You are right, both PALS and CALS are stressed, and both feel a certain lack of control, but taking it out on each other only adds to the stress.

Thanks for venting!
 
Sorry Deb, I think we all have been there. My first reaction was to say, put his a$$ in the chair and let him give it a try. The maneuver in and out of the van is not an easy thing to do.

Here is what happened one day at my house. The battery on the chair suddenly died, so my husband and caregiver put me in bed and took it down to get a new one. I was thinking about how much trouble they would have driving it and then out of the van. When they got home I heard a big crash they got the chair stuck sideways on the ramp! ever since that day they have quit telling me I am a "bad driver"

The Startle reflex you described in the car is normal for us, part of brisk reflexes I believe, and I do it all the time.
 
Deb, Steve and Tillie gave good advise and I cant give any better advice. I just wanted to give you a big virtual hug. I so wish this dang disease was not so tough on us all.

Its post like yours that show me that I need patience and to try to not let anger take over. Maybe the CALS do need to take a day in the chair. Maybe then we would laugh more often at these mistakes and or accidents.

It might also be a good idea for your husband to attend a support group or support forum. His anger is not really with you and we CALS know this.

Once again, hugs!
 
Ok deb, here's a good one!
At ALS advococy day in DC at end of the day and we were still in the tunnels under Capitol building I had to pee.
There was a men's room right there across the tunnel.
I went in by my self and quickly saw it was not really Ada as only two small stalls and two urinals. Both stalls occupied.
I use urinal carefully as I can still transfers. I sit back down and go to maneuver to get out (. I also use thumb/ finger web to drive) some how I bumped the speed up from 1 to 6 that's very slow to very fast. Haha I crash into stall # 1 door breaking door down and completely freaking the guy out that was in there!
The more I tried to correct things the worst I made them by banging into door numerous times. The guys yelling at top of his lungs, I saying " sorry,sorry " next thing I know two cops enter in to see what all the ruckus is about.
Oh yea forgot to say I was dress in wild looking clothes as a clown. Anyway the cops see me and start laughing their a$$ off! Things got straighten out the cops were cool and laughed saying we're gonna bill ya for that door, haha!
This is espically funny to me as I had been. Arrested numerous time on 12 stilts in DC @ war & enviromental demonstrations.
Deb, your not alone with any of this nightmare, guess we just have to see the humor in it whenever we can. Love ya thanks for sharing this thread. Chally
 
Chally, I think your story is way better than Matt's story of being pulled off his chair and then pushed across the men's room floor. I'm gonna share!!!

Deb, my heart breaks for all PALS--especially when it comes to being helpless in the van. My poor guy--I tend to break late also, and I can see what it does to his chair and how much it tosses him around. I keep trying to do better, but sometimes it really is another IDIOT on the road who stops even more suddenly than I. In any case, I try to think about how helpless he must feel, and when I see him clench his fists I feel terrible.

Perhaps your husband would understand your position if he were to strap himself into your chair and let someone else drive him around town for a bit (and the driver must make those abrupt stops!)

As for driven the chair---we have soooo many stories of the chair going off the ramp (to include getting stuck with one wheel over the edge of the ramp to the house). The van has as many Matt Marks as the house, and the glass on the middle window has been etched by the headrest several times.

On the other hand, he STILL makes me nervous when he watches me back a vehicle around our driveway. I do fine until he rolls out to supervise. I also still turn immediately if he tells me I'm going the wrong way, even when I'm not. I'm torn between ignoring him and dreading the day that I ignore him. Sigh.

Becky
 
Chally,

You made me laugh so hard it hurt.

While I have run into numerous stall doors, I have not yet taken one out.

My worst story is about the day I ran over my wife's feet. Fortunately, just with the back wheels (my chair is front wheel drive, so the back wheels are the caster wheels).

Steve
 
I just told my husband all your stories, and we are both laughing. This gives both of us a better understanding of why this is happening. I so appreciate your responses and funny stories. Chally, I laughed so hard, I cried. Steve, you helped a lot and we do need to practice patience with this disease. All of you helped me do a paradigm switch in my thinking through your helpful responses. Thank you!

My husband does tell me to close my eyes when he drives, and I will need to do that more often. I'm not worried about me, I'm dying, but I worry about my husband and the other driver getting hurt. Also, we were in an accident about 9 years ago because my husband went through a red light. We were in a Jeep Grand Cherokee and ended up upside down in the car. Another time, he almost went on the freeway the wrong way. If I had not said something quickly, he would have. So it is difficult for me to close my eyes, but I need him to get me out and about. And, to be honest, he is better since I got sick and we got the van. I guess I have trust issues.

I not only got my PWC stuck on the van's ramp, but, when we went to go vote, I ran over my husbands feet too. I, also, ran into an elderly woman's chair at church. I apologized afterwards and she was very gracious and kind about it, but I knew I shook her up. I think the whole congregation stopped when I did that and my daughter yelled, "Mom what are you doing?" I'm suppose to get a control that I breath into to control the PWC soon. I guess more stores of collisions will occur with that.

Again - THANK YOU for your kind, informative, and funny responses to my rant. It helped a lot.

Hugs,
Deb
 
Chally, Thank you for turning my shi##y day into one where I had a laugh. You are a super cool guy and I love reading your posts.

They are measuring me for a PWC soon. This thread needs to be printed out for future reference.

Deb, Aren't you glad you posted? God bless you.
 
Deb - So glad you are feeling better after your experience with the chair. I can understand losing control of it. My husband's chair is so powerful it scares him (and me) and he hesitates to use it. He hasn't learned to maneuver it into the van and needs assistance just to get it down the small ramp out of the house.
Chally - your story was funny! Thanks for sharing!
I know the ez lite cruiser has been discussed on the forums - can anyone share how responsive it is and how easy/difficult to control it might be? When we go out, I control the pwc or another family member does and I would love for H to be able to do it and be independent. He had a small scooter that he loved to use months ago but he can't sit comfortably in it now. I wonder if the ez lite just might be easier than the large pwc to handle and a replacement for the scooter. I can't find a dealer in the area to see it before purchasing.
Thanks for any advice, feedback! It seems silly to buy another motorized chair but it would be worth it if he could enjoy getting around on his own. (He would always have someone with him but just to control it would make him feel better, I'm sure.)
 
Chally, Thank you for turning my shi##y day into one where I had a laugh. You are a super cool guy and I love reading your posts.

They are measuring me for a PWC soon. This thread needs to be printed out for future reference.

Deb, Aren't you glad you posted? God bless you.

I am glad I posted Kim. I feel we are all in this together, and we can relate to each other through our experiences. I felt like such a clumsy, incompetent idiot before, but now that I know it has happened to others and I feel so much better.

God bless you too.
Hugs,
Deb
 
Sun and all,
If your chair is moving ahead of your inclinations, remember that the minimum and max speeds are programmable. Ask your tech to dial it up or down if/as needed.
 
Thanks, Laurie. I have it on the slowest setting but I wonder if they can make it less sensitive/responsive. I'll call tomorrow. We feel so fortunate to have it but it has more features than we need at this point and is very big and heavy. We have modified our home but it still difficult to navigate it through doorways and such. I keep thinking at some point down the road, we may need some of the things it can do. Thanks again.
 
They can definitely be made easier to use, when I got my chair the guy spent two hours with me at home watching me manouvre adjusting the configuration individually on each different speed setting. I had a lot of trouble with reverse mode so no matter what speed I am on reverse is ultra slow. The first time I tried to drive round the house was a nightmare, all the adjustments made such a difference.

Wendy x
 
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