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notgivnup

Senior member
Joined
Nov 8, 2010
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833
Reason
PALS
Diagnosis
11/2010
Country
OS
State
Darkside of Moon
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country
Ok, I am here to blow some steam off. Don’t usually do this much but I am sooo TIRED of all the hoops I am having to go thru! And keep getting told go back redo that hoop or that one and the ONE..on and on and on it goes. Why is it so hard to get the equipment I need? You would think I was asking for the President’s Heart for Transplant! It has been 2 months trying to get a power chair, finally got measured, but in the month and a ½ since PT visit it has become so hard to keep sitting up so the tech for wheelchair said PT did not say to have tilt for this condition, and to just give him a call, simple enough. But no..called, they said I have to get another referral from neuro, called ..they will get back to me. Then to call PT tomorrow. Why oh why, I know I am not to ask WHY. Don’t they know this is hard enough! I am just soooo frustrated! I now feel like GivenUP! Thinking hell will freeze over before someone really has my best interest at heart.
And to add to the mix, reason neuro referred me back to Pulmo was so I could get a Bi-pap thinking it would help me, but no, he was surprised when I told him yesterday Pulmo saw no reason at this time, even with the sleeping problem, no energy, and morning headaches. Neuro says to try and get one, that means Another referral back to Pulmo who said see ya in 3 months. This is getting too hard for me to deal with, I feel like just climbing under a rock till this goes AWAY!
Will have to revert back to Denial or jump full on into humor for survival…and become the crazy lady!..If I have enough strength left!, they have Sucked the Life out of me it feels. AHHHHH! I HATE this disease! It SUCKS!
I am so tired of it ALL! Just dont want to do this any More!
Ok, DONE nuff said….:-(
 
Oh Di, I'm so sorry for all those hoops... are you seeing your neuro at an ALS clinic to make it easier? I have a feeling that you can't due to where you're living but thought I'd ask anyway. Can you call the MDA office and see if they have a social worker that can help navigate through all the BS? I haven't gone that route yet, and have to say I'm dreading it...

Sending you a hug, along with one of those brownies we were talking about earlier.
 
You know if people were competent in the first place, there wouldn't be so many hoops. Your Occupational Therapist (familiar with ALS) and your ALS Society representative, more than your PT, should have been involved with the purchase of your power wheelchair . Then you would most likely have got the tilt option recommendation right at the beginning. I'm sorry you're going through all of this. You sound very frustrated and exhausted.
 
Thanks helen and cervus....No A L S clinic here to help. No one to help it is just me. When I called PT office, she said I could not have changed so much and I should try strenthing my muscles.....I lost it on her...poor girl I feel bad but dont they get any training?, How can I strenthen them anyone know?....I CAN"T....ALL these people here are IDIOTS!
Oh and MDA...last Support meeting I went to we made SOCK PUPPETS!..Never went back!
 
I'm so sorry Diane! Wish I could come over there and help. Can you raise some he11?
 
Um...what were the sock puppets for may I ask? Wow.
 
UNBELIVEABLE!..still ranting...Just this moment got a call from PT office to tell me they got the referral from neuro to Have Physical Therapy to strenghten muscles..Did not know I could do that? Wow. So I think I will join a gym and get in shape, bring back leg muscles, foot muscles, arms. all my muscles!....then I would not need the dang chair!.........Oh and for Update on wheelchair assesment, that's good news.

Think I missed something somewhere, I dont understand how this disease works then.

Should stay under my rock....no more pity party there, hate these parties

The sock puppets, I havent got a clue!

My new Name...CLUELESS
 
LOL! Diane, you're not the one that's clueless Dear. I went to PT a few times and she kept trying to strengthen my muscles. I printed off a few things about ALS for her since she didn't bother to read up on it. She gave me a few exercises to do at home that she read on the stuff I printed for her and sent me home after I pay $40. Then calls me a couple weeks later to schedule another $40 appointment. I said that I wasn't coming back. My point is, you'd think they'd want to learn about what you're dealing with in order to know how to help you. If they cared.
 
Yeah Ms Pie, and she was the one I told off the First phone call about trying to strenghten the muscles...Boy that one went right over her head, if she even has one.

Now a FIRM believer only those with this can understand, not even the so called profesisonals, I am over them.

We should get paid to educate THEM!
 
Di....here's a link to an article written by the "chief" ALS neurologist with our ALS Clinic here in Edmonton. I sent this link to people who didn't know anything about ALS (as was the case with us when Bob was diagnosed), family members and friends and our caregiver that ended up being trained to do range of motion exercises with Bob. It's simple and gives people a general idea and some background in to the disease. This might be something you could forward to care workers that you will be dealing with in the future (and maybe present). http://www.als.ca/_media/docs/Wendy Johnston Case Conundrums.pdf

Take care......
 
In a fairer world there'd be a clinic or specialist nearby. In a fairer world you and your neuro would have a consult over Skype with a specialist. I hope things get sorted out soon.
 
Di, I'm so sorry about the incompetence. I wish we lived closer :(. Can you call or email MDA? There has to be something for pals by you.
You can rant with us anytime.
 
Thank you all so much for the encouraging words. I is nice to know there are those who care what i am feeling, even if it is bad stuff.

I Plead Tempoary Insanity

LOVE YOU ALL
 
Di I am so sorry..I wish there was more competent people out there to help..I understand what you are saying though, it is like pulling teeth!
 
I too just hate that you are having to deal with all this on top of the disease. Truthfully we have dealt with incompetent people in the area of power wheelchairs both at the VA and the ALS clinic. My husband got his first wheelchair in 1995 and has had to upgrade or replace them several times. Sometimes it went fine. Other times it didn't. When we tried to get his second one at the VA, they knew what Rick needed and what to order, but somehow the order kept getting lost somewhere between prosthetic and the wheelchair company. When it was time for the wheelchair to arrive, I called them. Than they realized the company had never got the order. After it happened twice in a row, I skipped the VA and got him one through Medicare. The next time the VA couldn't seem to get one ordered, we went through the ALS clinic. The PT there came to our house measured not only my husband but the doors and angles. We waited again while it was being built knowing this one would be just right. When it was finally delivered, the base was so long, the only way he could maneuver it into and out of the hall was to slow down as slow as he could go, and sometimes go back and forth easing around the corner a little more with each move. He hated that chair and survived in his old one until the VA actually got one. We loaned the chair to a friend, and he wasn't any better with it than my husband. They both hated it. The PTs explanation was that he had to have it built that way because of my husband's weight. My husband weighed 198 lbs. ?
We have not had problems with PTs trying to strengthen his stomach muscles, but we did have one that was sure he could get Rick walking again. He had him in leg braces strapped into a walker with some kind of arm rest things added on. Then it took 3 of us to get him up and all strapped in and help him drag his feet across a room. The therapist was so excited about the progress and instructed us to do this everyday. He was sure if we kept him practicing, his leg muscles would get stronger. Not only had he not read the book, but it's beyond me how he thought I could get him up in this thing and help him "walk" when it had been taking 3 of us to do it. It does get so frustrating.
I do feel for you. I have always handled this stuff for Rick. He used to get frustrated at me cause I couldn't get things done. I started putting the speaker phone on when I was having problems. He was totally amazed at the hoops you were talking about. I hate those hoops too. I hope you soon get the help and equipment you need.
 
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