Not THE Chair!

[notgivnup]

I am trying to keep my sense of humor here. But needed to share, (dont do that very often).

Had neuro doc appointment today..very difficult..my wonderful daughter in law took me, yeah!...well..He is ordering me a power wheelchair....I dont think I am prepared mentally but my body sure is....I can not get them in sync with each other, the mind and the body...My mind says go...go...go..but the body just keeps saying HUH?

I dont know the process of obtaining one, (I dont think he does either) He said he would check into things and give me a call this week when he sets everything up...What happens now, I am sooo clueless. How did any of you feel when you knew this had to be?

Also I am being referred back to pulmonologist for consideration for Bi-pap....

Oh happy days! So ok this means I cant stay in the state od "Denial"...beautiful country here. I'm thinkin things are really changing...sigh....

 

[Miss]

My husband thought that we were just ordering the PWC ahead of time. When he got it, he LOVED it. It completely freed him. He could take off without help. He could go where he wanted. He could "wander" off in a store.

As for the BiPap, it made him feel better. It let his diaphram rest. It stopped the rapid fire decline in his pulmonary scores (Pulse and Blood O2, FVC, etc.) He still only uses it regularly at night, but occassionally he'll use it during the day. See if your doctor will order the Trilogy. That can be ordered even if you haven't had significant decline, and Medicare will kick in.

 

[Georgia Peach]

Diane
We have an appointment with the pulmonary doctor today. Hope she orders the BiPap for my husband. He's had two episodes of having trouble breathing already and he had exercise induced asthma before we even had heard of ALS.

When the VA said they would order the power chair one month ago, I thought it was too early now we wish it was here. He is only getting fitted for it on August 2nd and then I figure it will take two months to deliver. Very little walking going on in hot lanta.

 

[EGBAR]

I have been thinking about his a lot lately as my legs are feeling very heavy and my walking is being affected by it. I just cant seem to walk like I use to. I think that when we start to look at a PWC we really need to look at what is important. Does it have a cup holder? I mean if I am going to be independent and on the move I may want an adult beverage. Maybe a small cooler attached too for refills, just a thought. Hope it all goes fine Diane.

 

[Miss]

One word EGBAR - Camelbak.

When you can't do that, spouse or friend with a strong, steady arm . . .

 

[jeffro]

Hey Diane
I think your Neuro Dr. should write you Rx. for power chair then have to be fitted by Physical Therapist and Assistive Technolgy Professional, And
make sure they are faimalar with ALS. Make sure chair reclines and back lays back,also get elevate option,you only get 1 chair every 5 yrs. with Medicre so don''t get cheapo,Also TRilogy for Bipap thats what ALSA recomends .Contact them ALSA about loaner chair and specs. before getting your own.
JEFFRO

 

[HelenL]

Missy, I was going to suggest the Camebak too! You beat me to it... guess great minds work alike. Either that, or a bungi cord for that cooler.

I think if you're feeling that you can't walk to where you want to go, then its time to get the chair (or scooter) to FREE yourself! I don't have a chair yet, but am getting a regular one so I can push myself around the house (currently using a combination of cane and office chair on wheels). But I LOVE my scooter which I've broken and am now awaiting for a part to come in for repair... can't wait to get it back to go out for may daily "walks" with my dog. Didn't realize how much I've missed the time outside just going around the house until I started doing it again. I also need to get a lift to get it into my van when I want to go to the mall... funny how Walmart and Target have scooters, but I don't recall seeing them at the malls.

 

[susanf]

I dread the day too Diane. I guess it's will come in the future for me too. When I get mine I'm going to bling it out. Flashing lights and all

 

[Ladyinn]

Diane, I too have found that the state of denial is beautiful. I look at it as a mini vacation! I go back and forth from the state of reality to the country of denial and after each visit to the land of denial I have found that I spend less time there and more time in the real world.

I have a power wheelchair sitting in my garage and my brain says it is there "when I need it. " At the same time my body is saying --, now now now! I think that my problem is the fact that my arms have been frozen for quite some time yet if someone places my hands on my walker I feel that I am still independent. However, it is becoming more and more difficult to move from one place to another without help so it is probably time that my body out rules my head.

No matter how much we want to live in that place of denial we know deep down that we are dreaming and trying to be in control. In reality, once we adapt and let go, life can be good in every state, after all we are not ALS we are still the same people we were before.

Hey, who knows, maybe I'll see you in the state of denial, and we can sit down and visit a spell in our powered chairs!

Hugs , filled with smiles, giggles and love.

 

[smwelder]

for me the chair guy - rep got script he came to my house to take a mesurement of me for chair. he also toook a loook around house for chairaccess. i had to remove the little inside dooor frame dooor stop on sides leave top on. you willl find a new sence of fredom having chair

 

[tmasters]

Diane,

Yes it is traumatic but you will love your newfound independence when you get your PWC. It really is liberating!

JEFFRO's advice is spot on for steps to take. I have the elevate option too and it really helps for transferring, but Medicare doesn't pay for it as it's not deemed "medically necessary". So you have to pay the $1000 for it out-of-pocket.

In my case, after doctor's referral, I had an appointment with a Physical Therapist to do a wheelchair assessment. The PT was at the assessment with the PWC vendor. There were a couple chair model samples at the meeting for me to try.

Hope you get your wheels soon. Mine took 3 months.

-Tom

 

[tomby]

Diane,
I'm all about getting things in place before the need is critical. Get your chair and bipap as soon as you can, they will be a big help.
I like the camelback idea, but can you use it for coffee?

 

[MArcaya]

Diane. Good morning everyone, I have been symptomatic since 2003. I am currently paralyzes in ankles and no longer do I walk, I have had a scooter for 2 years and I loved it. It was a shock to be this young and not be able to do all of the things I was able to do like walking and dancing. But eventually safety comes first before vanity. I have gotten now a PWC. The script was written by my doctor, I has to get on the phone myself a couple of time to check on the status but I received a beautiful PWC from the scooter store (I do not know if I can say this here) but my medicare paid for it in full. I had a study done and I was also fitted. The store did a financial evaluation and I qualifies took me less than 2 months to have my beautiful chair. The problems is it is too heavy and my care taker can put it in the car when I go places but I still thankful. So look forward not backwards. Good luck to you and thanks.

 

[notgivnup]

Wow, Thanks everybody for all your support. Great ideas too (wink> EGBAR)..lol

Thank you all for clueing me on the process to get it also, I had no idea.

I had no idea it takes so long to get either. Living on a little island I'm thinkin they will get me a generic one or I will have to take a possible trip to Oahu to see specialists there, which they should have there to fit me for one. That will give me more time to adjust, and I hope I will love it as much you guys say. I love the bling idea or better yet have my mechanical son pimp my ride

Hey this means no more AFO's right, I can just sit there and look pretty...lol.... oh and I dont have to worry if my butt is getting fat...

 

[Ms. Pie]

Diane, are you in contact with your local ALSA? They can be very helpful with these matters. I'm right there with you Lady Poo!