am I crazy, I just want enjoy what's left

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The issues are definitely different when you have under-age dependent kids. LIke you, Liz, I still look fine and function fine. I have told all our grown children that I have symptoms of ALS that are not explained by any other condition but that doesn't mean I will get the disease. I qualify it by saying some folks have these symptoms for years and nothing ever develops.

Then I make plans for the worst, which is when they stop being supportive. They think I should wait until a definite DX before we sell our second home and pay off our loans and credit cards. I say by the time I get a DX I may need to be thinking of modifying the house and getting medical equipment, and what's wrong with going into retirement (If I make it) debt-free?

I am also preparing them all for the day when they will have to pitch in around here. Last night we went to a restaurant and Lee excused himself to go to the men's room. I watched him take a wrong turn coming out and I watched him go all around the restaurant to every room in the restaurant, looking for our table. When he finally found me, back at our table near the men's room, I waited before making my statement.

When I was sure I had his attention, I said calmly, "And you think you are going to push my wheelchair around!":wink:
 
Cindy -

Maybe you better go straight for a motorized wheelchair. If my sidecar idea catches on, you could get one of those and put Lee in it so he doesn't get lost.

Liz
 
I told him, and he likes the idea! It's better than the one I cam up with! I was going to feed him a couple of pops of whiskey or merlot, on the theory that since he's not a drinking guy it wouldn't take much to keep him down.
 
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I did the same thing with my diagnosis at work, kids and family for about 2 months. While I was still being diagnosed, I told everyone I had a bulging disk in my back that was causing my left leg to go numb. My 1st diagnosis was PLS, since I still had muscle strength and not obvious fasiculations and a negative EMG. The fasiculations just seemed to hide when I saw a doctor.

My dad hung on to fact that I "just" had PLS and that is what I told people at work. Then eventually I could barely walk and everyone got worried. The next day I came to work with a walker and began telling every one, one at a time about my diagnosed. After telling about 30 people, a co-worker who's son has a rare illness also, suggested I setup a CaringBridge website. This website made it so much easier to get the word out, so I did not need to keep explaining 3x a day. www.caringbridge.org\visit\bobryan

Plus the Prozac really helps keep me on an even keel. I was a basket case before and mad at all the doctors.

I would definitely recommend a motorized wheelchair, I went stumbling, to a walker, to a scooter, and now a motorized wheelchair. The scooter and motorized wheelchair really saved my knees and arms, my joints were getting so sore. They are a blast to drive and you can still go shopping and on walks outside, I even walked the dog while riding the scooter. It takes 3 to 4 months to get motorized wheelchair, unless you get one from the ALS lending pool. So its a good idea to start process before you really need one. I am just lucky the ALs pool had one available immediately, otherwise I might not be working right now.

-Bob
 
Nice website, Bob. Thanks for sharing. Cindy
 
Live until you die

Hi Bob,
I think you have the right idea about not wanting the people around you to be sad or sorry for you all the time.

My girlfriend Linda just passed away November 16th after 4-1/2 years of LIVING with ALS. She refused to let ALS rob her of continuing to enjoy whatever time she had left.
With the exception of the last few months of her life, we went to the nail shop for biweekly pedicures and manicures (yes it was very hard and awkward to get her into the spa chair and people did stare) we went to Nordstrom and Macy's often and last January we even went to New York City to see the Christmas tree in Rockefeller center.
Linda never had a power wheel chair or van. she had a small sports chair for the duration of her illness. This was not the norm as I've now come to realize. From the beginning of her symptoms I was there for her to lean on as she grew weaker. We never considered saying we can't do that - we just found a way. Another friend and I learned to carry linda on our backs piggy back style up the two flights of stairs in her tri level home when she could no longer walk. Linda's husband invented a lift and built it in their home that allowed her to wheel her small sports chair into it and pull a lever that carried her up to the next floor. When her arms no longer worked - we pushed her into the lift and pulled the lever then ran up the stairs to stop it in time and push her out. Regarding our trip to New York, I forgot to mention that we piggy backed her onto the plane and off. Many people said we should not do the things we did because she or we could be hurt. Linda was the first to say "I'd rather die living than sit around waiting to die". She refused to be tied into her wheel chair in New York City, she did not want to look sick - we tried very hard to be careful but did not see one crack in the side walk in Central Park and Linda ended up face down on the street with a broken nose and black eye! She would not let us call 911 she just said "pick me up and let's go!" I could go on and on giving you examples of the crazy things we did.
I hope that these examples give you hope as you continue to live you life as fully as possible in spite of ALS.

I wish you the best of everything this live still has to offer you.

God Bless you and your family,
Jeanne
 
Bob,
What an uplifting web site. Thank you also for sharing .

Ellisa
 
Good to "meet you" Bob. I noticed from your profile that you and I are both 46, have two teenagers and one loving wife. My daughters were 4 and 8 when I was diagnosed 10 years ago and today my wife and my 18 year old are visiting the college she'll attend next fall - time flies... Keep your great outlook!
Regarding wheelchairs - I've had two Permobil's, my first, about nine years ago, was the unit you mentioned, a "Permobil Chairman Corpus," it was excellent! When I finally wore that one out two years ago, I wanted to replace it with the exact same model. However, our new insurance company would not approve that model so I had to settle for the model under the Corpus. The Corpus looks the same as my new Permobil, but, as they say, looks can be deceiving. The Corpus has heavy duty suspension and other unseen features that I wrongly assumed didn't matter. I live in a rural area, by a lake... My wife and I enjoy going on walks, sitting by the lake... And many times we have to go "off road" through fields... My old Corpus did great, the bumps didn't even bother me, but we rarely even go anymore because the suspension on the new one is horribly stiff, going through the same field gives me a neck and headache. That is the only difference, my new chair is just as comfortable around the house, going to church... Some insurance providers clasify the Corpus as heavy duty, and because I only weigh about 150 pounds, they said I didn't need it.
Take care Bob.
 
Bill,

Thanks for the information on the wheel chairs, I plan to use funds from MDA and my flex spending to pay for the upgrade wheelchair.

I hope to be as lucky as you and survive to 10 years.

-Bob
 
Great website Bob.
I read that you're selling your home, are you building a new home?
 
Bill,

yes the cost renovating our home to make it accessible was prohibitive > 120k, and would make our house look very strange. The proposal was to turn our dining and living room into an accessible bath and bedroom. We have a 3 level walkout, with the bedroom upstairs, which is getting very hard to climb. I only go down/up the stairs once a day. I have a walker on every floor to get around, but I am planning for a motorized wheelchair. The walker was wearing me out, and my knees and ankles hurt.

The new house will be a one-level rambler, with a ramp in the garage for the wheel chair. We are looking into adding an elevator, to gain access to the basement and kids rooms. The cost of a elevator in an new home is 15K to 20K, the cost to add to a existing house was 50K to 100K just for the elevator.

We need to sell our house and cabin to afford the new house. Luckily my parent's have a cabin we can still visit.

Bob
 
There's SO much good info in this thread -- about attitudes (my biggest problem), and the idea about a website (wish I'd thought of that), and mobility.
In another thread, I said I'd started out with a cane; graduated to Canadian (forearm) crutches, a walker, a rollator (essentially a walker with big wheels), then a manual wheelchair. I chose the manual chair as I wanted, or hoped to exercise my arms. It looks like I'll graduate to a power chair early next year.
Logistics has been a problem. If I use dial-a-ride, the wheelchair goes easily. But the darn chair weighs about 35 pounds, so is near impossible for my wife or daughter to throw into the trunk. For going to church, I thought the rollator would work, as it has a place to sit and push, but getting it in and out of the car hasn't worked well.
My doc said a scooter won't give me the support I'll need, and he recommends a power chair. That will work in the house (but not into the bathrooms), and on dial-a-ride, but we'll need a trailer behind the car to carry it (I suppose?).
Have any of you reached the power chair stage, and how do you deal with that?
Alan
 
Power wheel chairs

Alan,

I am new to power wheelchairs, I have had one at work for 1 week, I love the tight turning radius. For now I take my walker from the house to the car, and the security guards at work bring my chair out to the car. My home is not very accessible, so we are planning a one-level home. Transporting the chair is difficult unless you have a accessible van. I have found 2002-2003 grand caravans for around $23,000 with a conversion.

Once I get the van, I can transport the wheelchair around. I have heard that insurance will cover 90% of a permobile Corpus 300, which is good for indoors only, and indoor/outdoor wheelchair will cost at least $3,000 more. I'm sure there are many other choices.

-Bob
 
Bob, I think you're wise to just start over and build a new home. I was diagnosed in 1996 and we were in your same situation, our two-story home would have been expensive and time-consuming to remodel and if we would have done it, no one would have ever wanted to buy that confusing mess if we ever wanted to sell it. In 1998, when we decided to sell that home and build a new one-story wheelchair friendly home, I'm sure friends and family thought we were crazy, they probably wondered why we were doing all that when I had ALS and would probably die before the home was even built... Well, we've now lived in this new home for seven years and it works really well for us. It's almost all tile flooring, a huge 5' X 7' roll-in shower, a ramp to the garage... It was worth the hassle. Plan for your future Bob!
 
Bill,

WOW...you've had ALS since '96? I hope you don 't mind me asking, but did your doctors give you an indication that your progression was slow? Where has your progression taken you...what condition are you in now?

My sister was diagnosed in Feb of 2006. Her left hand doesn't do much anymore and her right hand is declining as well. Her mobility is such that she now has a van with a lft, has a powerchair at work, and is making arrangements to get one at home, too.

Marcia
 
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