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

[bryanmn]

Sometimes I think I am ignoring my ALS or just accepting it and trying to enjoy what is left of my life. People around me can be so sad or avoid me, but my best friends say they are sorry, hang to help around the house and drive me home from happy hour.
I like a good cry, but sometimes I want to say yes I have ALS and I need to enjoy the now, so please don't stay sad all day, because I don't have that many days to be sad.

Anyone else feel like this?

[Lindoglvr]

Bryan,

I don't think you're crazy at all to enjoy life and to be happy, rather than feeling sad every day about the dx of ALS. Actually, all people should live as if "today is their last day"....maybe this world would be a better place. People would slow down and learn to enjoy and do things that are really important, say the things we mean to say all the time to people we love, etc.

Just think of the people that are taken suddenly and never had that chance.

Linda

[Al]

Hi Bryan. I noticed you are new. Welcome. If you stick around long enough or read back you will find lots of people here with your attitude. With ALS attitude counts and (usually) the better the attitude the longer you live. It's not scientific but happier people are more productive and I think will last longer. AL.

[Pollyanna]

Well, if you're crazy, there are a bunch of us in the same nut house!! :-) Yes, it's a death sentence, and yes it's an insidious, horrible disease, and absolutely my husband and I both hate it that he has it. BUT....we both retired the minute we got the diagnosis, and although we aren't doing anything exotic, we are living our dream....to spend every waking moment together. And we are loving it...even on days like today when we had to call 911 to get him out of the floor! Yes, we cry sometimes, but we laugh more, and it's wonderful to be alive. And with this disease, if you have the right attitude, there are a lot of things to laugh about!!! Hang in there Bryan, and don't let those other folks bring you down...you have the right idea!:-D

[CindyM]

You have the right idea, Bryan! Everybody should live as if they might step off a curb tonight and get flattened by a truck. IF they did, there would be no more unkind words between friends and family, no more unkind actions against the less fortunate, and we'd all enjoy the sunsets more often. So go for it! Someone else on this forum said it best: "either get busy living or get busy dying." Enjoy your morning, Cindy

[DavidGL]

Sometimes I think I am ignoring my ALS or just accepting it and trying to enjoy what is left of my life. People around me can be so sad or avoid me, but my best friends say they are sorry, hang to help around the house and drive me home from happy hour.
I like a good cry, but sometimes I want to say yes I have ALS and I need to enjoy the now, so please don't stay sad all day, because I don't have that many days to be sad.

Anyone else feel like this?

Bryan,
You should say exactly that to them! I think they would appreciate hearing it. It must be sooo hard for the friends and relatives to figure out how to deal with it.

DavidGL

[jimmylee]

Hey Bryan kudos, to you I also was recently dx w/ this disease and its harder watching those around me. It's as they expect me to break down, but i've known for awhile something was'nt right and have a HUGE LOVING GOD that walks me thru each day as though he wants me to feel his presence. So I to live as though today is the last day I have and TRY to enjoy the moments I have. Keep the faith and GOD BLESS you and yours.

[bryanmn]

Thanks for the encouragement that is exactly what I needed. Its good to hear from people in the same crummy situation, but still able to enjoy life.

I recently got a power wheel chair from the ALS lending pool, and I having a blast driving it around work and home. The ALS lending pool has been a great resource for accessibility aids.

I am working on picking out my permanent motorized wheel chair. I am think of getting a Permobile C500 Corpus or the C300 Corpus. What motorized wheelchairs do other people like?

[MarciaA]

David,

It IS hard for family & friends to know how to deal with this. We want to stay as upbeat as possible, but don't want to come off like we don't care...we want to cry with you, but we understand that crying all the time isn't the answer. I view it like a great big roller coaster...sometimes I'm up and sometimes I'm down...but it often feels like I have a blindfold on during the ride because I never really know what's going to happen next.

Bob, (bryanmn)
Welcome to the forum! I've been away from it for a while, but have found lots of support through the wonderful people here! I see you're from Minnesota. I'm from Owatonna and my sister who has ALS lives in St. Paul. I see from your website that you've gone to the support group meetings at the U...I'm not sure where her group meets, but you may even be in the same group! Small world, huh?

Marcia

[sara06]

Hi Bryan,

I think your attitude is absolutely remarkable. I don't have ALS, but I just lost my mother after taking care of her for 8 months. My mom was like you, tried to enjoy every new moment. She was a jokester and had a strangely morbid sense of humor about the disease. I think that made it a lot easier on me and the rest of my family. It's confusing for us at first. We tend to dip our toes in and test the waters. We don't want to be too optimistic, for fear of upsetting or even annoying our ill loved ones.

How long ago was your diagnosis? Your friends and family will adjust eventually. It's very hard at first to not wear your emotions on your sleeve. I learned to keep my tear time with my mother for the overwhelmingly happy moments, I usually did most of my grieving with my sister... away from my mom. It will get better, just beware, when your friends haven't seen you in a little while, the changes and progression seem less gradual and it sets them back with their grief. You just keep on keepin' your head up and your spirit will always follow! You are setting a great example.

God Bless you and yours,
Sara

[bryanmn]

Sara and everyone,

My diagnosis was July 24, 2006, but I had noticed symptoms from August 2005.
My legs hurt after running with my daughter and struggled to run a mile in 13 minutes. Then a few months later I could not run, because of a sore left leg. Then walking became difficult with a limp.

While in Maui, April 2006, my kids were joking that I stumbled into the bars instead of coming out of the bars. I am so happy we made that trip to Hawaii. I went scuba diving for the 1st time with my son. Guess what, my left leg did not work and I needed someone help to get the flippers on. Snorkeling was beautiful even it was raining.

Later, May 2006, I went to the doctor for a sore back and knee, he said it was bulging disk, so I went to physical therapy. Then I started bouncing off the walls because I was losing my balance.

June 2006, my legs froze from spasticity at a convetion center company wide meeting. Here I am sitting, my legs don't work, and a 24 foot high screen has a HUGE clock saying 30 minutes till presentation starts. I freaked out stumbled out of the convention center, took a taxi to back to my car, got in my car, stumbled to the Emergency Room, complained of balance issues and strange twitches in the shoulder (a.k.a fasiculations) the doctor said it was in my head.

July 2005, we forced our way to see a Neurologist that week, most appointments take 3 to 6 week to see a doctor. Managed care what a dissappointment! Our 1st neurologist said you probably have ALS but he wasn't sure and he walked out of the room. Son of *****. There we sit shocked and the doctor left the room. Finally we went the ALS clinic at Fairview, it was like we came home. Our ALS doctor, Dr Walk (isn't it ironic, don't you think..) was very compassionate, and we meet a social worker, occupational therapist, and had a 3 hour appointment. If you have ALS find a multi-disciplinary ALS clinic, they totally get it.

July 2005, we go to church, shaking in our boots scared, keeping the news to ourselves. The sermon was about God's Love and community, reach out to the family and community and God's Love will surround you. Well it has and I feel blessed. Yes ALS is a death sentence, but so is life, but I am experiencing so much love from friends and community, that I finally understand what life is about and Gods love.

That's my story in the last year, I look forward to the next day, every morning I wake up, I am a lucky man...

Bob (bryanmn)

[Al]

Thanks Bob for putting a person to a name. It helps to have an idea who people really are on the forum. Makes it more like family and not just a bunch of names with an illness. AL.

[liz]

Bob -

We're all going to have some bad days because of ALS and so are those who care about us. Doesn't mean we have to let it take over very waking minute of our lives.

You seem to have a positive approach to the situation. How are your wife and kids doing with all of this? I'd like to think your attitude is helpful to them.

I do think Sara made some good points about how others react to us, ones I had not considered. I'm having a hard time reading some peoples' reactions, some folks have been really great, and some folks have just been incredibly strange about the whole thing. I think some people are just plain better at handling these situations than others.

As to your request for info about wheelchairs - actually, I know nothing, but I'm picturing you in something with a side car. :-D

Liz

[bryanmn]

Liz -

Our teenagers were at first in shock, but we know they we talking to friend and grandparents, cousins, etc. Since teenager naturally pull away to excert their independance, its hard to tell sometimes. But I give my daughter rides to school and pick her up from sports practice. Its amazing how much being in a car for 15 minutes with nothing to do but talk can help a relationship.

My wife is having a hard time but church support groups for people with similar crisis like agressive cancer and the ALS support groups at Fairview seem to help.

My parents are having a harder time, since they do not see me every day. We have invited them to the ALS support groups as well.

How does your family cope with ALS?

-Bob

[liz]

Bob -

Our kids are aged 7 - 14. We haven't said "ALS" to them because of the unpredictable way and time frames in which it progresses. They all knew my right hand had become crippled and when I started noticing more symptoms and eventually got diagnosed we decided to say that the problem I have in my right hand is now starting in my left hand and legs, that I will gradually become weaker, but we don't know how long this might take. We opted out of addressing the mortality issue yet because of the youngest not be old enough to digest this and hence opted out of naming the disease so my net savvy teens couldn't google it on their own and start reaching their own conclusions and talking to the younger kids. We intend to share more as/when things progress. I'm still pretty "functional" - you wouldn't guess I have ALS (or anything else) from looking at me. Still walking, working, driving.

Your guess is as good as mine somedays how my husband is feeling. He's pretty stoic anyway - some teary moments early on but then back to business as usual. Partly, this is because we're trying, for the kids sake, not to act like there's some huge medical disaster going on. This definitely has pros and cons. He's mostly focused on getting our financial affairs better situated to deal with upcoming expenses and on figuring how to make our raised ranch house handicapped accessible. Right now he's up in the Adirondack's hunting - needed a break.

My mom is 70 and lives 6 hours away. She came to visit and we had a good cry. We talk weekly on the phone mostly because she needs to, as she says, "just hear my voice". My brother who is a recovering alcoholic went and relapsed when told him my news so I guess I won't be looking to him for loads of support. My husband's family is local and providing the most support - they are a terrific bunch.

There can't possibly be one right way to handle this stuff. I guess we all have to manage our circumstances as we feel best, probably expect to make mistakes then fix them and forgive ourselves.

Have a good night.

Liz

[CindyM]

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:

[liz]

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

[CindyM]

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.

[bryanmn]

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 dx. 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

[CindyM]

Nice website, Bob. Thanks for sharing. Cindy

[trustinggod]

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

[ellisa]

Bob,
What an uplifting web site. Thank you also for sharing .

Ellisa

[Bill60]

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 dx 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.

[bryanmn]

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

[Bill60]

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

[bryanmn]

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

[alan911]

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

[bryanmn]

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

[Bill60]

Bob, I think you're wise to just start over and build a new home. I was dx 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!

[MarciaA]

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

[Bill60]

Yes Marcia, I was dx with ALS in 96. Mine started in my left arm and then my right arm like your sister. I've been in a wheelchair, unable to speak... For over eight years. Last year, I had a feeding tube put in which has made life easier. There is no rhyme or reason to this stupid disease. I never asked my doctors their opinions regarding my progression, if they thought it was fast or slow... I think their opinions can become self fulfilling prophesies for some people. I think they believed I had a fast progression because I did go from walking and talking to not doing so in just over a one year period. But, then the disease just seemed to stop or at least slow down alot. I don't think anyone can predict what will happen. I hope and pray that your sister is giving advice on this forum ten years from now.