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Crooked Creek

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Brampton
Hi, my first post, so not sure if these have been answered yet. Not fully diagnosed yet, but feel like it's inevitable. Checked the family tree and it's familial. My Grandmother died when she was 48 (my mother was 15). My mother died when she was 59 (I was 15). My sister died when she was 45 and now I'm 45 and my son turned 15 today. Doubt I'll see his next birthday either.

Anyway, the disease progresses quickly in my family. Talked to my boss today and without giving him much, told him that I'd like to plant a seed to work from home soon, assuming my condition worsens. All anyone knows is that I've been limping for months and now I've started to use a cane. My left leg is very weak, right is pretty good and I've had the fasticulations (sp?) for a while now. Had two MRIs, two EMGs and the leg looks like it has the issue, but my gut's tell's me it's next. A bit of difficulty breathing in deeply this morning.

Anyway, that's the Cole's notes version of my history. My question is on the job front. How much risk is there telling my employer truthfully all of my concerns? I could still just tell them that I don't want to be in a wheel chair at work and be done with it. They would probably make accomodations, but if I can work from home, then why not. At least I'd be one less car on the road and save on gas and time.

As well, when is it reccommended to get the wheelchair sticker for my car and who do I have to get it from. I'd rather struggle than be easy. Must be a guy thing.

Then it comes to family. My remaining brother and sister know that it is suspected but nothing certain. When do you tell friends? Is there a better time than others? And what about my kids. I can't be sure, but I don't ever recall my mother explaining the situtation to me. She may have and I immediately blocked it out, but to this day, I don't ever recall her telling me that she was going to die. It wasn't until that morning that I woke to the sounds of my father sobbing that I all of a sudden knew. Sorry that I have to put this in, but I think it's allows me to open up on what I've worried about most of my life.

Anyway, I'm still soldiering on. There's a slight chance, about the same as the price of gas dropping to $0.50 litre on a long weekend, that I have a pinched nerve in my back and that is the cause. My struggle is emotions. I've been worried about this for 30 years now, seen it take my sister and wonder when or if it would get me. So emotionally I need help.

I talked to a counsellor through my work and she was very matter of fact. At one point when I said that I wasn't sure of the diagnosis she thought that I should pack up and go to the Mayo clinic where they could do an immediate evalutation. Then she asked if there was anything else to talk about. That was about a month ago and then yesterday out of the blue, she calls and asks what was going on. Don't know if I can work with her or not.

So emotionally how do we do it. One day at a time. My problem is my head, especially first thing in the morning or while I'm trying to sleep in. I've gone over my funeral, who will be there, telling people, seeing how it affects my kids, how they will be without me etc and the list goes on and on. I'm an expert a torturing myself with these thoughts.

So if anyone has some reassurance that we can get through this one day at a time, any tactics, things to look forward too etc, I'd like to hear them. I don't really think I have that long, but maybe I'm naturally skeptical. I just know about how it attacked my mother and sister and think I'm in for the same treatment.

So, not the nicest post, but getting this off my chest is helpful. So far I've cried a lot and held my wife a lot. She's amazing. While it was always a worry for me, she thought that I'd never get it since it had already taken my sister - and that it tended to only be on the female side in my family.

Anyway, got to get ready for the birthday dinner - we're off to the Hard Rock Cafe.

thanks,
 

Al

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Hi Crooked Creek. No need to apologize for a long or somber post. We laugh, cry, vent and just lay our emotions on the table here. This is a scary business we are involved in here and no one looks down on another for their feelings. Feel free to ask what you want or say what you need to say. We are in this together.
AL.
 

CindyM

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Hi Crooked Creek. So glad you found us. You;ll find a lot of good information here and foks are really caring. Almost no topic is taboo so don't worry about raising issues that we are not prepared to discuss. The ALS website has a section for kids-you might get some tips there. But we are always here for you and your family.

P.S: love the screenname!
 

quadbliss

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Joined
Dec 12, 2006
Messages
392
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PALS
Diagnosis
07/1998
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US
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California
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Benicia
Hi Crooked Creek,

I would urge you to try and see ALS from a different perspective. Right now you are simply waiting to die. With today's medical technology, it is possible to live (well) with ALS. When I was diagnosed, my daughter was 13. A couple weeks ago, (9 years later) she gave me twin grandsons. Life is amazing, and you don't need a functioning body to fully enjoy it. Consider responding to this reality differently than your ancestry.

Mike
http://mikebougher.com
 

Saubier

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May 1, 2007
Messages
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Reason
PALS
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US
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MD
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Colora
Hi Crooked Creek,

I think you've come to the right place. My ALS specialist told me the genetic variant of ALS is transmitted from mothers to sons, but the females don't get it because the SOD-1 gene is on the Y chromosome and women have two of them, so the other one just takes over for the defective one. Men of course only have one Y chromosome, so the defect is unavoidable. We all hope you have something else, but you are welcome here anyway.

Pappy.
 

LONGSAM2

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PALS
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NJ
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BRICK
Hang In, C.C.

Welcome, Crooked Creek,......So glad you decided to share your feelings. I am 14 months into ALS and pretty much have spent time torturing myself, too. It does get better and you couldn;t have come to a better place for answers. Everyone is so different. My legs are affected and my left hand is giving me grief. You will come to the certainty in time that one day at a time is the only way to get through. Maybe you will be different than your mother and sister. We can only hope and then hope some more. Hope to hear more from you as time goes by. There is always someone here to listen.

Longsam2
 

Barbie4

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Joined
Mar 26, 2006
Messages
139
Country
CA
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Ontario
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Everett
Hello

Hello Coldcreek:

Like everyone else, I want to say hello and that you are not alone in this. I do not have ALS, but my best friend does and she was diagnosed last March 06. I came to this forum then, as you have now, and felt many of the same feelings you have. There are so many great and knowledgable people here that can answer your fact questions and also so many wonderful caring people to just listen, when you need to talk and type.
This is so hard! Right now you just need to deep breathe and take it one day at a time. " One day at a time" is going to be the advice from now on in. There is no other way to deal with this. My friend was 41 when diagnosed, three children 6, 8 and 11 and I would never have believed she would find the strength that she has to get where she is today. You just never know the inner strength you have, until you have to use it. Stay strong, and know we are all here with you.

hugs to you and your family.

xo Barbie xo
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Hi Crooked Creek -

Folks here have described various experiences with their employers over this. I think what type of work you do and the size of the company you work for determine how likely you are to get a reasonable accommodations under the ADA. If I recall, smaller employers are exempt from some of the provisions of the ADA, but may voluntarily give you accommodations if they value your work. So far, my employer has been very accommodating. But recently another forum member was rather abruptly sacked with no advanced notice. You really have to evaluate your own employment situation very carefully. You may also want to acquaint yourself with the provisions of the American Disabilities Act, which you can do online. I would watch out for that counselor at work - whose agenda is her priority....yours or your employer's?

As to the handicapped parking sticker - if you're diagnosed, my advice is to go get it as soon as you can. You don't have to use it till you need it but when you do need it you'll be glad you've already got it. What I have is the little hanger that you put up on your rearview mirror only when you're actually using a handicapped space. I prefer this because it travels with me not with my car so I can use it when I'm out with other people. There is a medical certification form that your physician must fill out indicating that you meet the one of the criteria for handicapped parking. In my community, you take that form to the Town Hall and they will issue you one of the hangers. If you want a handicapped license plate, then you have to take that form to the Department of Motor Vehicles.

Your emotional state, as you describe it, sounds spot on for somebody in your situation. It would be weird if you weren't freaking out. Personally, I had to go on anti-anxiety meds in the weeks leading up to my diagnosis, because things were just so tense and frightening. Actually getting my official diagnosis ended up being anti-climactic and alleviated tons of the stress from the uncertainty that preceded. Now life has pretty much moved on to a new "normal" which includes, but does not emphasize, gradually adjusting to my decreasing abilities.

What to say to your kids? I found lots of people who think they know authoritatively how this should be handled. My husband and I have always been "parent from the gut" types. So we've ignored the experts and just done what we feel is best based on our kids ages and personalities. I think that anybody who tells you there's one right way to handle this situation is oversimplifying the matter and imposing their values on us. If you end up diagnosed with ALS, talk it over with your wife then do what you both think is right for your family.

Liz
 

Crooked Creek

New member
Joined
May 14, 2007
Messages
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Learn about ALS
Country
CA
State
Ontario
City
Brampton
Thanks everyone for your words of encouragement. We went out to supper last night and I sent most of the crew on ahead of me. My younger son walked with me and I survived a stumble. My left leg buckled but I recovered before I did a face plant.

So here's a technical question regarding the use of my cane. Since my left leg is weak, should I be replacing the strength in leg by using my left arm or based on a recomendation from a knee surgery patient, I should use my opposite arm and counter-balance the effect?

As well, I was short of breath last night in bed and found that by lying on my side, it made it better - is that normal?

I still have a bit of a flying scapula that has everyone baffled - not sure if I should see a GP (I've nicknamed mine Dr Do-Little - maybe a bit unfair), my chiropractor, physio or masssage therapist?

thanks
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Yes crooked creek lying on your side does help with shortness of breath rather than on your back and is 'normal'. This went on with me for about 6 months before I was sent for a sleep study and they found I needed a Bipap. I'd mention it to Dr. Webster asap.
The cane I'm not sure about. By the time I needed one I couldn't use it because of my hands.
AL.
 

Crooked Creek

New member
Joined
May 14, 2007
Messages
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Reason
Learn about ALS
Country
CA
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Ontario
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Brampton
Hi, I tried golfing this weekend. It was very tough, but I did get a couple of shots away. Had to hit from the ladies tees and my driver only goes about 100 yards instead of ~230. Still had fun playing with my son and I think what I'll do from now on is just ride with people and enjoy the scenery and friendships. Besides, I can still drink and not worry about it affecting my game.

By the way, I've renamed my cane "Crooked Stick".

Another question for you experienced people. In my case, I'm not fully diagnosed and I'm reluctant to say that I'm ALS "elegible" and then go down that path. I've used excuses about pinched nerve in my back ( which is what we thought it was), getting old or that the Doctor's are still trying to figure it out. Any advice on what to tell casual friends (or close ones for that matter), colleagues etc?

cc
 
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