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Bill43

Member
Joined
Nov 21, 2011
Messages
10
Reason
PALS
Diagnosis
04/2011
Country
US
State
Florida
City
A Small Beach Town
Hi Folks,

I guess I'm one of the new PALS on this bus. I can't say I like our destination but I figure with a bus full of other PALS the trip should be easier.

I first got the word that I may have ALS from my neurologist last April after I failed two EMGs and a NCV test. She referred me the Mayo Clinic in Jacksonville where they did several MRIs, a CAT scan, lyme disease blood test, a spinal tap (ugh) and various other test that are just a blur now. On July 29th they positively, absolutely, guaranteed me it wasn't anything else but ALS.

My first symptom was November 2010 when I began noticing a weakness in my right thumb. Now a year later I can't walk without a walker in front of me, I've lost about 30 pounds, have trouble rolling over in bed, have trouble swallowing liquids, losing my voice and have short, shallow breaths. So I suppose this disease is progressing rather rapidly.

My neurologist referred me to a pulmonary specialist for my breathing problems. He had me wear a oxygen sensor on my finger one night and the results were borderline bad. Now he has me scheduled for an overnight sleep study next Tuesday. He says he wants to get me on a BiPap machine as soon as possible. The sooner the better he says and from what I've read here he's right about that. Everything considered I think I have some pretty good doctors working with me.

So anyway, I'll just grab a seat in the back of this bus and try to enjoy the trip.
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
So sorry you've had to join us Bill. You'll find the other riders a great group of people.
I had my second opinion with Dr. Blaylock at Mayo in Jacksonville in May 2011. Will you be attending Clinic there? Seemed like a nice group.
 

lizzie11957

Active member
Joined
Nov 7, 2010
Messages
92
Reason
PALS
Diagnosis
10/2010
Country
US
State
Georgia
City
Centerville
I'll sit with you on the bus, if you'd like. I was diagnosed October 19, 2010 with bulbar onset at Emory ALS Clinic in Atlanta. I can no longer speak or chew. I too have trouble swallowing liquids. I got the PEG early and have actually gained weight. But, I can still smile, laugh and enjoy every moment of life. There are a lot of things you can do to maintain a high quality life for as long as possible. I understand a BiPAP is one of those things. Fortunately, I don't need it yet. Do you go to an ALS clinic? They can help you with just about anything. this is also a great source of good information. "life is not about waiting for the storm to pass. It's about learning how to dance in the rain". (((((hugs)))))
 

Okie2

Distinguished member
Joined
Dec 21, 2010
Messages
258
Reason
PALS
Diagnosis
04/2010
Country
US
State
Oklahoma
City
Bartlesville
Try to find a ALS clinic! They can help with all aspects of the now and help with the future things that come with the monster. Being proactive is a must, such as with a bibap, is a great thing. Find a comfortable seat, the bus may break out in song at anytime, especially in the After Five Forum! Sorry you are here but Welcome aboard.
 

Ms. Pie

Very helpful member
Joined
Mar 26, 2011
Messages
1,794
Reason
PALS
Diagnosis
10/2010
Country
US
State
CO
City
Colorado
If this is the short bus, I'll grab a seat too. My 1st opinion was in Nov of 2010, 2nd in January 2011, 3rd in May. I had symtoms a couple years ago with weakness in my fingers on my right hand. I got some AFOs for both ankles/feet (drop foot in both) and can walk well with a them and a cane. It's nice to meet you! :)
 

notgivnup

Senior member
Joined
Nov 8, 2010
Messages
815
Reason
PALS
Diagnosis
11/2010
Country
OS
State
Darkside of Moon
City
country
Hey fellow bus riders! Welcome Bill! But I am so so sorry you caught this bus. This is the best bunch of people I ever met, Loving Supportive and have a wealth of info for you. I was D X last Nov 2010. Barley can walk now use manual wheelchair, but doing the best I can. Very nice to meet you. ((HUG))
 

Shane the Pain

Active member
Joined
Jul 12, 2008
Messages
97
Diagnosis
05/2007
Country
US
State
CA
City
San Diego
Hey Bill,

Holy Shit Batman !

Sorry to hear it brother !

Survival gets down to the basics. We all need the following:

Proper nutrition
Proper oxygen
Keep the body moving

Get the BiPap asap and consider getting a feeding tube sooner than later.
You can fight this thing and you can do things to help yourself.

I'm here for you in any way I can........

Fight on,
Shane the Pain
 

Beach Bum

Distinguished member
Joined
Oct 5, 2010
Messages
142
Diagnosis
08/2010
Country
US
State
SC
City
Conway
Hi Bill,
We are all on the same bus,my diagnosed was Aug 2010,I can no longer eat,have the Peg,lost my voice bout 8 months ago,can hardly walk with walker,right arm and hand are gone,getting weaker every day.Big question,are you a Vet,if so call the PVA and also your state ALS chapter and tell them your story.The VA has helped me so much.Good luck to you,you will learn tons of info here.---Ken
 

Gail K

Active member
Joined
Nov 10, 2011
Messages
47
Reason
PALS
Country
US
State
New Jersey
City
Marlton
Welcome to the bus and I'm sorry you have to be on it. I'm a passenger too.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Guess I'm the driver of the bus. Welcome Bill.

AL.
 

susanf

Senior member
Joined
May 26, 2011
Messages
647
Reason
PALS
Diagnosis
06/2011
Country
US
State
fl
City
Palm Harbor
Hi Bill, sorry to hear your with us. I'm over in Palm Harbor which is next to Clearwater (literally one block over). I got to USF but call your nearest ALSA and set up a meeting with a social worker. They are so helpful. Feel free to ask anything , there are wonderful people here.
 

Eric-1

New member
Joined
Nov 21, 2011
Messages
2
Reason
PALS
Diagnosis
04/2010
Country
US
State
OH
City
c0ls
I am sorry you had to get on the bus. Your tale sounds familar, my first sympton was a weak thumb and index finger, I could not press the finger nail clippers. Eight months later, I could not run (Feb 2010)...then I could not walk(Aug 2011). I can still chew and swallow any food, the bus follows a strange path.
 

Ladyinn

Distinguished member
Joined
Apr 7, 2010
Messages
398
Reason
PALS
Diagnosis
11/2009
Country
US
State
South Dakota
City
Custer
Hi Bill, glad to meet you. The people who ride this bus are pretty hardy people -- some of them are caregivers, and they gain a lot of good from this forum as well.

I used to live in a small beach town -- Apollo Beach. A far cry, weather wise, from where I live now in South Dakota! Both places are beautiful in their own way. I've discovered that since I am a regular bus rider that I am making friends from all over the world so consider myself fortunate to have found this bus.

My story is much like yours and all the others. It took several years for me to get a definite diagnosis. In October of 2009 they finally said, out loud, what I hadn't allowed myself believe. At that time I had lost the use of my left arm, and was falling and stumbling. I blamed the falls on a balance problem since my left arm just hung by my side. Wrong!

I have no use of either arm and my hands and fingers move very little. I now use a program called Dragon speak in order to communicate with others on the forum. My left leg is also useless. So I am now using a power wheelchair, I also need assistance with dressing eating and personal care. I am still able to talk and eat, laugh and enjoy concerts Theatre and the like. Watching my grandchildren gives me a great deal of pleasure. And I might add that I am catching up on all the reading I never did while I was working. :)

I use a bi-pap with oxygen at night and since I've been doing that I feel much better. My lower left lobe no longer functions so my breathing is pretty shallow and a bi-pap helps immensely. Nobody has said, but I am assuming, that since the demon of the disease has progressed in my upper torso and arms faster than anywhere else that it won't be long until I am on oxygen full-time. No plans to get off at any of the bus stops any time soon so perhaps, I can be a seatmate for you when you need one! :)
 

Whitsend

Distinguished member
Joined
Jan 8, 2008
Messages
105
Reason
PALS
Diagnosis
01/2009
Country
US
State
NC
City
Concord
Can I get a transfer, please? I don't like where this bus is headed.
 

Sequoia

Senior member
Joined
Sep 19, 2010
Messages
846
Reason
PALS
Diagnosis
08/2010
Country
US
State
Washington
City
Seattle
WELCOME BILL....Whitsend, I'm with you on the transfer, but I am hoping for slow progression, and a lot of living and enjoying it! If I stay in the present moment things are great...if I think ahead fear takes over...so I dont go there! One day a time!
 
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