Reference Thread of who we are

[wewillbeatthis]

I am aware that there was a post of this nature a while back but it seems that it was not kept up...

Or course we have new people such as myself and those that have been here for awhile.

Please Post the following:

Name or nick name
Diag. date
Symptons
Demographics (where you live)
medications, vitamins, equipment
Activities

Thanks

My dad was diag. August 9th 2005 However has had problems walking since 4/2003....

Currentley takes

Blood Pressure medication
Baclofin
Rilutek
B-12
Multi-Vit
Vit E
Vit C
Beta Carentene

Physical Therapy
Golf

Cane



Currently

[me]

My name is Melissa and I got started here due to symptoms my husband was having.

He had an EEG, MRI, and bloodwork done. They felt it was stress causing the symptoms, much to our disbelief, and did not recommend any further testing at that time. That was a year ago now.

Some symptoms remain but most have gone away.....maybe it was stress? Maybe it's something else that will be determined later? For now, we live for today and don't worry about the symptoms we do see...and pray it's stress!

No special regimen, he's a live for today kind of person. "If your going to die, you might as well die living it up" I think might be his motto!

-me-

[Jerry Story]

About:
--Blood Pressure medication
--Baclofin
--Rilutek

There never was and never will be a disease that is caused by deficiency of a drug.

[TBear]

I'm sure that insulin dependant diabetics might take issue with that statement. Perhaps anyone with an endocrine deficiency who uses synthetic hormone replacements (DRUGS) to stay alive might disagree with you too. While I know that the cause of my high blood pressure is inactivity and stress... I'm sure glad that there is something available that controls it while I work it out.
I think your statement is overly simplistic and essentially innacurate.
CHeers
T

[me]

Jerry - do you do any physical activity to help? Are you the person diagnosed or someone you know? Tell us a little about yourself!

[Mike27]

Hi Jen,

My life, I would have to say, on the whole has been great! I was diagnosed in ’93, I was 30 at the time. My wife and I had just been married (’92) and we were living in England.
At first, for a few months I was very depressed and extremely irritable! Why my wife never left me, I don’t know but she stuck by me, much in the way you stick by your dad.

Since my dx, I’ve had two children, one is 10 years old and the other is 20 months. I just came to grips, one day, that ALS is a part of my life now, there’s nothing I can do about it (yet), and crying about it is not accomplishing a darn thing. I read everything I could about ALS, the brain, attitude/positive thinking and religion. I’m not an overly religious person, but I am spiritual. This is how I handle things on an intellectual level.

On a physical level, I take the vitamins prescribed for me in ’93. That is;

-3000 mg of vit C;
-1600 IU of vit E; and
-25,000 IU of Beta Carotene. I take all these spread through the day, not all at once.

I’ve also added;

-400 mg Coenzyme Q10
-3000 mg triple fish oil
-low dose aspirin (1 daily)
-multi vitamin (1 daily)
-5 mg creatine

I also do range of motion exercises daily, as laid out by my pt, and a little tai chi.

For the emotional level, I try to stay active with volunteerism, writing, going to movies, anything I can think of!

Like I said earlier, I believe in the mind-body connection. If you mentally feel down your body will follow suit. But at the same time, if you force yourself to grab your coffee and go out on the deck to read the paper with the morning sunlight, your mental outlook will improve! Where the body goes, the mind will follow…
If on bad days, your dad is feeling sore or has cramps, bring him his favourite video or a cold drink and some family photos. Anything to get his mind on something happier than his body pains. It works!

Some days I feel down, it’s natural! Then my kids come home and jump all over me, and suddenly things are not so dark.

Now, Jen, These are all beneficial for your dad. Please, please remember to look after Jen as well! Take your vits, eat properly, have fun and enjoy life! I don’t mean to pretend to ignore ALS, I mean enjoy the life beyond ALS. It’s only a stumbling block, nothing more.
ALS is only a part of your dad’s life, it’s NOT your dad’s life.

Hope this helps!

Cheers!

[Al]

My turn I guess.
Grampal or just Al.
Diagnosis Oct 03 at 54 years old.
Noticed fasciculations and weakness 10 months earlier. Hands are pretty wasted and lungs are crappy.
Live in Brampton Ont soon to be in Orangeville (Oct. 21)
Take Rilutek when I remember, Quinine,Amitryptiline, CoQ10,Vit. E&C and Creatine,
Heart and BP meds Quad By-pass 99.
Started Bipap Jan 05
Spend a lot of time here and on other forums. Still like to get to cottage and Airshows. Motorcycle races. Been fishing a couple of times this year but reeling is getting harder. Still enjoy flying. Don't have a license anymore but the airplane doesn't know that so once in a while people let me touch the controls.
Son 34 daughter 31 wife of 35 years and one beautiful 4 month old granddaughter.
I eat and drink whatever pleases me at the time and it hasn't killed me yet so here I am. Glad to get to know all the new members.

[Mike27]

Hey Al,
How did you find the amytrypiline(sp?)? I tried it for a bit, but I felt really strange. Kinda scared me so I stopped.

You?

[Al]

Geez how did you tell strange from normal with this thing? It does tend to dry up the secretions and I don't choke at night. I use a full face mask on my Bipap and my mouth gets pretty dry even with humidified air. Don't know if it's the Amytrip. or what but my lips and inside of my mouth are tender all the time now. Could be the dry red wine but who knows. I'm not about to stop either so as they say grin and bare it.

[jbird]

Hello...I think I will join in.

Husband 45 dx July 05 -
started off with slurred speech some weakness in the right side 7 mos ago. Thought the slurring was caused from large goiter of the Thyroid. Had Thryoidectomy May 05. Slurring still there, weakness worse. Went to 2 Neurologist and received dx. has Bulbar and Dementia
I feel the dementia is a blessing as that he is not fully aware what is going on. But it is hard to see him in this state. His memory is very short term.

Medications:
Calcium
Vit E
Synthroid (hormone replacement)
Rilutek
Glyconutrient - Ambrotose

Praying for a cure
jbird

[wewillbeatthis]

Thanks guys for filling me in on your stories.... It sounds like your both doing great and really taking care of yourselves..... I read your stuff to my dad and he seemed really releaved with hearing that people do get around... My uncle his brother really did something he did not like today... Dad acted like it did not bother him but I know it did and I was ready to let me Sicilian out on him but kept it in..... He told people at work what was going on and my dad does not want everyone to know... This was not my Uncles place too open his mouth but whatever he is my elder and I must respect that... I told my dad when he is feeling up to talking to him about it to tell him that he will tell whome he pleases when he pleases and that was that...

Mike you are right.... I have not been taking care of Jen at all. Jason my husband to be is really not happy with me right now cause he stated that he knows my dad will be ok but he is not too sure about me.. I am not sleeping or eating right and my mind is in a funk... Not good I know but I am going to do some spirtual healing this weekend and I am sure I will be good to go. I am off to spen some quality time with my hubby to be and my doggie.
Thinking of all of u always
Jen

[Mike27]

Well done, Jen!

Have a good weekend!

[dana]

So, here is my story...

My name is Dana, and my dad is the one who has bulbar ALS symptoms. He hasn't been given an "official" diagnosis, but that is what the docs think it is. They are giving him some more time to progress before they give him the official diagnosis. His symptoms started about May 04 with his speech being slurred. We thought he was crazy because we could not hear it in his speech, but he could tell himself. He finally got into the Mayo Clinic in March 05 where they told him about the early symptoms of ALS. Things have progressed, and his speech is pretty bad. Also, he has had some choking episodes. His physical well being is great though. He also has tested positive for Lymes Disease. He is being treated for the Lymes with some antibiotics which he receives through a tube in his chest four days a week. I am not too sure of the names of the medications he takes, but I know that they are all for the Lymes. He is not taking anything for the ALS.

My dad is 51 and seems to be way too young to be going through this. Although, I know many of you are much younger than him that are dealing with this disease. I am 27 and the oldest of three kids. I've got two brothers who have taken over my dad's portion of the family business. I am married and have an 18 month old little boy who brings a lot of joy to our entire family. I was a Kindergarten teacher up until this summer, when I decided to take some time off to be a mommy and to enjoy spending time with my dad while he is still healthy. I'm sure this will be one of the best decisions I have made, even though I love working with little kids.

I read all the entries on this forum every night, and it gives me a sense of relief knowing there are other people who are in the same boat as we are. I have gotten many ideas from the people here, and I appreciate all of the advice. I pray for my dad's health daily, and pray that a cure will soon be found.

So, that is my story in a nut shell.

[geogood]

My name is George, I was diagnosed in 1991, after a month or so of feeling sorry for myself I got up and went back to work. I did drywall for a living and tried to keep it up as long as I possibly could. I did a lot of complaining about the ALS Ontario web site, so much so that they told me to take it over! After a two week crash course I did take it over and ran it along with two others, who did input, proof reading etc. Then I took on the Canadian ALS March of Faces which I still do as well as my own site. I am now on the board of directors of the ALS March of Faces but manage to juggle all three jobs (which is the reason that I am typing this at 12:30am). I do not take any drugs other than quinine sulphate for leg and foot cramps. I did have sciatic type symptoms likely because I have been carrying my right leg so long that my left hip is just wearing out. Some meds for that and it is just fine now as well. I still do lost wax casting of silver, when it is not so hot! Quite frankly I have too darn many things to do to worry about ALS. I am 61 years old being diagnosed at 47 with linb onset (right leg) and live in Hamilton Ont. I think that to sit and worry about it is really a big waste of time and one thing that we all have to think about is that the life expectancy that we are given is an "average" so check the ALS March of Faces and see how many are gone in the same year, take their time and add it to your own which makes the average somewhat higher!

Geo.

[me]

jbird, george, glad you have joined our group. George - You are a great example of having the right attitude!

[twospeed99]

My name is Bob, 42 yrs, truck driver extrordiniare, live in BC, 4 kids girl 5, twin boys 8, and 15 yr old boy.Possible dx last month probable familial, brother has had it for 23 years so hopefully I'll be a long term survivor myself.Still working and trying to get on with life, it's getting easier every day.

[Al]

Welcome Bob ,Sorry about your luck in being here but we're rather a unique bunch here. We believe in helping each other ,passing on knowledge and most of all we believe in making the best of the shit-y circumstances that have befallen us. You might find our humour dark at times and sometimes just plain silly but most of us firmly believe that if you can't look adversity in the face and laugh you may be in trouble. Stick around and ask what you need to know or just tell us how you are feeling. We all deal with this in similar but different ways. Don't be shy. Tell us what's on your mind. We really do care. AL.

[twospeed99]

Thanks Al, wish we could of met under better circumstances though.It's been nice to have some where to sound off and read other peoples thoughts on this bump in the road.

[Carol Deboer]

Hi Bob and welcome,

Sorry to hear about your possible als dx. We will be here to help you along the way, and to offer advice and comfort and of course answer any questions that you may have. Most of us here have concrete advice, and some of us here offer advice that you will have to sift through and decide for yourself if it is relative to you and your well being. I think that you will find all of us pretty good and honest. Our sense of humour here is as Al said a mainstay. It is imperative that you maintain humour to get through some of your dark days. That is for anyone. Hope that you are doing okay and we will all be here for you anytime you need us.God Bless.

Stay Strong, Carol

[Lily]

It's so encouraging to read all your messages, to know there is a community out there.

My mom's name is Sharon, she was diagnosed July 2005 at the of 58.
Her right leg weak and she needs a cane to get around. Her speech is slightly slurred and she has choked a few times.
We live in Brampton, Ontario.
Currently my mom is drinking ensure, taking a B complex and Vitamin E.
She goes to curves to exercise 3-4 times a week and takes a walk every night. She recently walked the length of the CNE and we were very proud of her!

I have many questions, which I'll post in another message. I am truly grateful for this forum.

Lily