It's official

[bythesea]

Its official

I have ALS.

Also now I can barely walk, my blood pressure is through the roof (probably because I have to drag my body around) and all this sadistic testing has done is to suggest I visit the ALS clinic at Colum-Presb for guess what ...inevitably more of the same tests,

big help does me a lot of good

 

[BarryG]

bythesea, so sorry about it being official. If the ALS clinic is available to you then you should check it out. They can't cure you but they may be able to help you live with the monster. I have received much help from mine in the way of speech and dietary support, physiotherapy and occupational therapy to deal with mobility issues, respiratory monitoring and support and social worker support to deal with tax issues. And of course the neurologists to track where I am at physically. Pretty much one stop shopping.

 

[paleshia]

i know it's still a sad day even if you knew it was coming. hugs from one pals to another

 

[handinhand]

I remember when the Dr. came out and said the words..[I have ALS] I am so sorry for what you are going through and your family. We are all here for you.. Hugs, Lindda

 

[irismarie]

Oh, how I feel with you and for you . The strange thing is, we seem to get the same treatment all over the world. Weird, isnt it!
Makes me angry and sad and frustrated.
Lots of love to you

 

[MickeyMouse]

I'm so sorry to hear this. I don't know what's worse-- knowing or not knowing.

Please know that we all care and are very sorry to hear this.

 

[bythesea]

Thanks all for the kind words and sound advice. Like many other posters I knew this day was inevitable.

Although the Columbia clinic is actually rather close it might as well be on the other side of the moon. I live over the river in Jersey.

My wife is the only available driver and is terrified of the traffic, paying for the bridge, and parking. Having another neurological condition (cervical dystonia) complicates any travel. Anything lasting more than an hour or more and I begin to writhe in pain.

One's choices are few and so many PALS have spoke highly of the clinics. My contact is
Hiroshi Mitsumoto, M.D., Director

 

[Zaphoon]

Well, I'm sorry for the diagnosed you've been given. It just plain sucks! Feel free to vent!

 

[sadiemae]

Do what you can to get the blood pressure down. My husbands was so high(197/136) but we finally got it controlled with medicine. His primary told him he would die of a heart attack or stroke before ALS. It took a while to get the meds right, but he feels so much better now that it is under control. Hugs Lori

 

[tdamess]

so sorry , it was not what i was hoping for you...

 

[Al]

So sorry for the diagnosed. but do your best to keep a positive attitude. It is hard some days but it really does help.

AL

 

[Madison1943]

Hi bythesea, I have some thoughts on this subject. Before I was actually diagnosed by a neurologist, I knew I had ALS and everybody in my family and all my friends were convinced I didn't. So it was an uphill fight and one I didn't need, to convince them I really had a fatal disease. While this was happening I lost a whole bunch of hair and developed eczema all over my hands. It was just stress! Also I yelled and screamed at my pets all the time and made them crazy as well. When the verdict came in everybody got on the same page with me and my hair stopped falling out, the eczema was cured by a dermatologist, and I found out the Atavan I was taking made me short-tempered with my pets. Problem solved. Now we're serenely going downhill together. It really is better to KNOW what the problem is. It's a stinky disgusting disease I wouldn't wish on anybody, but it's better to know. Hope it's true for you too!
Carol

 

[indigosd]

bythesea, I am soul sorry and I know your grief. I agree with Carol. For us the "knowing" was infinitly better than not knowing. How is your home situation going and what does the Arabic symbol mean that you are using for your profile picture? Sending you moments of comfort today. hugs, Kay Marie

 

[rose]

I'm sorry you've been dealt this, on top of the pain from your other condition! I know what you mean about the commute into the city, I used to live in Cliffside Park, about 3 short blocks up from the Hudson. The Manhattan skyline was right out my windows, but to actually drive there....!

I agree with the others, short term work on getting the bp down. Good luck in coming to terms with this. (you will)

 

[bythesea]

Thanks pals for all the good thoughts, kind words and sage advice. It's comforting to know someone cares

I agree it's better to know

Life has enough problems, right? So let's poke a stick at the body and see if he's still alive

"The Om (or Aum) sign is the main symbol of Hinduism.
Most religions indicate that creation began with sound-- In the beginning was the word...
For the Hindus & Buddhists, Om is the primordial sound, the first breath of creation, the vibration that ensures existence. Om sign signifies God, Creation, & the One-ness of all creation."

I just hought it was cool huh?