off subject....

My friend the Scrubby Buddy.........

WHY? Because it makes me smile 

http://my.clevelandclinic.org/neuromuscular_center/als/default.aspx

The  A L S  Center at the Cleveland Clinic

  This is an introduction page through the Health Hub  online for the clinic and is a good place to start if you are looking for information concerning A L S / Lou Gehrig's Disease.

I have gained a lot of information from here....and it is great for me to have this link to refer to as a patient of the clinic for in between my appointments.

feeding tube update...............

This is an update on my current conditions / issues as per the response of one our ALS support group advocates today...........

I will have to be making some decisions very soon...........
that I have been trying to avoid....................
>>

"Lindsey,

I heard back from Jerry this afternoon - shortly after I sent you my "long-winded" email. He says that your FVC in August was 50%. When I talked to Brent a couple days ago, he mentioned that you were considering a feeding tube. Feeding tube placements are less complicated when the patient has an FVC of 50% or above. Recovery is faster and there is less likelihood of any complications. Brent told me that you had some concerns about a feeding tube. I will tell you that most of our patients do very well with feeding tubes. It keeps you from losing weight. It makes mealtimes faster and easier. You can still eat anything you want by mouth. It's a good way to take in the liquids that you need without choking. It's a great way to get the extra calories that you need into your diet. It is unobtrusive -- unless you tell them, no one will know that you have a feeding tube. Once it is in place, you can use it as much or as little as you want to. The procedure can usually be done as an outpatient or at the worst with a 24 hour stay. Good nutrition is very important to the management of ALS. ALS burns a lot of calories and it is hard to eat enough to make up for that."

"So that's my "talk" on feeding tubes. However, the decision has to be yours. There isn't a right or wrong decision. Feeding tubes are considered the standard of care for ALS, but I've also had many patients who have chosen not to have a feeding tube. My job is to give you the information you need so that you can make a decision that is right for you. Let me know if I can help."

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

I will add to that, that...it was suggested during my visit to OSU last month (end of August), that I STRONGLY consider having a tracheotomy at the same time that the feeding tube is 'installed'.....

as I may not be 'up for it' if I wait until later........

I am emotionally upset about this.   I told my husband last night...as I let the emotions come out....that I am scared...SCARED of what I have to look forward to........

I said this following a choking episode when a pill I was taking began to dissolve at the back of my mouth just as it was being swallowed.  I started choking and as best I can describe to you....it is as though my throat starts to collapse and I CANNOT breathe until I get it opened back up again......and I cough and  cough while trying to to breathe etc.. This happens occasionally and I have to be extremely careful when consuming ANYTHING be it liquid or solid.

That, is one reason I am losing weight.  I just cannot eat like I should be... the food I need to nor the quantity.

http://www.lougehrig.com/about/als.html

TOTO..................................the band

and bassist MIKE  PORCARO  >>>>>

http://en.wikipedia.org/wiki/Mike_Porcaro


On February 26, 2010, it was announced via official press

 release that Mike Porcaro was suffering from Amyotrophic

lateral sclerosis...

 The regrouped Toto continue to tour and perform for Mike's

 benefit in 2011
. 
In September 2012, it was reported in Classic Rock 

magazine that he was doing as well as could be expected

 with his disease but he was in a wheelchair as the disease

was progressing.

>>>>>    http://mikeporcaro.com/

&

>>>>>   http://www.totoofficial.com/news/167583

Just an FYI >>>>>>>>>>>>

http://www.youtube.com/watch?v=lnvxu5sYIU0

from the Central and Southern Ohio ALS
 Association Chapter >>

"Approximately 175,000 people participated in Walk to Defeat ALS events around the nation in 2012, 
raising $21.7 million to support care services, research and public policy efforts at federal, state and 
local levels. Since 2000, the nationwide events have experienced constant participant growth and have 
raised more than $159 million toward the goal of a world without ALS. 
To participate in a Walk to Defeat ALS event in your area, visit walktodefeatals.org. "

FYI 

In hopes of helping others here in central Ohio

............ PLEASE SHARE >>


http://www.youtube.com/watch?v=rVLRpa5fqDU

and

http://www.youtube.com/watch?v=hGog1UwD20s


in reference to the ALS Clinic in Westerville, Ohio.

https://www.ohiohealth.com/alsclinic/

ALS Association Central (& Southern) Ohio Chapter.....my 1st meeting.

Tonight is the first time that I will be attending>

ALS Association Central (& Southern) Ohio Chapter....

http://webcsoh.alsa.org/site/PageServer?pagename=CSOH_homepage

Columbus Area Support Group

First non-holiday Monday of each month

6:30PM to 8:30PM

The Forum at Knightsbridge

4625 Knightsbridge Blvd.

Columbus, OH  43214

My husband has come around to the point, where he is 

feeling a little bit overwhelmed, as the chief  caregiver in my

 life................................

I agree, that, it is a good time to get involved with others who

 

might have some good advice....and friendship etc. who are 

familiar of our plight with ALS......

these support groups are NOT in every town.....like so many 

support groups seem to be such as  cancer, ms, etc..

Most of our information and contacts thus far, have been by 

going in person to Ohio State Medical Center in Columbus, 

Ohio and to the Cleveland Clinic in Cleveland, Ohio. 

 Otherwise, it has been self research through books and via 

the internet.....................................................................

and, so, we are going to tonight's meeting :)

TO BE CONTINUED...........................