ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


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Old 10-15-2007, 07:03 AM #1
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Thumbs Up Rolling over als


http://rolloverals.org/

Saw this on another site.
Great idea KenSr.


Some of you may know my husband as KenSr from other ALS sites. This
is his plan for getting that much needed media attention for ALS.
Let's hear what you think and please spread the word.

We all think about all the media attention given to AIDS and Cancer,
yet we never see anything about our disease, ALS. No national
spokesperson, not many commercials on TV promoting our cause nor any
famous reality shows donating all of their funds to the ALSA or even
the MDA-ALS Division. Sure, you have Curt Schilling and Mike Timlin,
pitchers for the soon to be crowned World Champion Boston Red Sox,
they only do it locally, in MA. People with ALS need to have someone
bring them to the national limelight, and I am the person to do it.

How do I propose to accomplish this? Glad you asked…(insert
appropriate drum roll sounds here)

Announcing the "Rolling Over ALS Tour". What is that? On April 19th,
the final Florida Walk to d'Feet ALS walk, I will leave Orlando, FL
with my father-in-law riding a bike alongside me, and my wife
trailing behind us in the van to go to Washington, DC for the Opening
session (Roll Call) of National ALS Advocacy Days. Something needs to
be done in dramatic fashion for ALS to get on the map. Lou Gehrig
gave his name to this disease over 60 years ago, and yet it is still
considered an "orphan disease", could it be because of the orphans it
leaves behind. If you believe the estimates of people dying from ALS,
since Uncle Lou died from ALS, enough other have died from ALS to
cover the population of Miami, FL. And I think the estimates are way
off…I think the total would cover FL from I-4 south. The people that
truly know me, know I am not the type to sit around and wait for help…
I go get what I need…and WE need some National ALS attention. This
ride will not be about me getting some media attention thrown my way;
it will be about ALS getting some media attention thrown ITS way.
Sure, I'll go on Oprah if she asks, yet I will not let her make it
about me and my challenges…it will be about ALL people with ALS and
their challenges. Maybe then, we can get something done about the
lackadaisical approach that people have about this non-discriminatory
disease.

Rolloverals.org is the website for the trip. As with any website, it
is in its early stages, it is a work in progress. I will set up an
email list for anyone that wants to keep up with the preparations for
the trip and I will send out emails from the road as often as I can,
and when I get to DC, I will post all of the pictures I take along
the way. I have 22 days to travel 940 miles, I am planning on
traveling about 8-10 hours a day, sleeping in hotels along the way…
and doing it with 2 days to spare. I openly invite PALS, or anyone
else that wants to join in honor of a PALS, to join me through their
towns. Hopefully, the whole ALS Advocacy Contingency can join
together to roll into DC. Maybe then WE will HAVE A VOICE…

Living despite ALS,
Ken P
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Old 04-18-2008, 02:45 PM #2
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Ladies and Germs,



It’s here. The day y’all have been waiting for. Yours truly is taking the trip of a lifetime. Man, it has been a hectic last three weeks, watching Glenda run around like a chicken with her head cut off has really been tiring for meJ. Actually, I’ve been conducting interviews and being filmed for TV news. So far I have interviewed with News 13, Channel 9 (an ABC affiliate), WKMG Local 6 (a CBS affiliate) and the Orlando Sentinel…look for that one tomorrow.



So this is the schedule of events. We will get up at 6am (I thought I was done with getting up that early) tomorrow morning. We will take part in the Walk to Defeat ALS in Orlando’s Blue Jacket Park. Around noon I will head out to Washington DC, expecting to arrive on May 9th or 10th, depending on the weather. I will update a blog daily, you can find it at www.rolloverals.org and selecting the daily journal link. You can post to the link too, so if you have any comments or questions, leave them there and I will get back to you as soon as possible. If anyone wants to join me for part of the ride let me know and we will make arrangements.



OK, this is the sappy part. When being interviewed for one of the TV stations they asked me what I wanted to do when I had ALS. I wanted to run and hide from everyone, which is what I did. I probably ran and hid from some very good friends of mine, and for that I apologize. I won’t make any excuses, if you sent me an email and I didn’t answer, send me another one…I will answer it when I get a minute.



Sorry so short, I got another interview at 9:30 with Fox 35. Keep me and my family, including my buddy that just had his dad pass away, in your prayers.



Love y’all



Living despite ALS,

Ken Patterson Sr

kensr@kensjourney.com

http://kensjourney.com

How can we connect the dots if we don't collect the dots?
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Old 04-19-2008, 02:13 PM #3
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video
http://www.cfnews13.com/uploadedImag...pshot(421).jpg

Man Kicks Off Wheelchair Ride To Washington For ALS
Saturday, April 19, 2008 1:42:45 PM
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ALS Walk
ORLANDO -- Hundreds of people in Orange County hit the road at Blue Jacket Park as part of a walk to raise awareness for Amyotrophic Lateral Sclerosis, better known as ALS, or Lou Gehrig's Disease.

Ken Patterson, who suffers from ALS, had a much longer journey planned.

The former Army sergeant began his 940-mile journey by powered wheelchair to Washington, D.C., to bring more attention and awareness to his disease.

Patterson planned to travel 50 miles and 10 hours a day, carrying a letter from others with ALS, detailing their struggles.

Patterson's wife, Glenda, said it was a simple reason for Ken's long journey.

"Raise awareness for ALS. Too many people don't know what it is, and there's no cure for it, and we want researchers to find a cure for this disease," Glenda Patterson said.

Patterson's sendoff was part of a ALS Walk that helped raise over $100,000 for ALS research.

http://www.cfnews13.com/News/Local/2...n_for_als.html
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Old 04-25-2008, 07:29 AM #4
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Hi everybody! Seems like forever since I've been here. (PLM) (Ken and Glendas kids above) Yes that was Cedric and I tagging along with Ken, the wild man! It was quite an emotional send off. Ken was awarded a national award for courage, from the ALS Association as we left. Nothing like a little emotional liability before you leave. Shwew! Add to that we lost two pals from our group last month. I know that fueled Ken's determination.

Our group coordinator, Rhonda Rittenhouse, Cedric and I Followed Ken about 5 miles. We were pulled over by the police for going too slow. LOL! We were forced to ride the sidewalks. In the first hundred yards Ken went off and got stuck... so much for the permission from that town. I hope that doesn't happen again. I don't think Glenda could pick him up. It took two of my brothers. It was really hard to watch them go off alone.

As for the batteries... after the walk, and the beginning of Ken's journey (about five to 7 miles?) he was down to 30%. He has two more chairs. But no extra batteries. Rhonda said it best... Ken, I don't know how religious you are... but these will be some god days for you! I hope some of you can join in and be a part of this journey. Roll on brother!
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Old 04-25-2008, 07:31 AM #5
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any ken sighting yet, anyone planning on meeting him along the road to the white house ?

Rolling Over ALS Tour http://www.rolloverals.org/
Rolling Over ALS Tour blog http://rolloverals.blogspot.com/

0. Orlando, Florida
1. Orange City, FL
2. St. Augustine Beach, FL
3. Jacksonville, FL
4. Brunswick, GA
5. Hinesville, GA
6. Statesboro, GA
7. Allendale, SC
8. Orangeburg, SC
9. Columbia, SC
10. Pageland, SC
11. Albemarle, NC
12. Greensboro, NC
13. Danville, VA
14. Lynchburg, VA
15. Charlottesville, VA
16. Warrenton, VA
17. Arlington, VA
18. Washington DC
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Old 04-25-2008, 07:32 AM #6
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Must see videos...
Created by Glenda
This is the story a local news station did about ALS and the Rolling Over ALS Tour... you gotta watch this one...it is really great.

http://www.wftv.com/video/15958318/index.html

Here is another one, not as good but it is still coverage...

http://www.cfnews13.com/MediaPlayer2...SWalk_04192008...
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Old 04-25-2008, 07:33 AM #7
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ken is in
http://www.mapquest.com/mq/7-50XtP6TtkipB1TCA
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Old 04-26-2008, 10:03 AM #8
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Floridian/U.S. Army vet to spread awareness about ALS
FROM STAFF REPORTS Gulf Breeze News news@gulfbreezenews.com


An Army Veteran with Amyotrophic Lateral Sclerosis (ALS) will travel to the nation's capitol by wheelchair to help find a cure for Lou Gehrig's Disease.

Wheelchair-bound Ken Patterson, a man living despite having ALS, also commonly referred to as Lou Gehrig's Disease, will embark on a 20- day trek traveling by wheelchair to deliver a message to Congress: Veterans are two times more likely to be diagnosed with the progressive, neurodegenerative muscular disease than those with no history of military service.

On April 19, Patterson will begin the 940-mile journey at Orlando, Florida's Blue Jacket Park.

The journey will commence immediately following The ALS Association Florida Chapter's Annual Walk to Defeat ALS. The walk will raise money for research and patient services for people living with ALS in Florida. Patterson will cover nearly 1,000 miles beginning on April 19 and will conclude at the nation's capital on May 11. May is National ALS Awareness Month.

A U.S. Army veteran who specialized in safety training, Patterson, 39, will attend The Association's National Advocacy Day and Public Policy Conference in Washington, D.C., where he will visit his elected officials and advocate for issues directly affecting ALS patients. Although ALS can strike anyone regardless of age, sex or origin, those who have served in the military are at a greater risk of developing the disease.

The fatal neurodegenerative disease is striking at our nation's heroes the hardest. However, the reasons are not known at this time.

The chapter has proclaimed Patterson and his caregiver, Glenda Patterson, the two people in Florida who best exemplify the spirit of "ALS Across America" during ALS Awareness Month. The national campaign recognizes courageous individuals with ALS and their caregivers who are role models to people with Lou Gehrig's Disease. These special individuals reflect the spirit of the organization as they make a positive difference in their community by expanding awareness of ALS and embodying the spirit of living life to the fullest.

The 20 days of travel will take Patterson through cities and military installations between Orlando and Washington D.C., as he educates others about ALS. Patterson also plans to meet other patients living with ALS along the way and carry their messages to Capitol Hill.

Patterson plans to film the journey and use the footage to inform and educate people about the disease.

"The tour is not a fundraising event: it is strictly intended to raise awareness for people with ALS," Patterson said. "However, we realize that we need financial assistance to make it happen and have collaborated with The ALS Association Florida Chapter to establish a research grant with any monies remaining after the tour."

Throughout ALS Awareness Month, The Association and its nationwide network of 41 chapters will reach out to communities across the country to educate the public about Lou Gehrig's Disease and urge people to join The Association in the fight to make ALS a disease of the past.

The Association's National ALS Advocacy Day and Public Policy Conference, which has grown to be the single largest gathering of the ALS community, and is part of ALS Awareness Month, will be held this year on May 11-13 in Washington, D.C.

The Association is the preeminent leader in the fight against Lou Gehrig's Disease. The mission of the organization is to lead the fight to cure and treat ALS through global, cutting edge research, and to empower people with Lou Gehrig's Disease and their families to live fuller lives by providing them with compassionate care and support.

ALS is a neuromuscular disease with no known treatment or cure. It robs the body of the ability to walk, speak, and eventually breathe.



http://www.gulfbreezenews.com/news/2...ealth/035.html
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Old 04-26-2008, 10:05 AM #9
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tonight stop,Orangeburg, SC
http://www.mapquest.com/mq/6-dFg8
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Rolling Over ALS Tour blog


Thursday, April 24, 2008
WANTED - Dead or Alive - day 5
Today we were greeted by two of Georgia's finest...NOT! The first officer was very nice; however the second one was on a power trip and was a real JERK. I was forced to give in to the powers that be and ride in the van. Thankfully it was a very short distance to the hotel.

This wheelchair adventure has made me realize even more how our society is so busy and preoccupied with their fast paced lifestyle that whenever they are inconvenienced (for example by the guy driving down the road in a wheelchair) they get absolutely crazy. We were called all kinds of obscenities and received the "one finger wave" more times than I care to count.

Posted by Rolling Over ALS Blog at 3:26 PM 2 comments
They all sound like me - day 4
Today we entered Georgia, where they all have an "ALS Accent" without the muscle atrophy. While the traffic was not an issue, we had a lot of long, VERY long stretches of road with NOTHING on them. The flashing lights we put on the van and trailer stopped working today so before we head out tomorrow we have to check the fuses. The chairs are holding up good, with the exception of the one that has been acting up since day one. The Georgia ALSA Chapter has put us in contact with someone who can take a look at it for us, when he found out I knew Steve S he packed up his tools and left [thanks Steve ].

Posted by Rolling Over ALS Blog at 3:17 PM 0 comments
Leaving home (again) - day 3
This morning I woke up at 7:00AM so I could be ready to ride with my escorts who were to arrive at my hotel around 8:00AM. We rode up A1A then entered to old St Augustine area. This is where we were greeted by bicyclists asking what was going on then about 7 of them asked if they could ride along with us for a while. Unfortunately, not everyone was as pleasant as our tag-along bikers. One lady in a large SUV tried to cut in between the leading officer and the van Glenda was driving...the problem being I was the one in the middle of them. I thought Kevin was going to jump out of his police cruiser while it was still rolling to let this moron have it. We also had several of the passers by honk unfriendly greetings to us. We passed by the fire station I used to work at and then we stopped at a local restaurant for lunch.

After lunch we headed into Jacksonville. I thought the afternoon was never going to end. I realize now haw nice it was having the police escorts. We arrived at the hotel around 8:00PM...making for a very long 12 ½ hour day.

Posted by Rolling Over ALS Blog at 3:13 PM 0 comments
Coming home - day 2
Well our morning started out slow and uneventful. There were cars flying past us with total disregard for the vehicles in the other lane.

Around 4pm I entered St Johns County, which is my old stomping ground from my firefighting days. We received a police escort the final 21 miles to our hotel. We were within a half a mile of the hotel when the third chair started flashing that I had a low battery. I barely coasted into the parking lot of the hotel where I was surprised to see a former coworker and dear friend there to welcome me.

Posted by Rolling Over ALS Blog at 3:11 PM 0 comments
Bon Voyage - day 1
The Walk to Defeat ALS in Orlando was a huge success. I, however, didn't get to enjoy much of it with all the interviews and preparations that still had to be made to kick off the Tour. I didn't even get my team photo taken or get an official 2008 Walk to Defeat T-shirt. Oh well there is always next year.

At 12:00 we assembled the masses to have a send off. Before I left I was presented wit the "ALS Across America Award" which is given to somebody who embodies the spirit of ALS Awareness. I don't see where I did that, nor am I doing this for recognition for myself, but in front of all the press and onlookers I didn't figure I could refuse it. It was an honor to be selected out of the whole nation to receive this award. After my father-in-law said a blessing four of us (Denny N, Rhonda R, Cedric C and I)and our entourages left Blue Jacket Park on my way to Washington DC.

So we are driving along a four lane road... and we got pulled over for going too slow (I usually get pulled over for going too fast). They wanted us to ride on a sidewalk and I officially nominate Winter Park Fl as having the least wheelchair friendly sidewalks...I even got stuck! Everybody dropped off after about five miles and I was on my own. The moron cop that pulled us over offered some less traveled roads to use...all that did was get me lost! DONUT MUNCHERS!
I now understand why Permobil wouldn't give up some wheelchairs for the Tour...I have had nothing but problems with 2 of the chairs thus far. I thought Rhonda was just a bad driver when she kept weaving all over the place, but after I drove the chair, I found out it wasn't her. The other chair's battery lasts about 5 miles...I wasn't prepared for the sudden stop when it ran out of juice.

We got to the hotel about 10pm and I was asleep before my head hit the pillow...and sunburned from head (what part of it my Red Sox cap doesn't cover) to the top of my foot (my shoes were on, so it wasn't to my toes).

Till tomorrow,

Ken
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Old 04-28-2008, 06:23 AM #10
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Sunday, April 27, 2008
The curse continues - day 9


My poncho is getting quite a workout. Yesterday there was just a light mist of rain, however today it was raining cats and dogs and cows and horses. On top of that there was hail and lighting too. I was forced (for safety reasons) to sit and wait for the worst of the storm to pass. It was just a yucky day to be out driving the roads today…especially in a wheelchair.

Posted by Rolling Over ALS Blog at 8:48 PM 0 comments
She is not the Good Witch after all - day 8



Just before I fell asleep last night I mentioned to Glenda how we had been blessed with wonderful weather. As any good public safety professional knows you don’t say something like it has been quite or there hasn’t been any rain unless you actually want it to happen. Glenda said “Yeah, there hasn’t been any rain” and that did it. We had rain…ALL DAY!



We pulled into Allendale, SC this evening and I was tired and soaked (thanks G) only to find that the hotel we were scheduled to stay at was shall we say less than up to code. They had a team of cockroaches on staff to carry our bags up…not to mention that I was starving and there wasn’t so much as a Micky D’s to get a bite to eat. So we opted to drive ahead to Orangeburg and tomorrow morning we will double back to ride the route…not practical with the price of gas I know, but I just don’t think I could have slept there.



I had the opportunity to meet a very special family today. A mother who lost her son to ALS 6 years ago read about the Tour in a Savannah newspaper and asked her daughter-in-law to set up a meeting…that she couldn’t explain why but she HAD to meet me. It was an honor to meet this mother and one of her sons and daughter-in-law. She wanted me to have a lap blanket which had belonged to her beloved son. These will be cherished memories of this adventure. Although it gets frustrating out here, especially with all the one-finger salutes and horn-y drivers, a visit like this makes the whole trip worth while.

Posted by Rolling Over ALS Blog at 8:07 PM 3 comments
We're in the Army now - day 7



Upon exiting Hinesville today we drove through Fort Stewart. Military housing has come a long way since my Army days in the late 80’s. Everyone who passed us today was very supportive with friendly waves and thumbs up’s. Even the Ft. Stewart police were friendly and helpful by sending out officers to check on us and make sure we weren’t having any problems. The weather has been good…a bit on the hot side but not raining.



Going into Statesboro I had a few issues with the sidewalks…there were on ramps but I would have to double back because there were no off-ramps. As any of you who have tried to navigate the sidewalks are aware of…there is nothing more frustrating and downright stupid as poor planning (maybe Steve S can get on that one).

Posted by Rolling Over ALS Blog at 7:56 PM 0 comments
The people you meet - day 6
I was not going to have much to tell about the day, since this was a planned non-travel day. We were hoping to be able to visit Fort Stewart; however that was not able to be arranged. I took a much needed nap and tried to catch up on some emails and writing this journal.

This evening we went to dinner and met a family that turned out to bless us as much as they said we blessed them. The restaurant was a Japanese Steakhouse, where they cook the food right in front of you and perform little tricks as they cook. We were seated with a family of three, mom, dad and their little guy that looked about 7 (we later found out he was only 5). During casual conversation “Are you from around here” kind of thing…we had the opportunity to share what we are doing and why. As all you guys know, I am a very shy person, so the conversation was hard for me to carry on. Come to find out this young mother has been battling breast cancer (in remission for 2 years), so she had an emotional connection to the “fighting attitude” I share with them. So as we continued eating and talking (no, I didn’t talk with food in my mouth) the young man got up, to go to the restroom I assumed, and came back about 5 minutes later. As we said our goodbyes the young lady came over and gave me a hug, then her son followed suit and her husband shook my hand and thanked me. When the missus went to pay the bill, we found out that the husband didn’t go to the restroom, he paid our bill. Why couldn’t he be one of Georgia’s finest? Come to think of it, the whole family was Georgia’s FINEST.
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