ALS/MND Support Group Forums

Advocacy Day

indigosd — Sun, 21 Mar 2010 16:58:49 GMT

I thought that this might be helpful for those of you planning to attend. :):) We won't be going, no way to pay for the trip and expenses.

REMINDER: Advocacy Day Deadlines

Dear Kay Marie,

Have you registered to attend the 2010 National ALS Advocacy Day and Public Policy Conference May 9-11 in Washington, DC? If you plan to join us in the nation's capital, please register and reserve your hotel room TODAY! The deadline to receive reduced registration and hotel rates is Friday, April 9, just a few weeks away.

Your participation in the Advocacy Conference is needed to help make a difference in the fight against ALS. Successes like establishing an ALS registry, securing more than $400 million in funding for ALS research, and eliminating the 24-month Medicare waiting period could not have been accomplished without the efforts of individuals who have participated in Advocacy Day. However, the ALS community needs your help today more than ever. So please plan to join us in Washington this May!

Early Bird Registration Deadline: Friday, April 9
You must register by FRIDAY, APRIL 9 in order to receive the reduced conference registration rate of $175 ($350 for non-affiliates) and $25 for children age 3-16. Fees for registrations submitted after April 9 are $350 for attendees affiliated with The ALS Association, an ALS Association Chapter or other affiliated organization, $700 for non-affiliates, and $50 for children.
Conference registration fees are waived for all people with ALS and for a caregiver traveling with them to the conference.
Click here to register: 2010 National ALS Advocacy Day and Public Policy Conference.
Hotel Reservation Deadline: Friday, April 9

April 9 is the deadline to reserve a hotel room at the reduced conference rate of $219 + tax/night. After the deadline, this special rate no longer will be available to attendees. Moreover, the hotel no longer will hold rooms specifically for conference attendees and it is possible that, after the deadline, the hotel will not have rooms available during the conference dates or they may be available at much higher rates.
To reserve a hotel room, please contact the hotel directly:
JW Marriott Hotel
1331 Pennsylvania Ave, NW
Washington, DC 20004
Phone: (202)-393-2000

ADA Rooms

The ALS Association has reserved ADA rooms at several different hotels in Washington, DC to help ensure that all PALS who want to attend the conference have access to ADA accessible accommodations. If you or your Chapter wish to request an ADA hotel room, you must contact Mary Wisniewski, event planner for The ALS Association's 2010 National ALS Advocacy Day and Public Policy Conference. She can be reached at marywisniewski@comcast.net or by phone, (202) 746-0043. Please do not contact the hotel to request an ADA room as the hotel will not be able to guarantee your request.

Click here, http://www.alsa.org/files/pdf/advoca...V_Brochure.pdf, to see the agenda for this year's conference and plan to join us as we continue to create the roadmap that will lead us to a treatment and cure for ALS.

We look forward to seeing you in Washington this May!

Trying to help my dad

Emily Pate — Sun, 21 Mar 2010 15:51:52 GMT

Hello everyone,
My father has ALS and was diagnosed in June 2008. I have visited this site a few times since then, and appreciate everyone's thoughtful & insightful comments. My husband and I, along with my brother and his wife, moved to Baltimore to help my mom care for dad. I finally decided to register on this site this morning because dad is getting a lot worse and my family and I seem to have unending questions about how to help him.

Now, he cannot move any part of his body but his head and his hands, but his hands are clawing up now, which makes moving his electric wheelchair very difficult. He has terrible blisters on his inner thighs. He's had these before but never so bad and never on his thighs. He has a feeding tube but doesn't really use it because he loves to eat and loves having the family around eating together with him. Of course eating exhausts him but we want him to continue doing what he loves. Breathing is a lot harder for him now, too. As is talking.

I guess I should get to my questions! Last week the hospice nurse told my mom that we should be prepared for another year for Dad. And this may sound horrible, but we can't imagine another year of this. Dad is in so much discomfort and so very tired and weak. We just don't want him to suffer any longer. A year sounds so long... The nurse based this comment on the fact that dad hasn't been through the secretion stage yet. But I was under the assumption that not all ALS patients show that symptom. I thought all of that comes with the bulbar form of ALS, which my dad doesn't have.

Also, my brother and I were upset that the hospice nurse made this prediction about my dad's life expectancy to my mom. I don't believe she's ever worked with an ALS patient before and we don't feel she's qualified to make such a statement. But since Dad is so weak, he hasn't been to the ALS clinic at Johns Hopkins in a very long time (his last appointment was more than 6 months ago) so it's hard to say how he's progressing.

So I guess my other question is just how to make someone comfortable at this stage? I suppose he may have to stay in bed soon? He doesn't want a trach - so that option is out for him. My mom feels she cannot afford round-the-clock care (a caregiver comes in the morning & at night) but are we going to be at that stage soon too? We think that morphine would make him more comfortable but Dad resists taking it b/c it causes him severe constipation.

My father is the most amazing person I know. He is so kind and humble and never complains. He has been such a wonderful father and husband - it's so hard to see him so uncomfortable. He doesn't talk to us about what he wants or how he wants his life to end. I know we need to have that conversation but it's so hard to even think how to start it. The hospice social worker wants to have a family meeting which I'm guessing will facilitate this discussion... But my mom is worried that they'll recommend placing him in a nursing home which she refuses to do.

I apologize for such a long post, but appreciate any thoughts you all may have about my questions. Thank you all so much.

Supported Treadmill Ambulation Training

rmstudier — Sun, 21 Mar 2010 14:52:32 GMT

Does anyone know about this therapy? It's being done at the Carolinas ALS Center.

Is this a symptom of ALS?

LovemyPALS — Sun, 21 Mar 2010 04:01:04 GMT

My father was diagnosed with ALS about 3 years ago. He has recently experienced 'gas' pains in his stomach. He says he doesn't know if he has to burp or pass gas, but it is extremely uncomfortable and painful for him.

Could this be from the medication? muscles breaking down?

Any info would be great!

ALS/Parkinson's

lisaann1170 — Sun, 21 Mar 2010 03:26:56 GMT

I've never tread in this area as long as Dad was my focus. Now that he has passed, I and my aunt (Dad's sister) are wondering if there is a connection between ALS and Parkinson's Disease. I've done some Googling, but come up with little.

Dad had ALS. His dad (my grandfather) supposedly had Parkinson's but because he was poor, his health care was insufficient. He had no tremors, so his Parkinson's would have been somewhat atypical. He passed in 1975. Dad's uncle died in an institution (again very poor) of unknown causes in the 70's, although he had been institutionalized for years.

Dad has few relatives. He has one brother who is in his 70's and is healthy. His sister, in her 80's, is healthy. Dad has 10 healthy nieces and nephews from those siblings and one healthy child (me - knock on wood).

In sum, there are no other cases of ALS or Parkinson's.

So, has anyone ever heard of a connection where one makes the other more likely? This "feels like" two random cases (Dad and Grandpa) of unfortunate neurological illnesses, but I've wondered.

When to decide PEG isn't working?

brooksea — Sun, 21 Mar 2010 01:29:42 GMT

I'm talking about infection and intolerance and being uncomfortable. My husband is now red and swollen around the Peg, despite taking care like we should. He says it has always been "uncomfortable." Which, I suppose it would be with a hole in your body and a tube inserted.

If he is telling me this, there is a real problem. He doesn't EVER complain about pain like a "normal" person would!

Anybody have any thoughts? Please?

Upper/lower motor question, please

SilverLining — Sun, 21 Mar 2010 00:48:56 GMT

Hi,

I was reading about upper/lower motor symptoms.

Would anyone know,

Can they come on gradual or will they be presant at the time of weakness?

If weakness was presant in a limb & emg was normal & Dr did not note any upper/lower motor nueron symptoms, then weakness is not due to als because no upper or lower motor symptoms are preasant but is it possible that they come soon after?

Or does upper lower motor symptoms show at same time as weakness?

thankyou so much, again :)

Hello From The UK NW lancashire

mark1 — Sat, 20 Mar 2010 22:20:41 GMT

Hi

I just joined tour site this evening, as i have just been told by my Mum she has been Diagnosed with NMD.

I'm gutted, but I'm hoping to find Support and Good info on here.

Mark UK

No help getting diagnosed

cjanderson — Sat, 20 Mar 2010 21:04:25 GMT

I was initially diagnosed by a neurologist in December 2009 and have been waiting to be seen for a 2nd opinion since then. The doctor with whom I made the appointment said he couldn't see me until March and then cancelled that appointment and re-scheduled for June. Are they all afraid of this disease? Is it this hard for everyone to be seen? Could it just be my insurance is bad? I don't get it. Help!

first clinic visit, Yea

bythesea — Sat, 20 Mar 2010 19:27:31 GMT

This week my wife drove us into the Lou Gehig, ALS center at CUMC, NYC. We were tentative about this but were wonderfully suprised. The doctor and staff couldn't have been nicer. The help they are offering is overwhelming

Now I know why so many of you are willing to drive long hours. I'll be going at least once every three months. It was so nice to find someone who cares for ALS people. We left the doctor in tears and hugs for all their consideration

The doctor said I can eat all I want and that's just what I going to do

Antidepressants

sand — Sat, 20 Mar 2010 17:25:48 GMT

Is anyone on antidepressant medication? After visiting my family doctor last week for a blood pressure check up and crying during the visit, he thought I would feel much better if I took Zoloft.* Is there a natural product on the market that would help one feel better and sleep better without getting addicted?

Hello

Robert Redmond — Sat, 20 Mar 2010 06:07:31 GMT

This is my first time to these forums.

My name is Robert and about 2 weeks ago my brother was told he was in the last stage of ALS. He had lost pretty much all control of his legs and most of his arms/hands at that point.
Originally, a year ago, he was tested by his neurologist who told him he didn't have ALS. His doctor's best guess eventually was MG and my brother was more than relieved it wasn't ALS. But.. finally at the Mayo Clinic in Jacksonville they told him that he did indeed have ALS.
My brother is currently undergoing breathing treatments and always has to be supplied oxygen. He began having problems with his legs roughly 15 mths ago, his arms maybe 9 mths ago. Just a month ago he began to have a harder time talking and swallowing. I can only talk to him for limited amounts of time since it is a strain for him to talk.
This is completely breaking my heart.
To make matters worse, I had noticed a little craming in my left hand along with some weakness I hadn't ever noticed before a couple of years ago. Originally I just had a harder time holding my cigarette but then later it seems tiring to use my left hand to clip the nails on my right hand.
I have had plenty of muscle twitching in the past but it seems since I found out my brother has ALS and twitching is a cause, all of the sudden I notice different muscles all around my body twitching.
Between being so sad and depressed over my brother's condition, I now have the extra worry that I too have ALS and I have seen first hand what it does to someone and I'm pretty terrified.
Me and the wife were planning to have a baby but that is on hold for now. If I have the genetic version I don't want to pass this on.
I'm 40 btw, my brother is 39.

Well, a big intro to go with my hello :) I'll probably be visiting this forum a lot in the future.

To everyone who has ALS and reads this I am so sorry for you, my brother and anyone else who goes through this. I hold out hope that my brother could be one of the 10% that survives a long time. Despite getting diagnosed with ALS 2 weeks ago he and his girlfriend are planning on getting married this next Tuesday. She is determined to keep up his hope and do what she can to make sure he stays happy. He is so blessed to have met her. They actually met online when he was only first noticing his problem and she has stuck with him through it all and will NOT abandon him now. I love her for that :)

Well, didn't mean to type this much.. so.. hello everyone :)

Love? Or something more?

pepsiman — Sat, 20 Mar 2010 03:00:44 GMT

I'm putting this out here because it's a big part of what keeps me going.

I'm a very spiritual person, not religious, that just doesn't resonate with me in any meaningful way. I do however believe in deep connections that go way beyond our perceived reality. Many, many things have happened in my life that truly cannot be explained and I just can't believe they are all just chance. I'll start with when Liz and I met.

Liz was the college roommate/best friend of the woman who would later become the wife of one of my best friends. Cathy (Liz's roommate) invited Liz up to her summer cabin for a weeks vacation a couple of years after they graduated (it was admittedly an attempted matchmaking on Cathy's part). I was invited down to the cabin for a beer the day Liz arrived in town (neither of us knew about the matchmaking part). The moment I saw Liz, I, 1. had some sort of deep recognition, like we already knew each other intimately, although I had never before seen her or even a picture of her. and 2. Knew for FACT that this was the woman I was going to marry. Actually getting together took another couple of years.

Later, after we had moved in together and were planning on getting married, we were having a little party with a couple of her friends from school (she was in grad school at the time) and the subject of how we had met came up. Liz proceeded to tell them how she knew I was the one she was going to marry the moment we met. Of course she added, that at the time, she really wasn't all that impressed with me and couldn't imagine why she would have had that thought. Now Liz wasn't spiritual. She was going to grad school for philosophy and really didn't have any spiritual beliefs. Nevertheless, when we talked about it later there was no denying how well both of our experiences at that first meeting meshed.

If anybody's interested, I'll expound later on what she told me was the one thing that actually convinced her to marry me.

Dick

New to This

LADale — Sat, 20 Mar 2010 02:33:26 GMT

Hi All,

I have Fibromyalgia and Peripheral Neuropathy that is becoming more frequent and seems to be advancing.
A few years ago, my left arm became paralyzed for 2 1/2 months, but fortunately the nerve regenerated and I regained use of my arm. In the past month, the numbness has become very frequent, and I know I can no longer brush aside the symptoms; it seems obvious it's likely to happen again at any time, and will just be a surprise which part of my body will be affected this time! YAY.

At any rate, I thought it was time I started talking to people with similar conditions, and although I don't have ALS that I'm aware of, this forum seems to be about right, or a good place to start.

I hope to gain more knowledge about ALS and other motor neuron diseases, and also hope to be a good friend and listener on the site.

When my tongue (yep, my tongue...so many fun surprises with this thing!), became so numb this morning I could barely talk, I knew it was time to interact with others, as it's beginning to scare me. Don't like to be scared or even say I am, but there it is.:???:

I live in Arizona, USA and look forward to getting to know you all.8)

Lisa
Arizona (AZ), USA

Hello

jimth — Sat, 20 Mar 2010 01:58:28 GMT

This is my first of what I am hoping will be many posts for years to come. I was diagnosed with ALS in Sept. last year after over 2 years of tests. Right after the news my wife started searching the web for answers and support and came across this ALS forum. She has been so inspired by what you all have to say and has been trying for months to get me to logon and read your posts. I have put it off because I was afraid of what I might read, boy was I dumb for waiting so long. I spent a few hours today reading the post and find them insightful, inspiring and in some cases humerous. I can't wait to start communicating with all of you and asking question so I can tap the knowledge you all have.

Again, it's great to finally be registerd and a part of this wonderful site.

Jim