New? Introduce Yourself - Say Hello

[MtPockets]

As for me I like to eat moon pies and coke, with a little devil food cake on the side. This might shorten my life by a month or two, but what the heck, what's living, without enjoying life? Who wants to live eating seaweed, and taking those nasty supplements all the time. What's wrong with people? Are they afraid of dying or something? Now, if I live another 5 years, does this mean everyone will start following my diet? I don't think so.

(Frizzel, I'm not responding to you, but to a deleted scam link.)

Just kidding, trying to make a point here. Just because one person feels they can live a week, month, or a year longer by using a special diet, then if that is what you want, then I say go for it, but don't try to sale me on buying into some pie in the sky program just because maybe one person lived a little longer. The nature of ALS is it is not predictable. Everyone is different.

Show me proof where 200 people had their disease cured or progression stopped and the doctors and scientists have published papers publicly, showing the proof, and then I might consider using the program.

Until then I'll enjoy what time I have left on a normal diet eating what I can buy at the grocery store.

To each his or her own.

God Bless
Capt. AL :)

[Frizzel]

I also eat whatever I want. Before I got cancer 15 years ago I was Vegan...a type of vegetarian. Look where that got me. Now I eat whatever I want. I do feel better when I eat a balanced diet with the above supplements and YES SIR REEE that Coke with a Taco Bell Burrito followed by a mini Snicker is right up my alley. ha ha! I don't sweat the small stuff. Personally I think stress is the biggest culprit. You're right...Enjoy each day! Hummmmm...I think I'll go have some fresh strawberries and vanilla ice cream. It's summertime!!!!! :) Cheers! Frizzel

[cukita99]

my name is cukita99 and i want to say hi to everybody

[MtPockets]

Welcome to the forum, so glad you found us. I hope you can join in and be a part of our little corner of the world.

God Bless
Capt. AL

[jimercat]

cukita99

Welcome to the forum, sorry you had to join under such circumstances.

Hope we can provide some support.

CJ

[Frizzel]

Hi Cukita,

Welcome...We all have our stories here. Life is full of surprises...We finds ways to cheer each other on in small ways. You're welcome to share about yourself or not...just know this corner of the world is a little like the eye of the storm...peace.

Frizzel

[Al]

Hi and Welcome. Do you mind if we ask if you have ALS or is it a relative or friend?
AL.

[NvrGiveUp]

I don't know if I'm doing this right... but here goes. Just wanted to say thanks to all of you who have set up this forum, and to all of you who have shared your stories here. I also appreciate the information sharing when it comes to the "treatments" that one might consider. I do not have ALS, but my partner does. She is only 33 years old, and this has been devestating of course. That is such an understatement. I am so moved by her bravery and determination to live each day to the fullest. She has avoided doing "major" research about ALS because she doesn't want to put ideas into her head. She does know enough though to know that the fight will be a fight for her life. She started having little twitches everywhere about two years ago. No one knew what it was and told her that she would be just fine. She just needed some rest, they said. Some vitamins too. Well, about a year ago she got the semi-official diagnosis of ALS. It was the disease that I knew might have been a possibility, the one that I prayed would not be the diagnosis. We got ourselves prepared a little bit before finally hearing her doctor say it. We did this by agreeing that even if he said ALS that we would defiantly say, "oh yeah... that's all you got? Bring it!" My partner, who I will call "T", has stayed defiant, and so have I. We really feel that our attitude is very important. She refuses to give up.
She is still able to walk and talk, but needs help getting dressed and combing her beautiful curly hair. We find that making jokes about anything and everything and laughing as much as possible really helps too. For instance, I will pretend that I just LOVE to dress her and comb her hair and that she is SO NICE to let me do it all the time. Yes, kind of geeky, but hey, it makes us laugh. She is such a soldier, she still goes to work 4 days a week, and has to be there at 4 AM! I am so thankful that her workplace and coworkers help her a lot at work, still allowing her to keep her insurance. In two months I will be graduating from college and I hope to have a nice job so that she will not have to work at all, unless she wants to (which she probably will!) She does go to physical and occupational therapy every week. HEADS UP! Make sure you go to a physical therapist who has experience with ALS patients. At first the place she was going to was having her do exercises that are not good for ALS patients (like one shouldn't do too much weight lifting type stuff!) Range of motion are the main types of exercise to do. Just try to find one with experience.
As for treatments ... we feel that praying to God and going to church has been the best for us. Nothing like a terminal illness to make one find God again. We don't really believe in organized religion (kind of hard when you're a gay couple and most churches won't accept you). Hope that I didn't scare anyone away by sharing that I am a woman and not a man. That's a whole other ball of wax that complicates our situation even more since it is very hard to find companies that have healthcare policies that include us. Anyway, our massage therapist told us about the church we go to now. We are thankful to have a safe, all-inclusive place to worship God and enjoy the support of our church family, too. So our reccomendation is a defiant, positive, maybe a little crazy attitude and connecting with your spiritual side again. <-- Especially since none of us are getting out of this life alive, as my dad loves to remind me.
Thanks for reading this post and getting to know me a bit. I hope to get to know some of you also. Never give up. 8-)

Pam

[jimercat]

NGU-

So sorry you are having to go thru this! It seems that PALS are getting younger and younger!

You are to be commended for helping your partner. Anyone that can deal and suffer with this is an angel.

Your tips for dealing with this are thoughtful and helpful!

Please post often and share. We need it.

Welcome!

CJ

[Frizzel]

Love your screen name. Once you get to know many of us on this forum, we're all a little quirky. :mrgreen: Since she does have the ALS diagnosis, I would encourage you to start looking at ways you will communicate when she can't talk. Wish it wasn't so, but for the most part it is. I have met a couple of people who lost their spouses to ALS and although I have the benign slow form called PLS, ( I go to the ALS clinic to finalize whether or not it is now ALS Thursday) I'm getting ready for what lies ahead. In November I was swimming in 6 ft waves in Mexico and now I'm in a wheel chair. That's not to scare you as much as share, "I'm finding the peaceful place in my faith in the midst of this storm". My closest friends and family are also getting ready for some HIGH winds. All the best to both of you as you venture this road together. Greet your partner for me...NvrGiveUp ...
Frizzel

[Al]

Hi Pam and welcome. Sorry for your partners problems but you have found a good place here with some very good people.
AL.

[NvrGiveUp]

Thanks for the welcome and the support. Right now T is having some trouble coughing. This worries me. I am also concerned that her breathing is not as deep as usual, this scares me too. I want her to see her doctor soon to talk about this because I think that it might be time for her to use the breathing machine at night. She of course doesn't want to go to the doctor because she doesn't want to hear bad news about maybe her throat being affected now. She still eats and drinks OK. When should a person start to use the breathing machine at night ... what signs are there? Even if it is true that she will have to use it soon, we're still not going to give up. I have heard so many stories about people who were on their deathbed who just never gave up, and then somehow recovered from their illness. I know this can't happen for everyone, but why not focus on that possibility. Every night we go to sleep we pray and we tell ourselves to get ready for the miracle. We don't say to ourselves "maybe a miracle will happen", we say "get ready, it's going to happen." When the next morning comes we thank God for another day in paradise and T just keeps her head up no matter what difficulty might come that day. Then we do it again. She has her days (and so do I) where we feel like crying about what might happen, but luckilly it is usually only one of us. When it is me, she comforts me with her positivity. I do the same for her. Call us crazy, we call ourselves crazy. I guess to go to bed each night with the belief that a miracle (or the start of one) is going to happen the next day is just SO MUCH better than the alternative. It's almost like the feeling when you were a kid falling asleep with the belief that Santa Claus was coming that night ... except the chances of the dream coming true are a lot better in our case. It helps us have good dreams when we sleep. Well, speaking of sleep ... it's that time... :) By the way, when I pray for T, I always start off with please keep her breathing, talking, eating, drinking, singing, laughing, yelling, walking ... then I move up to please help her to jump, skip, jog, sprint, swim, play soccer, tennis, surf, climb a mountain, horseback ride and play tambourine again soon. They say to pray for what you want and to believe that your are entitled to those desires. So when you pray, pray BIG. :mrgreen:

[Al]

Hi Pam. Tell T that needing a Bipap doesn't meean you're getting bulbar symptoms. I've been using one for 2 1/2 years now due to weak chest muscles but still speak and eat fine.
AL.

[NvrGiveUp]

Thanks Al for the info. I will tell her as soon as I can so that she won't be as scared (she is doing physical therapy at the moment.) :) Have a nice day...
Pam :)

[NvrGiveUp]

Frizzel, I was so wrapped up in what we have going on that I forgot to say to you that I'm sorry that you might now have ALS. My heart goes out to you and your family. I pray that you will be swimming like a dolphin in big waves again soon. T was just learning how to surf, it was just when her arms were starting to get weak, so she never actually was able to get up on the board very easily. We just saw that movie Surf's Up with the penguin characters... it is really cool. At the end we both almost cried because it plays that song, not sure what the name of it is, but it goes : "don't give up ... you've got a reason to live... " If you surfed before or if you like waves, I reccomend seeing the movie. :) I wish you the best that life has to offer.
Pam

[CindyM]

Wellcome Pam and T. I am glad you found us. T is lucky to have such a warm and caring partner to help care for her! Cindy

[MtPockets]

I'm sorry for you to have to be here NvrGiveUp, wowwhat a great name to chose. I know you will find a loving family here that shares in your fears, concerns, emotions, love, and your faith in God.

I also have been on a breathing machine called a Bi-Pap to help me at night for the past year and a half as AL was talking about in his post. The last time they checked my lung function I had lost 30%, but that was over a year ago. Since many of us with ALS die in our sleep, it is a good idea to encourage your partner to get a breathing function test as soon as possible as this can be very dangerous.

Also have you checked to see if you have a ALS association near you that could help you later? They have equipment that they loan out to those that need it and many other resources. You can find them at http://www.alsa.org/

God Bless
Capt AL

[MtPockets]

Here is a link that some of you may want to send to your children.
http://parentswish.com/site01/big.html
God Bless
Capt AL :idea:

[NvrGiveUp]

Capt Al,
Thanks for letting me know. She has an appointment on Monday so that we can talk to her neurologist about checking her lungs and coughing problems. You all have helped me feel better in regards to this ... taking away the mystery of breathing machines. On the lighter side of life, T and I just went fishing all day yesterday ... OK, so I spent most of my time baiting the hooks and casting while she was relaxing comfortably in a captains chair that we brought out into the water at about knee-deep level. It was an awesome way to celebrate our 3 year anniversary. It was fun, and the fish were bighting... most of the times when I would hand her a rod after casting it, I would be getting my rod ready and have to throw it down because she would frantically be calling for my help to reel in a fish. It was hilarious. Another cool thing was that the weather wasn't really supposed to be good yesterday and it ended up being beautiful. A great day. :) I hope that everyone can find some time to enjoy something they love, sieze the day.

Pam

[Frizzel]

I LOVE to fish! Use to fish quite often...especially for steelhead and salmon. I have some Indian in my dna and my grandfather taught me how to feel the line and pole. Good for you two to have some fun time fishing as well.

Met with the ALS CLinic doctor and got the results. The PLS is morphing into ALS. I do have upper and lower motor neuron involvment through the EMG, atrophy and weakness on my left side. I also have severe spacicity and cramping my my legs.

Keep faith in the Lord Pam. He sees the big picture. We only see in part. Even the most beautiful rugs and quilts were made with remnants right? I choose the light bulb without being plugged in because it takes a miracle to keep shining. BLessings and Joy. Frizzel

[MtPockets]

As I write this I have a living room full of Grandchildren that came over to take gramps fishing. As soon as I catch up on this mail I'm having them load up my boat and me and away we go out into the wild blue yonder. Gulf of Mexico style at Gulfport, Mississippi.
Of course they will have to lift me in and out of the boat, sounds like fun. I'm interested in seeing if I can still throw a rod and reel it in since I have not been fishing in over 8 months.

God Bless all, happy Fathers day, and have a great weekend,
Capt AL :-D

[hboyajian]

Welcome, Pam and T. As you have already found, this forum is a goldmine of information and friendship. It's beautiful to hear about people enjoying life together even when faced with mounting challenges. When you go for the pulmonary function tests, ask them if it is necessary yet to get the blood tests for oxygen and carbon dioxide levels. Also have them explain what symptoms to look out for if T is having difficulties that would warrant immediate attention. It is my familiy's experience that sometimes things can change quickly and it is helpful to be a step ahead in understanding different aspects of the illness. Holly

[NvrGiveUp]

Capt Al,
I hope you are having an awesome time fishing. I managed to get a really good sunburn from being too excited about fishing and forgetting to put on sunblock. Oops. :)
Pam

[NvrGiveUp]

Holly, Thanks for the advice. We will be going Monday to see the doc. THANKS everyone for all the information. :D
Pam

[NvrGiveUp]

Frizzel, I am sorry to hear the news. You amaze me with your strength. Thank you for sharing that strength. God bless and I hope that you will have a joyous day today.
Pam

[beaner1]

Hello NGU,
Welcome. As to your question about coughing and breathing - see a resp. therapist. There are exercises to do that will help with the cough, and get her blood ox. levels checked. If they are low, a Bipap (night breathing machine) will help - it's not so bad. After my husband started using his, he noticed a great improvement in his sleep, and I noticed that his color and disposition were SO MUCH BETTER! He found that he didn't feel so "foggy". It's certainly worth trying - a better quality of life is so important.

Hope this helps.
Beaner

[MtPockets]

Well, our fishing trip started out pretty good. I had 2 of my 15 year old grandsons and my son going out to one of the islands off Gulfport. They helped get me into the boat, which was quite a chore, and off we went in nice calm water. We went to an island called cat island about 7 miles offshore and caught some small bait fish and moved to a deep water location and began to fish. My son caught a sting ray, a big one that broke his rod, one of my grandsons caught a shark, and we lost another fish that we never got to see.

So far so good.

Then we went to Ship island which is about 14 miles off Gulfport, water was still calm. My son caught about 50 fish with a cast net and the winds began to increase. I fell in the boat, :shock: off the boat seat that I had been sitting on the whole trip and broke the back rest. I needed lots of help getting back on the seat.

I told my son it was time to start in as the wind was increasing, but he wanted to keep fishing. We started in anyway. By the time we were 8 miles from the dock the waves were breaking over the bow of my boat and everyone was soaking wet. :roll: My back was in terrible pain from hitting all the waves, and not having a back rest to lean on for support.

By the time I got to the dock, they had to put me in the seat of the truck while they loaded the boat and drove home. When I got home I immediately took my medicines and rested. I was whipped. :sad:

The boys jumped right in and cleaned out the boat and put everything away. Needless to say, it was my last trip on my boat. I had to try, just to see how my arms and hands would do, and whether or not I could handle the motion of the waves, etc. Now I know. Sixty years of fishing is over for this old salt. I knew the time was coming, it's just sad to admit there is one more thing I cannot do anymore.

God Bless
Capt AL (I guess I can drop the captain now) :sad:

[liz]

Capt. Al -

Sorry to hear that you're fishing trip didn't work out so well. Don't know why, but your story made me think of that Otis Redding song about sitting on the dock of the bay. It may be sorry seconds (compared to your fishing trips) but not such a bad way to pass the time. I think it's great the lengths your family will go to include you in their trips. Makes me think the adventures of Captain Al aren't over just yet. :)

Liz

[MtPockets]

Thanks Liz.

God Bless

[Al]

Well Capt. Al you'll just have to do what I do. Friday friends came over with about 5-6 pounds of Pickeral filets from their fly in fishing trip that week. Pickeral or Walleye is about the nicest tasting fish in Ontario waters. We all ate our fill. Then Sunday Lee asked what I wanted for Fathers day dinner. I said a lobster tail so my daughter set out to find a good size tail for me. She found some about 6 ounces so I had lobster and prime rib steak for supper. And some shrimp kebobs. No potato or salad just the good stuff for me. So even if you can't catch it yourself there are ways to enjoy it. The family was here even the niece and nephew and kids so it was a good day.
AL.

[MtPockets]

We had a good day over all, even with the fishing going bad. My wife cooked T-bone on the grill, boy was that good. Not sure what else we did as I was kind of groggy from the pain pills. Imagine, (Capt AL in the zone) Capt AL the pirate???
I had my own little world going on there for awhile. At least I slept good last night. Did not wake up until almost 9am this morning. WOW!.

God Bless
Capt AL

[Frizzel]

Are you kidding? You HAVE to stay the Captain! Just because a Captain can't sail like he use to doesn't mean he's still not the Captain!!!! My goodness by the sounds of your sons you've taught them the love for the catch AND how to do it. Your legacy will go on that's for SURE!

So, hold your head high Captain Al! You have a lot to be proud of. Yes, it's one more thing you can't do but your sons WILL do!

Blessings and peace in the midst of your storm.

Frizzel

[NvrGiveUp]

Thank you Beaner for the good report, I will let T know. Her doctor referred her to a pulmonologist today and also for speech/swallow therapy to go with her physical therapy. She was a little down, but I kept her focus on how the breathing machine was going to help her a lot (from what all of you say it sounds like a good thing and not something to be scared of). She will be seeing the pulmonologist tomorrow. Capt Al, I'm sorry about the rough fishing trip. I hope you don't give up on fishing though. Even if you only get to sit out in the water a little bit and "hold" on to the pole with some help, it still is a beautiful time. Especially at sunrise or sunset (people tell me that's the best time to go). T was upset that she wasn't able to operate the reel ... but she still had a fun time. I guess just enjoying the little things in life can be a huge source of joy. Keep on fishing! ;)
Pam

[brent]

helo it is a good thing for me to find this site i was told i have als may22 last year
am single and am having a hard time learning how to deal with every day stuff
i am glad that there is a place that i can get info & and maby give some
brent

[NvrGiveUp]

Hi Brent... I'm sorry that you have ALS. I'm new to this site too, my partner has ALS. The people here seem very nice and very helpful with answering questions. It also seems like a safe place to bear your soul and vent if you need to.
God Bless,
Pam

[eyeoftheestorm]

Just stopping by to say hi !!:-D I am a new member and have lost 3 very close members of my family to ALS . Am very much looking forward to making friends . Hope you will be one of them ! Take care & GOD bless , love , eyeoftheestorm :)

[Al]

Hello Eye. Welcome. Sorry for the loss of your family members. Jump in on any of the forums when you want.
AL.

[jimercat]

Hey Storm. Welcome. Sorry for your loss.

I'm sure you will be a welcome addition to this forum!

CJ

[eyeoftheestorm]

I would like to thank all of you for such a warm welcome . I really feel like i belong !!
Thanks Again !! eyeoftheestorm:wink:

[MtPockets]

Glad you found us Eye, looking forward to you joining in our discussions.
Hey Brett, I was DX on May 11, 2006. Just know you are not alone.
God Bless
Capt AL :-D

[NvrGiveUp]

Hi Al .... well thank God we went to see the pulmonologist because we found out that T is only using 40% of her lung capacity. She had the carbon dioxide check also which was 47 (they said that normal was 35 to 45). So she will be getting the bipap machine and also a nebulizer either tomorrow or the next day. It was scary to find out that when sleeping that her capacity further decreases. and during a dream that breathing is even harder for an ALS patient. I'm so glad we went. The pulmonologist has seen ALS patients before and was a little upset that her neurologist did not send her sooner. He said that as soon as you are diagnosed that you should have your lung capacity checked ... not because it may be abnormal already, but so that the pulmonologist will have a benchmark to compare to when breathing does seem to get more difficult. Well, T was a real trooper as usual and is looking forward to the new tools that she will have to make her life easier (we hope.) Thanks again to everyone for helping us feel more at ease with this prospect.
Pam

[NvrGiveUp]

:sad: OK, so I just scared the sh#T out of myself! I just saw an internet article that said most ALS patients with a lung capacity of less than 50% usually only have nine months to live. Is this really true? Are any others out there that can say they are around 40% and have done OK for longer? I'm so scared right now and I don't want to say anything to T.:confused:
Pam

[Al]

My pulmonologist told me that he has had patients live on Bipap 24/7 for up to 15 months before having to make the decision to vent or pass on. I'd tend to be careful what you believe in some of the articles around.
AL.

[NvrGiveUp]

Thanks Al, I appreciate you sharing that with me. I'm a little more calm today. Friends reminded me that each case is different. Also, again, live in today and stop trying to guess the future. That helps to have a happier day for sure. Thanks again. Have a nice day.
Pam :)

[Montana Carol]

Hi, All: I'm a 70-year-old resident of western Montana. I've been tentatively diagnosed with ALS after a year or so of progressively worse speech slurring, mild swallowing/choking incidents, and lately some weakness in my right thumb and lots of muscle cramping in jaw, rib cage, forearm, and legs. I've had an EMG which showed ALS, and I'm waiting for a call to set up an appointment for a second opinion/confirmation at the Virginia Mason ALS Clinic in Seattle. I enjoy playing the piano for school programs and church, as well as our local community playhouse; and so far, thankfully, I can still do those activities. My husband and I also do water aerobics M-W-F, and I'm having fun with my spring yard work and gardening. I'm so interested in these ALS/MND forums and have been searching the posts to see if I could find out what's going to happen with my disease, i.e. how it's going to progress, and have learned only that everybody's progress is different. Right? Have any of you had any experience with the ALS Assn-Evergreen Chapter in Kent, WA? They've been very nice and have put me on their newsletter mailing list already. Evidently they're the liaison/service center for all northwest PALS, including western Montana. Thanks for being here!:)

[MtPockets]

Glad you found the forum Carol. We look forward to hearing your questions and trying to help you through this.
Pam, on the Bi-pap issue some things to consider: different people have different results with the various types of masks that are available out there. There are masks just for the nose, some for nose and mouth, and even some that insert into the nostrils. You may want to check to be sure what they are ordering or giving you is what is beast to be used.
Just some more things to consider.
God Bless
Capt AL

[Al]

Hi Carol welcome. We have some members in Wa. so maybe they'll jump in if they've had any experiences there.
AL.

[Frizzel]

We live in Washington state just over the Portland Oregon Border. I have PLS that is moving into ALS confirmed by EMG. If you'd ever like to private e-mail me you're welcome to.

We've been in the middle of two bathroom remodels with lots of summer company and still trying to work, grow flowers, I still can play the piano ( I play from my spirit now). I actually go to Portland, Oregon for support. Look into the support you need and plan ahead. I am so glad I have. Reading posts and private e-mailing a few people on this forum has helped me considerably.

Pam, you are right about living in the moment. When you think about it, we're all terminal...some of us faster than others. I am looking at a Bipap machine for night time. Meeting with the respitory therapist next week. A good nights sleep is very important.

Captain Al also shared about 10 hours sleep helps with leg swelling. Something about Coke and Moonpies for lunch also seems to be helpful....Wonder if he was joking about that!? haha:-D If not, I'm sure enjoying them...:mrgreen:

Blessings and Joy! Frizzel

[hboyajian]

I am in the Seattle area, on Vashon Island out in the water between Seattle and Tacoma. Unfortunately I have no experience with the clinic at Virginia Mason, since my parents were living in the Olympia area when my dad was struggling with ALS. He went to a clinic associated with the MDA there. I had been considering getting Dad in at another clinic in Seattle to get another opinion about treatment options, but did not have a chance to investigate it before he passed away (3 months after diagnosis). I imagine that the V. M. clinic would be one of the bigger ones in the region with all the resources that go along with that, so it sounds like the place to go. It must be hard having to travel so far to get experienced, quality care. Goos luck. Holly

[MtPockets]

Ureka!
I have made a major break through in the treatment of ALS.
Moon Pies and a Barques Rootbeer drink. Only a Southern boy remedy though since you folks up north of MS probably never heard of a Barques Rootbeer. Guess you will have to use Coke or some other beverage of your choice. :-D:-D:-D:-D:-D:-D:-D

If may not help the ALS but sure does wonders for my taste buds. HUM!!!! Maybe that's why I weigh 265#.

Happy Weekend and
God Bless
Capt AL

[Montana Carol]

Thanks, Holly and Frizzel, fellow Northwest PALS, for your welcome. Even though I'm in Montana, we grew up in western Washington, and we have lots of family there. We'll be going for a family reunion in early August, and I've got an appt. with Dr. Ravits at Virginia Mason to confirm/revise my ALS diagnosis. I'm wondering if it'll turn out to be PBP or PLS, since my symptoms have been mostly in my speech/swallowing for over a year and only recently anything in my limbs (right thumb).

Anybody want to comment? Would that be a good thing compared to bulbar-onset ALS? I am experiencing weakness in my right thumb lately, though, and I think my EMG showed diffuse areas of involvement (my neurologist called it "pinching," knowing I hadn't yet heard of upper and lower motor neurons or other ALS lingo).

I'm wondering about the speech-banking equipment (software?) that I've been reading about. I'd sure love to get hold of that and record a whole bunch of stuff in my own voice before it's gone. I'm going to ask Dr. Ravits about maybe borrowing or inexpensive purchasing options -- anybody know about that?

I can't seem to write a short post -- sorry. I also want to know, with bulbar-onset, does one's breathing go before the arms and legs?

CaptAl and GrampAl, you two are a hoot, and so encouraging! Sounds like maybe you've been dealing with this disease for quite a long time, and still upbeat and positive. I'm inspired.

I'll save the rest for later.

[MtPockets]

Carol, I use a program called "Model Talker" and speech inventory tool? It gives you a list of phrases to record in your own voice or you can chose to use a built in voice to communicate with your computer thru a speaker.
There are quite a few phrases to record if you want to use your own voice, so I would start as soon as possible.
There are several more programs out there, but this is the first one I heard about and have been recording my voice with.

God bless
Capt AL

[cmesger]

Hello
I have been visiting this site for a couple of months all the information is great, and very helpful. My mother-in-law recd a diagnosis of Bulbar Palsy in April of 2004.

[Al]

Welcome aboard cmesger. Hope we can be of some help.
AL.

[towoflon]

Hello,
My name is Phil. Happy to have found this site full of wonderful and supportive people. A true blessing!!

[jimercat]

Hey cmesger and Phil. Welcome. Sorry you had to look us up, but you will find a wealth of info here and compassionate support.

CJ

[edna may]

Hey cmesger and Phil. Welcome. Sorry you had to look us up, but you will find a wealth of info here and compassionate support.

CJ

Welcome Phil To the the best of the best Forums. EM

[Frizzel]

Welcome aboard Phil!

Frizzel

[MtPockets]

Glad everyone found the forum. Jump right in if you have any questions. Make yourself right at home. We don't bite. :-D
God Bless
Capt AL

[joannie62]

Hi there,

I am here because my sister has been diagnosed with the Familial form of MND ( SOD1) I am negative I have a brother and I dont know re him as he has not been tested My sister is declin ing fast and this has been established that this familial form goes back 5 generations in our family.

I find this all very hard to take

Any help is welcomed.

Thanks

J J

[jimercat]

JJ,

I'm very sorry to hear that your sister has ALS and that it has been in your family so long!

Hopefully, you will be able to come to this forum for support and information. Please keep us informed regarding you and your family.

[Al]

Welcome JJ. Sorry you have to be here but hope we can help.
AL.

[captwilly]

I am very new to this, how does one say hi??

[jimercat]

You just did!

Why don't you introduce yourself? Are you one with ALS or a caregiver? Whichever it is you will find support here.

And so sorry you had to try to find us.

[liz]

Welcome, Captwilly. Sorry to hear about the dx. You've come to the right place. I suggest browsing old threads to get an idea of how it all works and don't be afraid to ask questions.

Liz

[captwilly]

Since I am so new, let me tell you a bit about myself.. I am 67 yrs young and live just north of Dallas in a rural town. My caregiver has been my loving wife for 44 yrs (dont ask how she put up with me for that long, I dont know). I am a retired pilot and full of questions about the days to come.
Everybody I have come into contact with has been so very supportive, I am really impressed. I currently need data re; motorized chairs, can anyone shed some light on this?? thanx for the warm welcome and I hope that I may be able to contribute in my own small way....wm

[Al]

Welcome Capt. Willy. Here is a site dedicated to wheelchairs that has a lot of information. I use an Invacare TDX 5 myself and it's pretty good.AL.
http://www.wheelchairjunkie.com/cgi-bin/ultimatebb.cgi?ubb=forum;f=3

[Frizzel]

http://www.ucsf.edu/brain/pdf/ALSManual.pdf

You may not be able to link directly, just copy and paste it to your browser.

Welcome welcome...

As Al shared with me, Check with insurance to be sure you don't get a wheel chair with insurance now that they won't pay for another one within five years. My insurance will only pay for one every 5 years so we've bought my manual which I am no longer using and my heavy duty 4 wheel scooter at a garage sale. Down the road I may need one that I don't have to use my hands to hold down the power. I am right handed and still have strength in my right hand.

All the best!

Frizzel

[IHateThisDisease]

Thanks for this site. I am new to everything. The site, the disease (my mother was just diagnosed) and new to feeling helpless. I am hoping to gain friendships, knowledge, and support for my family and most of all my mom.

[hkohlman]

Hi all of you who r new. This disease is hard to deal with and I have found that this site is the best support besides family of course. Please remember that you are not a super hero by no means and to accept the help that this site and others can give you . It has taken me a while to learn this.

I am a caregiver for my dad of 65 yrs. Who has ALS. It is progressing really fast so I know how it feels to have the shock of this icky ugly diesease.

[Frizzel]

Sorry to hear about both your mom and your dad. Both of you are taking great care of your folks. Be sure to take time to play and go on with parts of your lives outside of this disease. My husband set up a one day fishing exp with 4 friends. I usually go with him but I can no longer do that. So, I'll wait for him to come back and tell me all about it living vicariously through his strength. I'm most happy when I know he's living life outside of making sure I'm ok.
My husband and I are setting up a support network of people around us who collectively will be of help now and down the road. I'm usually the giver,,,,I am having to teach others what I like, what I dont like now because down the road I won't be able to.
May I suggest to ask your mom to be honest with what she needs helps with and what she still wants to struggle doing herself.
We have a site 'Women diagnosed with MND' . We talk about girl stuff and Private Message each other with things we don't want to talk openly about.
My name is Frizzel. I have Primary Lateral Sclerosis that is moving into ALS. I have been very active my whole life. As the lights are going out in my body, I am who I've always been on the inside.
Is this disease hard to deal with? It's a mountain range and I'm crawling my way over with the help of God, my family, friends and a team of specialists.
I would like to meet your mom and so would the others. We women need to stick together. All the best to all of you.

Appreciate your honesty that 'none of us are super heros' addressing caregivers. Although CAREGI VERS ARE super heros in my mind, even SUPERMAN had to be Clark Kent once in a while.

Thank you to all the Caregivers who support your loved ones!!!!!

Frizzel

[rain]

Hi everyone.

I'm new here.

My brother diagnosed with ALS .
I want to do something like my brother.

So thank you again and I'll see you around here.


You can not advertise here. You will be banned if you do it again. AL.

[Lou]

Hi,
I'm new. I'm Lou. My husband has Als . He has been ill for 5 years[4 since diagnosis] We have three grown children.
I live in a big three storey house in the country where we have renovated a sunroom for my hushand. It is a lovely setting but I am isolated and becoming too tired to take care of things. He cannot move anything but his shoulders and toe. No bulbar or speech problems. He is on a bipap when he lies down. I don't know what to expect in terms of progression of the illness. He won't talk about his illness.

Our children cannot help much and I do not have many social contacts such as a church group to help me. I want to keep him home but I am quickly burning out. I have lots of great help from the Access Center but when they are not here it is hard alone.

I am feeling grouchy and irritating my children which increases my isolation. I feel like such a not nice person.I'm irritating my husband who just wants to have positive things around him- understandably. He will not consider going into a home even for respite for me.
Anyone else ever been here, done that?
Even writing this makes me feel guilty. Crab, crab crab. Help me be more positive. Thanks Lou.

[Al]

Hi Lou. Welcome. You are not a bad person. Caregiver stress and burnout are one of the biggest problems faced by Caregivers and loved ones. Is there any chance CCAC can give you some respite so you can go to a movie or get your hair done? Do something for you once in a while. You're husband might not be too keen on the idea at first but explain that if you get sick, off he goes to the home any way so you need to start looking after yourself too.
AL.

[Barbie4]

Hi Lou:

I say, be a crab!!!! It isn't easy doing what you are doing and you shouldn't be so hard on yourself. This forum is a great place to get it off your chest. You have every right to feel the way you do, and I just wish that you had more relief from friends and relatives. I am sure, like everyone, you have some good moments and some bad. I hope you can reach out to someone local and ask for help. You need time to regenerate too.

Barb:)