New? Introduce Yourself - Say Hello

[MtPockets]

Welcome to the forum. I'm sorry you had to come here, but hope you will feel right at home and consider us a part of your extended family. We are all in this together, you are not alone.
There are always people who are concerned about how fast they can expect ALS to spread to other parts of the body. It is sad to say no one knows as there are so many variations of this disease and many different speeds of progression.

As for me I went from having spasms in my legs in May of 2006, to now having no movement in my legs and feet as of January of 2008. About 18 months. How fast will I lose the rest , Only God knows.

My way of dealing with all this: hope, pray, and trust God.

[fiddleplayer51]

Welcome ML. I'm so sorry about the rough road you're travelling. We're all on this road together each in very individual ways. There's no adequate way to predict what's next for your husband. My husband's ALS is bulbar onset, and according to some of the literature, there is a predictable progression of bulbar ALS through four muscle groups:

"Bulbar ALS tends to progress predictably through four muscle groups. First, the tongue and lips are affected. Second, muscles of the palate, mastication, pharyngeal constrictors and buccinators. Third, the upper facial muscles, sternocleidomastoid and vocal cords. Fourth, the extraocular muscles are affected. Deterioration of the respiratory muscles can occur at anytime and at any rate during the course of the disease.

Physical findings seen early on in ALS (first muscle group) include dysarthria, tongue fasciculations, saliva drooling from the mouth, and inability to whistle.

Dysfunction of the second muscle group results in palatal and masticatory dysfunction. There is reduced palatal elevation when the gag reflex is stimulated. Early findings of weakness of the masticatory muscles are subtle, but in more advanced disease muscles antagonistic to the muscles of mastication pull the jaw downward, resulting in the mouth remaining open and leading to drooling and drying of the lips, oral cavity and oral secretions.

Deterioration of upper facial nerve branches follows involvement of the lower face (third muscle group). The sternocleidomastoid and trapezius are variably affected, but when they are, there may be difficulty in holding the head upright and in shrugging the shoulders. Vocal fold dysfunction probably affects both adduction and abduction, but the effect on abduction is more noticeable. Phonation is usually preserved, even in advanced disease; however, absence of stridor is probably more related to weakness of the respiratory muscles than to the narrowed glottis.
Extraocular muscles (group four) are infrequently involved, and when they are, the disease is far-advanced and the patient usually ventilator-dependent.

Dysphagia symptoms range from essentially normal eating habits to complete inability to swallow. Solid food dysphagia occurs first, closely followed by aspiration of thin liquids. Tucking the chin down toward the chest while swallowing tends to shelter the laryngeal inlet under the tongue base, thereby reducing the likelihood of aspiration. At some point, eating becomes such a chore because of aspiration, food spillage and prolonged mealtimes, that tube feeding should be considered. While a variety of options are available, a percutaneous gastrostomy (or jejunostomy, for patients with reflux) performed under local anesthesia and sedation is preferable in most cases."

If you want to read from the source of this cut-and-pasted info, here's the link:

http://www.voiceandswallowing.com/swaldisorders_Neurologic.htm

The title at the top of the page is "Neurologic Swallowing Disorders". Scroll down the page to E) Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig's Disease) to see where I cut and pasted from.

It says that bulbar ALS usually follows a recognizable, progressive course. Whether this means that it follows a recognizable, progressive course only if it's bulbar onset, or whether it also follows a recognizable, progressive course once it reaches the bulbar area when it is limb onset is not clear.
I hope you can gain some clarity from the specialists at the UIC ALS Clinic.
Take care and all the best to you and your husband/family. Write when you need to and gain comfort from realizing that you're not alone in this horrific struggle. We're all here to help each other as we live day by day with our PALS or with our own ALS.
Jane

[Lorie]

Sorry that anyone has to be here. But you couldn't have found a better group of people that know what you and your family are going through.


Lorie

[rbbums]

Hi, I was dx with ALS on 3/23/08. It started in my Toung. I am having weakness in my left arm. I am not getting submerged into the doom and gloom not right yet. I just got married last year and we had a son in jan so to get all caught up into the depression of the desease would be a bad idea for my family. I have 2 children from a previous marriage, 21 and 18. They took it hard at first but are doing better now that I am not depressed about it. I stopped working the beginning of April and I am going to take care of my son. I have been playing drums for more than 30 years and I am proud to say that I and an old buddy have formed a new project with my son. We already recorded 3 songs and we will be recording more. I was a little disapointed that my skills on the drums have dimminished but I can still trhow down a mad beat!
I have been taking Rilutex for 2 weeks now and I have not had any side effects from it.

I am going to see a doctor at UCLA to get a second Dx. I am hoping that i do not have this desease but if I do I have already accepted it.

I hope to give you all nothing but positive news about me in the months to come. I keep telling myself and I believe this, I am going to last at least 5 years. I just believe this.

I am not a quiter and I am not going to let this cause me to change

Thanks for reading

Monkey

[sironside]

My name is Siana and I'm 22 years old. I've recently had very disturbing symptoms (too many to list here) and am yet awaiting a diagnosis. Let's just say they are mainly neuromuscular. I really appreciate reading some of your posts. I cry every day and somehow I am comforted to read some of the posts on here. Thanks everyone for your encouragement and support. I plan on sticking around and educating others about ALS even if it turns out I don't have it.

[Determined]

Hi everyone,

I am pleased to have found this forum, I am sure it will prove to be of great value. I live in Australia am into my third year of MND, almost no movement from neck down, but breathing and swallowing still 100%. Poor speech, use a head mouse for the computer and etriloquist voice programme to communicate.

Cheers,
Determined.:-D

[Al]

Welcome determined. Hope we can be of service or just new friends.
AL.

[silvermane]

Hi all,

Brand new to this site. Diagnosed with MND last week and I have to say my life has been turned upside down. I am a 52 year old male living in Melbourne, Australia. I am married and have two great sons, 20yrs and 17yrs both living at home.

I have been having arm/hand cramps for a couple of years and following a visit to a neurologist last October, fasciculations were observed in my upper left shoulder. These have now progressed to both arms and my tongue. I have apparent weakness in my left arm and right leg, although my leg doesn't really feel weak. My neuro has said that I may lose the ability to speak and swallow in 3-6 months and this has scared the living daylights out of me.

It may well be far too late, however I am now changing my diet to healthy foods and filtered water and willing to try alternative regimes. Any suggestions welcome.

Anyway that is me at this stage, and I look forward to chatting with members of this forum.

[Determined]

Hi SILVERMANE,
I am a fellow Australian living in Coffs Harbour but lived in Mooroolbark & Lilydale for 20 yrs. I had my first obvious symptoms in Oct '05, officialy diagnosed in July '06 and told much the same as you. My condition now is virtualy no use of hands arms or legs and poor speech. a couple of months ago my breathing & swallowing began to deteriorate badly, now it is 100% back to normal thanks to Low Dose Naltrexone, 4.5 mg at night. There is a web site & forum but don't know if i am allowed to post on this site? it has also improved my muscle tone somewhat . Will be happy to give my email if you want more info.
Keep your spirits up,
Determined (not to give up!):-D

[mztialady]

Hi. My name is Tia and I am the wife and caregiver. I think this site is awesome. It's nice to hear that others are going thru the same things we are. I look forward to sharing.:-D:-D

[silvermane]

Hi SILVERMANE,
... now it is 100% back to normal thanks to Low Dose Naltrexone, 4.5 mg at night. There is a web site & forum but don't know if i am allowed to post on this site? it has also improved my muscle tone somewhat . Will be happy to give my email if you want more info.
Keep your spirits up,
Determined (not to give up!):-D

Love to know the website Determined. Could you send it to me at geoff@keytosuccess.com.au

[DeeMichelle]

Dee,
I think the best advice I could give you is to be sure you go to a Doctor who specializes in treating ALS patients. I do not know if you have an ALS clinic where you are, but this is the most important thing to do, I believe. Any other Neurologist probably can made the Diagnosis for you, but I would much rather have someone who deals with the disease every day and has more experience.
Since you have the history of familial MND in your family, it would be easy for a Doctor to jump to the conclusion that is what He has without exploring any other options. Indeed, it may turn out to be ALS. I hope and pray that is not the case.

Thanks for this message. My Dad does have ALS. The support we've received is really good and Neuro consultant very likeable. There's kind of good news for us too tho' this is familial we seem to get late onset ALS. So far everyone seems to have had it in their 70s. At least 4 siblings, but maybe 5 and maybe my Grandfather. We have been told that our DNA may provide something useful in terms of delaying the onset of ALS. We're all sticking together and whilst it's not a path we'd choose of cause, it's a relief to know.

Cheers
D

[DeeMichelle]

Hi Dee, and welcome to the forum.

Whats on that menu? Sounds delicious :)

Best wishes

Steve

Hi Steve mostly soft very English food, but she cooks really well so it's tasty and he's eating better than has done for a while: mince beef dishes; very soft roasts with tender pork or chicken; thick soups; bubble and squeak; corn beef hash- my mum remembered that before my paternal grandfather died all he would eat was corn beef hash and my dad carried him to the bathroom we feel sure he had ALS.

Cheers for reply Steve.
Best
D

[Farmgal from ND]

Im new here and am having a little trouble understanding all the rules. I hope I can ask you for help. How do you know if someone has answered your question and how can you read there messages ?

[Al]

Hi Farmgal. If you go to the new members page there are sticky's at the top of the page that give instructions. Also at the top of this page is FAQ which is frequently asked questions. They should help.

[MtPockets]

Welcome to all the new members. Feel free to jump right into any discussion with your questions or comments. This is a great bunch of people here for you and anyone who needs help.

[lerg62]

Hello: My brother (age 47) was diagnosed Jan 07 with ALS. I have been on the fringes for a while after discovering this wonderful site. He has lost the use of both arms, his legs are starting to get very week also. His wife has started looking into getting him a wheelchair and they also need to get some kind of van to transport him when the time comes that he can't walk. I was wondering if anyone knows of insurance paying for setting a van up for handicap use? the insurance company is not very forthcoming with info. He still gets up and goes to work everyday, it is such a struggle for him but it is what keeps him going (he is a supervisor paving roads) His boss has been wonderful, he picks him up every morning, he has wonderful friends and he is dealing the best he can. He has even gone on a hot air balloon ride and gone skydiving in the last month. Says he is making memories for his daughter (she is eight years old). I live in NY he is in Florida and I go see him when I can and we are flying him up here over the summer for a visit but it is very difficult being so very far away. His wife asked me about the van and insurance and I told her I am always reading this site and the people are awesome and I would put the question out there.

Thank you and God bless all of you.
LL

[Al]

Hi LL. Welcome to the site but sorry about your brother. You should post your question up in the General Discussion area. It gets more responses up there.
AL.

[lerg62]

Thank you Al. I am learning my way around the site and wasn't sure where to post.

[MtPockets]

Just something to help everyone with their posts. If you do not have a spell checker program, you can go to http://www.iespell.com/ and download the progran and add this to your Internet Explorer.

After you have typed anything on a IE page such as this forum, go to your tools option on the menu bar and click IE Spell and it will check your document for you.

I have used this for about 6 months and it saves a lot of time since my fingers have a mind of their own.

I hope you can find this helpful.

[JPROSE]

Hey, thanks! I'm downloading it now. Hope it works!

[MtPockets]

:oops: I just found out there is already a spell checker built into this site. Just click the ABC check-mark at the top of the smilies.

[c1adelman]

Hello Everyone,

I have been on this site many times and decided to finally take the time to say hello and introduce myself. My Dad was diagnosed with ALS Fall of 2006... I can't believe where this road has taken us... Dad's symptoms started in his Bulbar region. In January of this year, he had the feeding tube placed. He can no longer eat or swallow anything. He has lost almost 100 pounds during this whole ordeal. He can still walk and type on his voice synthsizer - which we are very thankful for. But he's getting weaker... The future looks dim and frightening!

Anyway, my kids and I have built a house right next door to him and I am blessed to be able to spend every day with Dad as I am still a stay-at-home Mom with my 3 year old daughter.

But it's also very difficult to watch my Dad's body deteriorate...

So - that's about it for now.... I'm getting too emotional...

I'll keep reading and writing occasionally...

Cheryl

[MtPockets]

Glad to have you with us Cheryl. Your dad is blessed to have such a caring daughter as you. I'm glad you can spend some quality time with him. I know he must appreciate it greatly.

Please keep us informed as to how both of you are doing.

[flwife]

My husband has been suffering for 6 years with what seems to be an atypical ALS. He started with L hand atrophy which was his only symptom, other than fasiculations of his limbs for four years. October 2006 he ran the Chicago Marathon. End of 2006 his R hand started to go. His neurologist, who is a muscle disease specialist, kept telling us it was not ALS because of it's presentation and progress. He thought it was a form of multifocal motor neuropathy/CIDP and began treating him with IVIG. February of 2007 we went to Mayo in JAX. The neuro there looked at him for 15 minutes and said, "this is ALS" but "you'll be around awhile" and then sent us home. My husband was devastated. His regular neuro sat us down and told us why he disagreed. November 2007 he complained about back pain which he treated with regular doses of Aleve but his walking became labored due to the pain. Since February 2008 his speech is sometimes difficult to understand and he has hoarseness (which has been explained away as GERD from all the Aleve). He is easily fatigued (even though he still works full time and travels as part of his job) The neuro thinks he might have myasthenia gravis on top of whatever else he has going on so is now treating that. I am emotionally a wreck, I feel that we might be dancing the denial dance. I repect my husbands need to hang on to hope that this is not ALS but the fast progression of his symptoms in the past 6 months are scaring me. He won't go to an ALS support group because in his mind, he doesn't have ALS. Anyway, sorry to go on and on, but I read this website and do find some comfort in the posts. Thank you.

[Al]

Hi flwife. Sorry you havee to be here looking for advice but welcome. I wouldn't even venture a guess as to what your husband has but being still mobile after 6 years is a good sign. Feel free to vent or ask questions. We answer to both here.
AL.

[fiddleplayer51]

Hello Cheryl,
I'm sorry for what you are going through. It's got to be the hardest thing to watch our loved one suffering and declining. My husband's onset also is bulbar with speech and swallowing difficulties that continue to worsen almost weekly. Walking is now becoming a problem and right hand weakness.
I hope you have someone close by you can turn to just to talk things out and to assist you in caring for your Dad. He is so very lucky to have you right there, but you also need to be taken care of every now and then. Please keep posting and letting us know how you are doing. Ask any questions and make any comments necessary to give you peace of mind.
You're very much in my thoughts, Cheryl.
All the best,
Jane

[fiddleplayer51]

flwife,
Your situation sounds very difficult and frustrating. You're so good to respect your husband's need to hang onto hope, but I'm sure it's taking a tremendous toll on you. I really feel for you. The fact that he is easily fatigued must be very frustrating for him and could possibly make him fight harder against it which in turn can increase the fatigue even more. It's so sad. If his speech is becoming affected, his swallowing may also start to become affected and that is very frightening for both of you.
I hope your husband can soon acknowledge his symptoms so he can take whatever steps are necessary in his care, and so that you can feel the relief of knowing that what needs to be done is being done.
I wish you all the best in your ordeal,
Jane

[flwife]

Thank you, Jane. I am really struggling. And thanks for Al's kind words as well.

[jimmig]

Welcome to all the new members. Feel free to jump right into any discussion with your questions or comments. This is a great bunch of people here for you and anyone who needs help.

Hey to all with this brutal news. 2 weeks now. I still can't stop the uncontrolled crying.
I have 2 children. A two year, and nine year old. All I want is to see them grow up.
After the als diagnosis, It's hard to image it.
I'm a 42 year old carpenter. 3 years ago i fell from some scaffolding. landed on left side and shoulder. 2-3 months later I noticed twitching in my right arm. One year further,
i started losing the use of my right hand. Ignorant and stubborn. I dicided not to seek medical attention. Always thinking it would pass. It didn't. Now scared i damaged
my neck. A doctors appointment was necessary. 3 mri's. 2 neuro-conductive tests
and 1 crappy diagnosis. Prior to my first visit to the doc. I enter the internet for some
unqualified self diagnosis. Always thinking pinched nerve, or related issue was the case.
Nope. Sorry jimmig You Have als.
My poor wife. Our combined tears could fill three bath tubs. I've spent 42 years with a blue suite, red cape, and a big "s" on my chest. Only to find my self surrounded with kryptonite. I'm not able to save myself from this sad story, let alone remove the grief
from the ones that mean the most to me.
I've tried to continue to work. All the while cutting, hammering with my left hand.
from this experience, I have come to understand. You can adapt to adversity if you really have to. I am very passionate about the work I do. Very few occupations in life can give you instant gratification. Mine is one.
I now am not able to work. But my struggle goes on. I refuse to let a handful of doctors
decide for me. I'm going kicking and screaming, just like I cam in.

[checkmat2]

My husband is 45 years old, painting contractor and in Feb. my husband had neck surgery due to a fall several years ago and now in May is has developed ALS.....
He is on a breathing machine 24/7 and a bipap machine at night. He has lost alot of weight and he is scared to go outside. He just wants to sit in the house day after day.

I am in the process of selling my house and I am trying down size my finances and I am also trying to buy another house for a one story instead of two story house. But there is a bedroom down stairs and full bath for him to use for now. I have also traded his corvette and my car into getting one car.

I kept his work truck hoping he might want to go back to work, he is self employed contractor. Running his business the best he can do out of our house. I also trying to sell my motorhome. To cut more cost.

I am so mentally and physically tired. I work full time and during the day I do very well. At night I cry alot. I am very distance from him, it hurts to be near him. I am so sad.

Thank you for letting me vent.
Christina

[MtPockets]

Christina, welcome to the forum. Welcome also to the other new members. Please know that you are among friends here and with people who are going through or have gone through the same emotions and physical problems you now face. We can identify with your concerns, pain, worry, fears, etc. You have found a wonderful caring group of people here, Many of us locked inside a body that no longer functions the way many people take things for granted.

I can identify with the superman cape thoughts. I always felt I could do anything at anytime. Glad to see you found us jimmig and all the others.

I wish there were a hug icon on here so I could give each of you a big welcome to the family hug. See I'm from Southern Mississippi, and down here we greet one another with a hug most of the time. It's harder when you are in a wheelchair and are losing your motor skills, but we do the best we can.

Since I cannot give you a hug personally, here is one from my best friend.

[jimmig]

hi kids, i say this because we are to young for this disasterous deseise.
I was in bed this morning, and looking at my 2 year olds face. It must have been and hour and half. Tears rolling down my face. Finally able to stop and look at the clock.
I turn back to stare at tolan again, his eyes now open. He looked at me and said, i love
you daddy. isant it a beautiful day? as he gazed out the bedroom window. My sorry
now replaced with the emotion parents commanly couple with their children.
It drives my legs out of that bed. We can all fall prey to the pain or inabily to mentally
go on. We are not alone. We need each other. We are fighting the same fight.
May your god go with you. The days are all beautiful.
I love this place!!! thank you for letting me rant.

bless you all....jimmig

[checkmat2]

This disease, not only is it sad to see my husband helpless. But I can't understand why I am sooo mad. Usually Memorial weekend he going get in our RV and hook up our boat and take off for four days. I just want to run and run and not look back......it's so hard to accept. We were such a busy actived family and not everythings come to a hault.

Christina

[nurburch]

Christina,
I am so sorry to hear about your husband. This diease is terrible for all. Our family has been turned
upside down too. My husband 40 was dx in nov 06 and is now in his wheelchair most of the time. He is
on his bipap at night and can't move much, but I still take him on vactions and kids games ect. You can't
let ALS stop your living. Cherish each day even though they are tough. We have 3 kids 9,13,15. I try to
keep things as normal as can be. Now that I will be praying for you and yours. May god bless you all.

Sheryl wife of Scottie.

[MtPockets]

Christina I think I can understand how you feel in some ways. I just sold my boat that me and my 4 children and 15 grandchildren went fishing on together so many times. Yet it got to the point I can no longer get in and out of the boat due to loss of the use of my legs and weaking of my arms. The boat just sat there in the driveway for over a year reminding me every time I saw it of the fun times we had together.
I do thank God that I took the time when I was able to go fishing with them as much as I did for I have such great memories. Memories of them catching their first fish, and so many others.

Please people while you are still able, each and every day, go make some good memories you can cherish later on in life. Do not just sit there feeling sad and sorry for your self. Live each and every day as if it were your last. Enjoy Life. Take pictures. Here is one of my grandson Nathan and you can see many more on myspace page at: http://www.myspace.com/als_bigal

[checkmat2]

Your family is beautiful.....you remind me of my DAD......he is a cancer surivor..he's doing good, but still needs to lose weight. He lives in Nebraska.

Al. Nights are hardest for me, when everone goes to sleep, that's why I write, to help with my tears.......I guess the pain comes out, because in the morning, I put my game face on and fake it till I make it. Please stay in touch, I saved your myspace.......I wanted to share it with my boys who are 22, 14, 12.


Christina

[checkmat2]

thank you sharing,,,this sooo tuff. I hate it!

christina

[nbjess]

I signed up to this group in 2006 when my good friend Leah Whipple had ALS and now God has taken her home in February 2007. Since then my Brother Frank was diagnoissed with this disease. It started in 2003 with weekness in his hands and was slow to move until summer 2007. Now the disease is rapidly taking over. His voice is down to a whisper, he is still getting around the house with and without a walker. I want to update and renew my log in so I can read more on this subject.

[Al]

Hi nbiess. Sorry about your brother. Very unusual to have a friend with ALS and a family member now. Feel free to use the search feature above or just ask what you need.
AL.

[checkmat2]

How do you deal with the person who has als and them being so demanding, get me this, do this......HELP

Christina

[jpruppe]

Hello I'm new, here is my story:
Male 65 years. In March 2008 I received a preliminary diagnosis based on an EMG and an NCV test. Adding insult to injury, on the afternoon of that day, after being stuck with needles and shocked during the morning, my supervisor fired me in a company-wide “Force Reduction.” Thus I am now retired, though a few years earlier than planned.
My brother suggested that the gods were chuckling on that afternoon over the Fate they were preparing for me and my wife. But what was the “hubris” of which I have been guilty? Assuming that I could stay well for many years, banking on my vegetarian diet and exercise program to maintain a high level of wellness? That I would decline rapidly and painlessly to a quick end? Not to be.
In April wife and I went for a second opinion at the Univ. of Virginia Medical School from the Neurological Clinical Services team of doctors and technicians, who repeated the needles and shocks of the EMG and NCV tests. ALS was confirmed.
I was referred to the many therapeutic and supportive services at the ALS Clinic in Charlottesville, the only ALSA Certified Clinic in Virginia. My first evaluation was in mid-May. We will go ahead with a PEG tube and a BiPAP. I have chosen not to go on Rilutek, since the minimal benefit does not seem to outweigh the cost and possible side-effects. We will also be looking at canes, foot and ankle orthotics, and wheelchairs.
There were many warning symptoms since early December 2007 and even earlier: nasal voice, muscle stiffness, cramping, twitching, fatigue. My speech is clumsy, and I am at risk for choking. As of May, 2008, I am also experiencing some weakening of the right leg muscles. I have started walking with a cane. I am continuing two half-hour walks around the park daily, 15 minutes of stretches 3-4 times during the day, and over an hour of yoga stretching (and push-ups and sit-ups) during the evening. I have done similar walking and stretching all my adult life and will continue as long as I can, though I am feeling some progressive weakness and fatigue and will no doubt be forced to taper off.
My wife is a nurse and wonderfully helpful and supportive. I have sent out about 30 statements similar to this one to friends and former colleagues. Many have responded with kind words of sympathy. We learn that the body and the mind are very vulnerable. You also learn that everybody has their problems, many worse…a good friend of mine from college wrote that he has Alzheimer’s Disease.

So if you are young and healthy, my advice is: stay that way.

[Al]

Good advice but hard to follow sometimes. Welcome anyway.
AL.

[psycomom]

Hi . So glad i finally found a place To ask for advice. My name is Wendy.

[psycomom]

My mother -in -law was just diagnosed with ALS in January. Unfortunatly it is too late to do any thing. . She is in a wheel chair. She is compleatly dependant. We set her up with hospice to come here to the house. I will not put her in a home. This is her home till she goes to live with her maker. It has progressed so fast. She refuses a feeding tube. She will only eat about an ounce or two of food at a time. She cant be understood when she speaks. I have been trying to find anything on the web to help her comunicate. Right now we have a piece of paper with the alphabet printed on it and she spells things out but i need one that has words on it . Anyone know where i can go to print one out?

[checkmat2]

for the advice and story......

Christina


Hello I'm new, here is my story:
Male 65 years. In March 2008 I received a preliminary diagnosis based on an EMG and an NCV test. Adding insult to injury, on the afternoon of that day, after being stuck with needles and shocked during the morning, my supervisor fired me in a company-wide “Force Reduction.” Thus I am now retired, though a few years earlier than planned.
My brother suggested that the gods were chuckling on that afternoon over the Fate they were preparing for me and my wife. But what was the “hubris” of which I have been guilty? Assuming that I could stay well for many years, banking on my vegetarian diet and exercise program to maintain a high level of wellness? That I would decline rapidly and painlessly to a quick end? Not to be.
In April wife and I went for a second opinion at the Univ. of Virginia Medical School from the Neurological Clinical Services team of doctors and technicians, who repeated the needles and shocks of the EMG and NCV tests. ALS was confirmed.
I was referred to the many therapeutic and supportive services at the ALS Clinic in Charlottesville, the only ALSA Certified Clinic in Virginia. My first evaluation was in mid-May. We will go ahead with a PEG tube and a BiPAP. I have chosen not to go on Rilutek, since the minimal benefit does not seem to outweigh the cost and possible side-effects. We will also be looking at canes, foot and ankle orthotics, and wheelchairs.
There were many warning symptoms since early December 2007 and even earlier: nasal voice, muscle stiffness, cramping, twitching, fatigue. My speech is clumsy, and I am at risk for choking. As of May, 2008, I am also experiencing some weakening of the right leg muscles. I have started walking with a cane. I am continuing two half-hour walks around the park daily, 15 minutes of stretches 3-4 times during the day, and over an hour of yoga stretching (and push-ups and sit-ups) during the evening. I have done similar walking and stretching all my adult life and will continue as long as I can, though I am feeling some progressive weakness and fatigue and will no doubt be forced to taper off.
My wife is a nurse and wonderfully helpful and supportive. I have sent out about 30 statements similar to this one to friends and former colleagues. Many have responded with kind words of sympathy. We learn that the body and the mind are very vulnerable. You also learn that everybody has their problems, many worse…a good friend of mine from college wrote that he has Alzheimer’s Disease.

So if you are young and healthy, my advice is: stay that way.

[MtPockets]

Hi Wendy,
Welcome to the forum. I'm sure soneone will come along with some good ideas for the alphabet board for you.

You might want to try the search icon above while you wait to see if this subject has been brought up before. Glad you found us and welcome to the family, but I'm sorry for the reason you have to be here.

[Darlav]

Thank you all for sharing your information. I am interested in peoples stories about their early symptoms. I hope I'm just over reacting, but I'm fearful. You all seem so brave.
D

[baba]

Hi,
I've been using this site for information some time now. Thank you. This is my first time posting, of course I need help.... husband has bi pap full time, in a power wheelchair. He has a synchrony II. We have been supplied with a battery for outside use which weighs 50 lbs, surely there is somethings smaller and lighter????

[sdsyd]

I posted a couple of times already. But am so thankful for this site. I have not been diagnosed with ALS, and hope I never am, but as with as neurology goes, I am learning a lot about the wait and see game. This is a wonderful place to share fears and feelings. I am a COTA/L (Associates in Occupational Therapy) and have treated people with many different Dx. If anyone has any questions I would be more than happy to help you find ways to make your lives a little easier through adaptive equipment and ways to compensate for losses by using different muscles and energy conservation teachniques.

Cindy

[Al]

Hi baba. Have you got a Canadian Tire? They have battery packs that are lighter.
AL.

[Mand406]

Hi,I just have a question for you..I was reading your posts and you seem to be very educated on ALS.Here's my story,lol...Ok,I have had twitching in hands and feet for about three years,also with VERY strong reflexes,and a strange sensation up my left leg for about a month,not really weakness but sort of.It was really no concern to me even though the twitching in my feet have became constant.What REALLY scares me is about 2 weeks ago,I woke up to my tongue twitching,I thought it was a pinched nerve but it hs yet to go way,I looked up my symptoms and only ALS sights came up.Also,I learned that I have a scalloped tongue while looking in the mirrior,and I can feel all the twitching very well,its like almost a constant pull and realease type thing.Also.the night before I had the twitching my speech was kind of thick,and I have bit my tongue a couple of times.I had NEVER heard of ALS until looking up my symptoms,now my left hand is doing it almost non stop as of today!!!My doc took some blood and seems to think it could be a vitamin def. or something,but arent these EXACT symptoms??Please help...BTW,my name is Mandy:) I will turn 28 in a ouple of weeks,I realize that you cant tell me for sure,but just looking for some info,and a friend..Thanks!!

[baba]

Morning,
Thanks Al! We do have a Canadian Tire near by.
Thank You

[Want2Help]

Hello, and thank you to everyone who makes this wonderful site possible. I am here because a dear friend of my family has been diagnosed with ALS. She was actually diagnosed with it about 2 years ago, but I am getting to the point where I feel the need for some support about it. I am realizing that the more supported I am, both emotionally and with information, the more I can support her.

Again, thank you for this wonderful place where I can hopefully learn a lot to help my friend.

Lisa

[Al]

Hi Mandy. Not sure if you meant me but here goes. 27 is an unusally young age for ALS. I'm assuming you've heard of BFS. The only thing you can do is go through the routine tests. If you do get to the point where they suggest a Neurologist, make sure you get one experienced in MND's or better yet an ALS Clinic. Stress makes twitches worse so try to relax.
AL.

[Mand406]

Could anyone explain to me the twitch in the tongue with ALS?Mine is like a pull and release,and it has been there for over two weeks,and I also have not really weakness but akwardness in my left foot,and leg..and a little numbness has set in.Also,what does atrophy look like in the feet?Thanks so much for all you guys help!!

[Phyllis7777]

Hi my name is Phyllis and I live in Sarasota, Florida. I've had gradual loss of speech for almost a year now (began one month after I got married!) and have been to eight different doctors so far trying to figure out what's wrong and how I can fix it. Yesterday I got the report from the neurologist that says "bulbar palsy" and today went to a very sweet speech therapist who (when I pressed her for an honest answer) doesn't think I can regain the ability to speak again. I've spent the last year pouring over the internet, so I think I know what happens next...

I'm not looking for sympathy, I just want to communicate with others who have been down this road too. I feel so cut off from all my friends and family, even though they are trying to be so loving and supportive, but they don't understand how losing the ability to speak is like losing so much of who you are. I can already see that this site is an incredible support system and I'd like to hear from others who have learned how to cope when your mind is still still sharp but your voice is gone. Amazing how we take so many of the miracles of the human body for granted until they stop functioning. Please connect with me if you have any advice or suggestions on what to do now. Thanks!!

[Al]

Hi Phyllis. Sorry about your diagnosis. You should post any questions or comments in one of the forums up higher. They get more activity up there. Welcome.
AL.

[Mand406]

I was also wondering if anyone the had weakness,experienced it kind of like a pulled muscle?My left arm started this on Monday and hasent stopped,it feels like I have worked out,just on that arm...Im going to the ER tonight....Im so sure I have this:(

[Mand406]

Has anybody heard of Dr. Alexsander Strande???No false hope for anyone...but I spoke with him on the phone today,and he claims that if you arent very advanced,that you can overcome ALS,and that he cant use the word "cure" because of legal reasons,anyone think its worth a try??He will send you the meds in the mail,or you can visit his clinic in CA.An imput??

[Mand406]

I do not believe that ALS is a death sentence. People can survive these debilitating neurodegenerative diseases, including ALS. I have seen patients completely eliminate all of the debilitating symptoms associated with ALS under my care. It typically takes 7-10 days to notice the first level of results. If the patient is compliant, they are likely to recover from ALS. Naturopathy involves using the body’s inherent ability to heal itself. The Naturopath simply assists in the recovery by advising the patient on herbs, supplements, diet and lifestyle changes.

These are the words from him...

[MtPockets]

Mand406,
I do not want to take hope away from anyone. But, when it comes to false hope I have to speak out.

If it has been said one time it has been said 100 times on the forum, THERE IS NO CURE FOR ALS. Period, end of story.

There are however thousands of people out there who would love to separate you from your money with false claims. Here on the forum we have investigated any and every claim, with none showing lasting results, or a cure. You are free to spend your money as you like, I have no problem with that. Just advising you beware of false claims that are not supported by medical evidence.

We go through this about ounce a month with someone hearing about stem cell injections, vitamins, detox, etc as a cure for ALS. There is no cure, but many people feel good about the vitamins and supplements helping to keep them in the best of health to prolong their lives as much as possible.

[southernmom]

Hello everyone - My best friend (we are more like sisters) has just been diagnosed with ALS. She's a young single mother and we are all just devastated. I am wondering if anyone knows of any signs to look for to determine if it's a rapid or slow progression. She has lost most of her muscle in her arms. Her left hand is curled up and stiff and she can't raise her arms above about chest level. She has some slurred speech and a feeling when she is eating like something is stuck in her throat. She can't stand on one leg without falling over. She has uncontrolled episodes of laughter and crying - often back and forth. Even though this is an emotional time for everyone the episodes aren't just because of that - it's something neurological going on.

[Mand406]

I am 28 tomorrow,amd I havent been diagnosed but I guess I ha wasting around my ankles for a few years now and didnt notice itI thought I had restles leg syndrome,thats ll it felt like,along with twitching...I had a couple of episodes of mild slurred speech,and now a constant twitch on my tongue,I have twitches in my face,feet,an legs,and a scalloped tongue..Just dont know what else this could be!Also,in the last week my left arm is slightly heavy,my jaw and swallowing feels off,and Im a little short of breath....I have heard of several recent cases of young women getting ALS in GA lately!How old is she,andwhen did her first symptoms start?

[jpruppe]

Hello Phyllis,
I am male 65 with ALS losing my voice over a period of about 6 months. I am sure there is a great deal of difference between communicating with someone you know well and to whom you can explain the problem, as opposed to someone who is busy and can't take the time to interact.

In order to get the words out, I have to exert myself, speak with force, and I am sure I am frowning. Thus I fear that my partner might hear me as angry, impatient, critical, or peeved. They could easily misunderstand my tone. My advice to you is to do what you can to explain that you are not expressing any of those negative feelings, but that you are forced to speak that way by your condition. Even print out a little card stating "Please forgive my tone--I am not angry, just need to talk loud."

I feel for you and hope this might help, John

[jpruppe]

As I lose the ability to speak, I also lose the ability to express a variety of tones of voice. Because I must exert myself, speak loud, and force the words out, everything comes out as angry, peeved, or impatient. My concern is that people will think I am expressing some kind of disapproval, whereas I am simply forced to speak that way.

[jpruppe]

Since my wife and I have been together for 23 years, communication is less of an issue for us than it would be for a new relationship.

[Mand406]

Im am just SOOOO scared,I know all of you are going through similar times,so can someone please help??I have 2 and 3 year old babies that need me SO much!!I didnt know that my leg twitching,and unknown wasting of my ankles were anything!I had woke up,4 weeks ago with my tongue twitching,and it hasent stopped..Only 3 weeks later both of my arms are sore and much weaker,what do I do?I dont mean to sound whiny,but Im alone in all this and terrifed!I also have over active reflexes,so I know its not PLS,I guess I know in my heart,but cant come to terms with my kds being without me,or them watching as I go through this!!

[Mand406]

I keep thinking constantly,if I do have this,which I am SURE,little things can be done like...Buttons on the floor of the special chairs for ones that can move their feet but not hands,IDK,I hav alot of ideas which Im sure we all try to imagine facing this disease...I just somehow cant give up hope,I realized that one of my friends dad was Dx,in 99,and is STILL building with his hands,and eating,there is always hope,and all of your heartwarming stories,and kind words make me strive for ANY hope that may be there!This may be the strongest group of people I have met!!

[kellmill]

My FIL was just dx last month. To the best of our knowledge, his symptoms (slurred speech) began in January 2007. He has experienced a rapid decline. The myopathy has affected his whole body (diaphram was affected early on). He will have a feeding tube and wheelchair by the end of the month. He also has dementia. This has been very hard for us to understand and we are all still trying to come to terms with it. We knew absolutely nothing of ALS, except for the name. I know there is no way to know how much time we have left with him and I wish so badly that we could know. It's hard to find a balance between hopeful and realistic. I am so glad I found this forum. I can't begin to tell you how helpful you all have been. I have been reading the posts like crazy for the past couple of days. I don't know if any sense can be made of this disease, but this is helpful. Everyone seems to be so genuine, caring and supportive.
Thank you all.

[MtPockets]

kellmill, and new members. Welcome to the forum. You have found a group of people who really understand what you are going through. I look forward to us helping each other along this rocky path we are all walking.

Happy Fathers day to all you fathers out there.

[Lissa]

I'm Lissa, my mom has ALS (10/07) she only has use of her right fingers now. She lives 2000 miles away. I'm glad I found the forum. I can't aways make the support group, I have 3 kids and the group meets on Saturdays.
PDaddy is in my area, Thanks for emailing back. The forum would not let me post a PM.

Lissa:-?

[PDaddy]

Hi Lissa, glad you are here, there are a lot of good people here. (I don't think you can IM until you make 10 posts.) I will IM you with our email and phone number, it sounds like you should either speak with my wife or daughter who is almost 25 yrs. About your age?

[PDaddy]

I just tried to IM my info to you and this popped up:

Lissa has chosen not to receive private messages or may not be allowed to receive private messages. Therefore you may not send your message to him/her.

So, you need to tweak your control panel (cp) to receive IM's..

[Al]

PDaddy PM me the info. I can send it to her if you like until she has those options available.
AL.