Just diagnosed

[JackieEngland]

Hi, I'm new on this forum but would just like to say that my husband and I are devastated to hear his dx which was last week. He was seeing his neurologist for 2 and a half years before he gave him his dx last week. Can I ask what tests people have had to get to the diagnosis? And how long they took to get their diagnosis? Thanks.

[joelc]

I am very sorry about your recent diagnosis! I hope you can find the help, love and support you need here, we have a lot of caring helpful people here - Welcome!

You can also look at the "Do I have ALS? Is this ALS?" forum and find some criteria for diagnosing ALS.

[dsiple]

Jackie

Welcome to our little family, but I am very sorry that you had to find us. You will meet a lot of very knowledgeable people here and make some friends along the way.

As for your question, I had 2 EMGs and that combined with the clinical presentation of symptoms, was enough for my diagnosis. Luckily, my progression has been somewhat slow, until the last year or so, but I attribute that purely to stress. I was diagnosed 5 years ago and am still plugging away. I have no trache, feeling tube, I know my limitations as to what I can and can't eat and have made adjustments as needed to how I live my life. Please tell your husband to remain as positive as he can, as much as he can. That will help a tremendous amount. Your family will be in my thoughts and prayers.

[BethU]

Hi, Jackie ... I'm so sorry about your husband's dx. I know what a shock it is.

It took two years and two months (and seven neurologists) after I first noticed symptoms before I received the dx of ALS, although ALS was mentioned as a possibility from the start. I also had three other dx of other conditions before they settled on ALS. I had a ton of blood work done, an MRI and two EMGs.

It took me a few weeks before I could even stand to see friends or family members other than my husband after the dx, because I knew I would lose it if I did. I think it was really a couple of months before I could wrap my brain around the situation. As the weeks went by, I realized that my big job was going to be managing it all ... finding relief for symptoms, going to a zillion doctors and clinics, and filling out endless paperwork.

I know you will find support from the magnificent caregivers on this forum.

Take care.

[thelma313]

Hi Jackie,

Welcome and so sorry you had to seek out this forum. My dad was diagnosed in August 2008. He started showing symptoms in February so it took 6 months and 2 EMG's. We never saw it coming. It was a complete and total shock. I still can't quite believe it.

You will find a lot of support and great advice here. The people on this forum are amazing and will provide you with a real source of comfort.

[olly]

hi jackie.
welcome to the forum.
it took several years ruling out other things for me.
tests were mri's,nvc,blood tests,genetic testing and more.........all normal/clear.

if his progression is slow then that is good and i hope it continues that way.

[Danijela]

Hi Jackie,

It took about 6 months from my partner's visit to his GP to his diagnosis. He had:
1 mri scan
2 emgs
various blood tests
physical examination by two neurologists

Interestingly, before any tests were conducted, and while we were on holiday abroad, he saw a neurologist who did a physical examination and suspected MND on the basis of brisk reflexes and hand atrophy, but obviously could not provide diagnosis without further tests.

Wishing you all the best.

[Jennifer51]

Sorry you are here and welcome. My gp said from day 1 that it could be the worst. Saw neuro next day as we have private health. Neuro said the same within minutes of me walking in, tests....ton of blood tests, MRI, EMG and NVC ,Lumbar puncture and within 3 weeks it was confirmed. Contact the mnd association, get the DLA (disability Living Allowance) and carers allowance all in progress. There is a lot of help out there, but in our experience you have to be vocal to get it. Ask as many questions as you like on here, you will get the answers.
Thoughts are with you, you know we all understand what you are going through.

[JackieEngland]

Hi Everyone,
Thank you for your kind words and full answers to my questions. I have found quite a lot of information on this site and will continue to. We are both in limbo at the moment waiting for the next step so to speak. That is an appointment at the nearest MND centre and getting any medication he needs to help him. I'm scared of depression but hopefully it is a knee jerk reaction and we will soon start thinking positively and live for the day not the future. Thank you all.

[rocmg]

Jackie... my mum was diagnosed just over a month ago. I read a post on here by someone once to the effect of: "if you think the day of diagnosis was the worst day of your life, things can only get better." that helped me.
this is a great forum, full of great people and great advice. when i first came here i was horrified that anyone could use an emoticon in their posts. i kind of assumed that they would be devastated and depressed all the time. now look at me :-D i'm still working on it... but i'm definitely a little better than i was 4 weeks ago.

remember, you and your husband will smile and be happy again. take care.

[tgif]

The best advice that I received was from my mom; she said to live ONE DAY AT A TIME! It was very difficult to do when we first heard the diagnosis, but it is easier now. And we continue to pray that there will be a drug trial that can help slow the progression until a cure can be found. There is SO much positive news about the research that is being done!

[beverly rees]

Hi Jackie,
My husband David was diagnosed in October at Stanford and we got a second opinion from UCSF which confirmed the diagnosis. He had emg, mri, blood tests and two neurological exams.

We were also very devastated to get this diagnosis, however we are now 5 months from diagnosis and life is still pretty good. He is weaker in his arms and hands but still able to do most things. I have found our ALS support group to be very helpful along with this forum. Alot of my fear has been reduced because there is so much support and help to deal with every situation we will face.

Hope this helps and I too am so sorry for your husband's diagnosis. Bev

[kylisa]

I, too, am so sorry to meet this way. Here is my mother's timeline.

My mother began showing signs in May 2007. She was diagnosed in Feb 2008. She had 1 emg that showed many areas of motor malfunction without any sensory loss. I will say that she saw a neurologist from July until Nov 2007. He did not diagnose her. He got defensive when questioned about her situation so, I took her to a neurosurgeon that diagnosed her in 2 visits. She was very good to us, even while being very candid about the disease.

Thinking back, I believe she began subtle changes as early as summer of 2006. I can remember her saying she was getting some cramps in her calves when she walked. She also would say that holding my baby daughter smothered her.

The first major sign was a dropfoot. Then, her eating began going downhill. Next, her voice started going. Then her walking problems began to escalate. Next, her left arm withered. Now, she is in the bed except when we get her up to go to the bedside potty.

So, she is fitting into the 1 to 3 years given by the medical establishment. She has handled the situation with grace. Even now, the occassional breakdowns she has are normal. I would cry boat loads if I were in her shoes.

[rose]

Hi Jackie,

Welcome to the forum. It seems like people come to terms with this in different ways, give yourself and your husband time. Its hard, no denying, but its like anything else that gets thrown at you in life, you'll find ways to cope.

It took me about 20 months to get a diagnosis, I had many of the usual battery of tests, I did not have a muscle biopsy or a spinal tap, & was treated unsuccessfully for possible autoimmune cause for about a year.

Stress and physical fatigue are bad, laughter is good. Maybe that sounds too simplistic, but these are concepts that have been constants for me.

I wish you and your family the very best, and look forward to reading your posts.

[hopingforcure]

I once heard a statement. And I feel like it holds true.


"What at first seems unacceptable, later becomes acceptable"

[Carolvh9]

Hi, when the neurologist diagnosed me with "probable" ALS a week ago my sister and daughter were beside me. We took it like champs and went out for lunch afterwards. I knew I had it from the first toe cramps 10 months ago. I've had a brain, lower spine, upper spine and neck MRI, 2 nerve conduction tests and 1 EMG. Now I'm scheduled to see a Johns Hopkins neurologist on April 22, then she'll get me into an ALS clinic at Hopkins. So far I haven't had a prognosis or timetable. Can't make any plans for the future. I'm 65 and have grandchildren about 240 miles away. They cried when they heard about my disease. The docs haven't told me that if it starts in the legs that the disease progresses more slowly. My plan is to pull the plug when I can't walk anymore. Then I won't be able to live in this 3 level house anymore and will have to abandon all my furniture, pets, friends and family. This disease is the worst possible thing you can have but I knew I had it because my grandmother died of it and it's preyed on my mind ever since. I'm going to control it--it's not going to ruin my life.

[Marjorie R. Wilcox]

Hello, pleased to meet you. I am so glad you said that last sentence... that you are going to control it and that it won't ruin your life. With determination you can make your life a pleasure or disaster. Whatever is going to be, will be, so you might as well have and make great memories for yourself and those around you.

I know this sounds so cold and I apologize. My Rick is enjoying every day and still getting around... carefully... still driving etc. and we're just making each day as special as we can. We go, we spend, we spend times with family and friends.... and we laugh whenever we can.

I hope that you and your family don't despair and that once everyone gets used to the dx, you just go on as before, just a bit differently. I'll be watching for your posts. Bless you.

[rose]

... welcome to the forum (I'm having computer problems so this will be brief) just wanted to share that I go to the Hopkins ALS clinic. My neurologist is also there, and they have been just wonderful to me and my family. Good luck to you, and keep up the positive attitude. :)

[brendapals]

welcome jackie and carolvh9

You've found a great place to find friends,info,support,ideas...the list goes on and on. We're are sad that you had to find us, but also hopeful that you will find comfort in our "forum family".

I was dx in 6/08, with symptoms dating back to about 12/06. I too was being treated for autoimmune disease. I had numerous blood tests, CT scans, MRI of my neck and spine. First EMG in 6/07 showed mild carpal tunnel syndrome. I requested an EMG in 10/08, just to make sure my 2nd neuro was right with the dx.

He was, and the EMG confirmed it.

Now that I'm over the 10month mark, I still tell everyone I meet " I have ALS, but it doesn't have me!"

I talk like a drunken sailor, but other than that, life is now at my "new normal". Our 3 boys laugh and play like always, and my hubby and I laugh and cry more often.

The "initial shock" is different for everyone, but once you're thru it, life can be very fulfilling.
Never give up,
Never let up,
Never lose faith,
brenda

[Carolvh9]

Hi Rose, gee whiz, I'd just love to know what the ALS clinic at JH really does. Nobody has told me anything about it. I'm a little peeved that I have to see another neurologist to get into the clinic. If she insists on performing another EMG or nerve conduction test when I just endured both 2 weeks ago, I'm walking out. I'm done with needles. Can you tell me what they do? Does it involved mainly accommodating yourself to the disease? Appliances, etc? More testing? Maybe I'll see you there.
Thanks for any info.
Carol

[rose]

Carol,

First, virtually every member here understands the growing frustration with tests. But, as ALS is diagnosed by process of elimination, there really isn't any other way. Over on the "Do I Have ALS, Is This ALS?" forum page of this website, there is a sticky at the very top of the page, subject is "Requirements for ALS Diagnosis" (or something to that effect) If you read that, you'll get a better idea of why the testing has to be done. Its very specific wording doctors are required to comply with in saying you possibly, probably, or definitely do have ALS.

The neurologist I see at Hopkins is Dr Charlotte Sumner. She gave me the most thorough clinical exam I've had at any time, anywhere. She did not feel I needed a muscle biopsy, or the lumbar puncture (spinal tap) as these two tests are used if a person had different symptoms/clinical findings than I did.

Because my weakness started in the throat area, rather than arms or legs, she felt it necessary for me to have a special coned down version of an MRI, saying that the MRI I had of just my head was not specific enough. The brain stem needed to be seen in greater detail. She also ordered a 24 hour urine collection to test for heavy metals. If I'd had these tests already, she would not have repeated them.

However, even though you probably won't need to repeat tests that had clear cut results (I didn't even have to have repeat blood work) ~ it is the practice at Hopkins for the doctors to want to interpret test results themselves, or have a Hopkins radiologist, pathologist (or whatever specialty applies) see the raw data. So if you've had biopsies, the slides should be sent from the lab that has them stored, to Hopkins (FedEx is an easy way) or you can pick it up, and bring with you to appointment. This also applies to actual MRI films, etc. Any and all previous test results, should come with you, or be sent ahead.

You should receive an information envelope in the mail from them which will be helpful to you.

Once you're "in" the Hopkins medical system, they take such good care of you, not only for the physical problem which brings you there, but also as far as handling scheduling future appointments, etc. They do everything they can to make it easy on you, and they're efficient about it too.

Virginia is the administrative coordinator for the ALS clinic, a very warm and friendly lady. My last appointment there (mind you, my leg weakness is not that severe) .... when we were walking past the weighing scale, it was in use. So a little while later, instead of me just walking out of the the little exam room and around the corner to the scales, here she came, rolling it in to me!

The ALS clinic was started by its director, Lora Clawson. Lora has been out a few months, being treated for breast cancer, but she's still very involved behind the scenes. She's just great, will try to answer any and all questions you might have. I'm thinking by time you're seen there, she (hopefully) will be back at work.

Someone else on this forum once likened an ALS multidisciplinary clinic visit to speed dating! You'll sit in a little exam room, with whatever family and friends who come along with you, then the various specialists come in to see you. There is a common area which has always had food set out for the hungry, whether it be you, or whoever accompanies you. There will be cans of soda, bottled water, sandwiches, brownies, that sort of thing.

Virginia will bring you back from the general waiting area. She will get your weight. Someone else will have you do the little breathing test where you blow into the tube, and check blood pressure.

Next will be Lora Clawson, and if she's not back yet, then it will be Richard Kimball (yes, just like the doctor on The Fugitive LOL).

You'll be asked lots of questions about how you're feeling, what you would like to know more about, etc.

After this, a physical therapist will come in, and access your strength, make recommendations about orthotic devices or other assistive devices if they could help you, write out a script for physical therapy if it might be beneficial, etc.

Then, the occupational therapist comes in, and talks with you about ways to make your life easier, gadgets available, methods you can use to put less stress on the weaker areas of you.

Then, there are the social workers, a rep from the MDA should be there and will explain to you about services available to you, and about the equipment loaner closet.

Then, the doctors/researchers who are doing studies and trials will pop in to find out if you're interested in participating.

Somewhere along the way, Virgina will come back in with an appointment card made for you for your next visit.

I think most people are seen every 3-4 months at first. They will always be very interested in your breathing function as this is the biggest factor in keeping up a PALS health. I was scheduled a separate visit to see a pulmonary specialist who works with the clinic. I had the respiratory function tests done in one part of the hospital, and then went up to the ALS clinic area to meet with him afterward.

Things have changed greatly in the medical field since your grandmother's time. Even though there still is not a cure found, PALS receive much better care, more is still known than there used to be about what is important to do, or not to do. Give yourself time to come to grips with this, its a process that varies with the individual.

I hope this helps, take care :)

[Carolvh9]

Thanks a lot Rose. That's about what I thought the JH clinic would be up to. That's great for you, but not for me. I've got an appt. with a physiatrist that I saw first last year on April 16--Monday. I'm taking my MRI CDs with me and she's going to give me the lowdown (my sister will be there too)--where the stinking disease is now. The EMG included 2 sticks in my face but the neurologist didn't find anything near my mouth or chin. I've tested my tongue myself ever since the toe cramps by sticking my tongue out and moving it rapidly. So far I don't think it's a bit slower. My grandma had bulbar ALS--always could walk, etc. I'm relying on Monday's appt for a prognosis and if I get it I'll cancel the JH clinic. I don't want gadgets, appliances, a wheelchair, a Bipap, feeding tube, etc. My shrink gave me 15 Ambiens yesterday. I'm outtahere as soon as I can't go up and down the steps or walk my dog. Thanks so much for the info and don't consider this a tremendously depressing message. I feel so relieved not to be trapped and helpless anymore. Yesterday I was so defeated when my good foot started cramping. I was looking longingly at my car and wishing it didn't have 6 airbags. Now I'm free to decide when I've had enough. I've got my cats and the dog re-homed the minute I'm kaput. So I feel about as great as you can feel when you've got a fatal disease. Thanks again and good luck. Carol

[joelc]

Carol, just for the record - ALS does not have to be fatal unless you want it to be.

You are free to decide whether you want to live with it or die, that is your choice.
But enough talk about ending your life. STOP.

Take your medicine and visit your shrink, but please cease the doom and gloom.

[rocmg]

Hi Carol... I agree with Joel, although I am not a PALS, not even a CALS quite yet, as my mum is still able to do everything by herself and only has problems with her speech. I understand where you're coming from though, in an uncontrollable situation you are comforted by the fact you will have ultimate control over your body. However, it could be a very long time before you have to think seriously about re-homing your cats and dogs. They might even be gone from natural causes long before you. I saw a man in the clinic yesterday who has had MDA in his legs for 8 years. He walks with aid of a cane and had some sort of splint in one shoe for the weaker leg. From my understanding (I was eavesdropping on a conversation he was having with the receptionist) he is still able to enjoy gardening. 8 years is a very long time for new developments and this is a very exciting time for ALS researchers. Who knows what the coming years, even year, will bring in terms of research. Of course it's difficult not to think about death when you're forced to stare it in the face, but it sounds like your family and grandkids aren't ready to let you go anywhere just yet. Stay strong.

p.s. any good neurologist will not give you a prognosis. they can give you an average -- but there are people survive well beyond their data-sets. you're not a bottle of milk with an expiry date!

[Al]

Hi Carol. I'm just going to jump in here and offer a suggestion. Quit trying to bring everyone here down. If you want to wallow in self pity go ahead. People here have tried to offer advice on how to cope with your problem. Take the advice or take off. If you really wanted to off yourself, you don't need the car with 6 yes count them 6 airbags. Find a bridge or find help. Don't come here moaning about how bad you feel. There are a LOT of people here worse than you and they're not whining. They embrace every day. Try it. This may sound brutal to you but it's honest.

AL.

[hopingforcure]

Dear friend Al, thank you for the message, feeling exactly the same as you do. I think this is one of the kindest helpful uplifting board around, and so many of us feel like we need to embrace everyday, so if we cannot encourage that of Carol than not much more we can do.
Carol I think if you would look around it sounds like you should think what Lou G said himself. "I might have been given a bad break, but I have a lot to live for"
I do not mean to be preachy, but If my 14 year old can have this on his personal quotes on his facebook and my space and he is seeing his mom dealing with this disease, than you should look around and think of what you have. Your daughter is a Lawyer, she must love you, your dogs and cat's surely do not care if you are sick or healthy, rich or poor, they love you unconditionally. Think one more time what the other Cals and Pals have said.. I think you might reconsider your decisions, if not let the rest of us, have our hope..

[shrimpbox73]

Carol,

First, virtually every member here understands the growing frustration with tests. But, as ALS is diagnosed by process of elimination, there really isn't any other way. Over on the "Do I Have ALS, Is This ALS?" forum page of this website, there is a sticky at the very top of the page, subject is "Requirements for ALS Diagnosis" (or something to that effect) If you read that, you'll get a better idea of why the testing has to be done. Its very specific wording doctors are required to comply with in saying you possibly, probably, or definitely do have ALS.

The neurologist I see at Hopkins is Dr Charlotte Sumner. She gave me the most thorough clinical exam I've had at any time, anywhere. She did not feel I needed a muscle biopsy, or the lumbar puncture (spinal tap) as these two tests are used if a person had different symptoms/clinical findings than I did.

Because my weakness started in the throat area, rather than arms or legs, she felt it necessary for me to have a special coned down version of an MRI, saying that the MRI I had of just my head was not specific enough. The brain stem needed to be seen in greater detail. She also ordered a 24 hour urine collection to test for heavy metals. If I'd had these tests already, she would not have repeated them.

However, even though you probably won't need to repeat tests that had clear cut results (I didn't even have to have repeat blood work) ~ it is the practice at Hopkins for the doctors to want to interpret test results themselves, or have a Hopkins radiologist, pathologist (or whatever specialty applies) see the raw data. So if you've had biopsies, the slides should be sent from the lab that has them stored, to Hopkins (FedEx is an easy way) or you can pick it up, and bring with you to appointment. This also applies to actual MRI films, etc. Any and all previous test results, should come with you, or be sent ahead.

You should receive an information envelope in the mail from them which will be helpful to you.

Once you're "in" the Hopkins medical system, they take such good care of you, not only for the physical problem which brings you there, but also as far as handling scheduling future appointments, etc. They do everything they can to make it easy on you, and they're efficient about it too.

Virginia is the administrative coordinator for the ALS clinic, a very warm and friendly lady. My last appointment there (mind you, my leg weakness is not that severe) .... when we were walking past the weighing scale, it was in use. So a little while later, instead of me just walking out of the the little exam room and around the corner to the scales, here she came, rolling it in to me!

The ALS clinic was started by its director, Lora Clawson. Lora has been out a few months, being treated for breast cancer, but she's still very involved behind the scenes. She's just great, will try to answer any and all questions you might have. I'm thinking by time you're seen there, she (hopefully) will be back at work.

Someone else on this forum once likened an ALS multidisciplinary clinic visit to speed dating! You'll sit in a little exam room, with whatever family and friends who come along with you, then the various specialists come in to see you. There is a common area which has always had food set out for the hungry, whether it be you, or whoever accompanies you. There will be cans of soda, bottled water, sandwiches, brownies, that sort of thing.

Virginia will bring you back from the general waiting area. She will get your weight. Someone else will have you do the little breathing test where you blow into the tube, and check blood pressure.

Next will be Lora Clawson, and if she's not back yet, then it will be Richard Kimball (yes, just like the doctor on The Fugitive LOL).

You'll be asked lots of questions about how you're feeling, what you would like to know more about, etc.

After this, a physical therapist will come in, and access your strength, make recommendations about orthotic devices or other assistive devices if they could help you, write out a script for physical therapy if it might be beneficial, etc.

Then, the occupational therapist comes in, and talks with you about ways to make your life easier, gadgets available, methods you can use to put less stress on the weaker areas of you.

Then, there are the social workers, a rep from the MDA should be there and will explain to you about services available to you, and about the equipment loaner closet.

Then, the doctors/researchers who are doing studies and trials will pop in to find out if you're interested in participating.

Somewhere along the way, Virgina will come back in with an appointment card made for you for your next visit.

I think most people are seen every 3-4 months at first. They will always be very interested in your breathing function as this is the biggest factor in keeping up a PALS health. I was scheduled a separate visit to see a pulmonary specialist who works with the clinic. I had the respiratory function tests done in one part of the hospital, and then went up to the ALS clinic area to meet with him afterward.

Things have changed greatly in the medical field since your grandmother's time. Even though there still is not a cure found, PALS receive much better care, more is still known than there used to be about what is important to do, or not to do. Give yourself time to come to grips with this, its a process that varies with the individual.

I hope this helps, take care :)
Dr.Charoltte Sumner is the best! My Husband was misdiagnosed for over a year.He had drop foot,which led to more weakness.I live in NJ and was told it might be CIDP.We drove to Hopkins and were treated so well.Our insurance refused to pay.So now we go to UPenn.Thank God Dr.Sumner still is aware of our insurance problem but still keeps in touch.She is one of a kind!! The dx stinks no matter who tells you,but knowing you are in good hands helps.

[Al]

Law of the Garbage Truck

One day I hopped in a taxi and we took off for the airport. We were
driving in the right lane when suddenly a black car jumped out of a
parking space right in front of us. My taxi driver slammed on his
brakes, skidded, and missed the other car by just inches! The driver of
the other car whipped his head around and started yelling at us.

My taxi driver just smiled and waved at the guy. And I mean, he was really
friendly. So I asked, 'Why did you just do that? This guy almost ruined
your car and sent us to the hospital!' This is when my taxi driver
taught me what I now call, 'The Law of the Garbage Truck.'

He explained that many people are like garbage trucks. They run around
full of garbage, full of frustration, full of anger, and full of disappointment.
As their garbage piles up, they need a place to dump it and sometimes
they'll dump it on you. Don't take it personally.


Just smile, wave, wish them well, and move on. Don't take their garbage
and spread it to other people at work, at home, or on the streets.


The bottom line is that successful people do not let garbage trucks take
over their day.

Life's too short to wake up in the morning with regrets,
so...Love the people who treat you right. Pray for the ones who don't.


Life is ten percent what you make it and ninety percent how you take it!


Have a blessed, garbage-free day!

Someone sent this to me this evening. Joel thought it fit well here. So did I.

[BethU]

Carol ... I'm so sorry for your probable dx, and for the stress you're going through right now. Having seen your grandmother suffer decades ago, and having carried a fear of this for many years makes it that much scarier.

From my own experience, and from reading this and other forums, I think what you are going through ... the fear of the future and anticipating everything that could possibly happen ... is the worst emotional state you'll go through. As Rose said, you'll discover that treatments for ALS symptoms are vastly improved since your grandmother's era. Trust me (or not) ... but it gets better, not worse.

You don't even have a confirmed dx yet. You say you don't want to live using a lot of medical equipment, but I assume if you had a heart attack, you probably wouldn't reject heart surgery, stents or pacemakers. If you broke your leg, you'd probably accept a cast and a crutch.

You can learn to live with ALS ... really live, not just survive. With grandchildren who love you so (of course they cried learning that you were sick) and kids you are proud of, and who are so supportive of you, I'm sure you will want to enjoy them as long as possible, and give them memories to cherish of their beloved mother and grandma. Maybe between bouts of worriying about your future, you can think up some ways to build memories in the present that will comfort your family, and which they will cherish all their lives.

Stick around a while. When the shock wears off ... it's perfectly natural ... start thinking of ways to help your loving family cope.

[t34gib]

Carol, I understand how you feel right now. I got a dx in January and was devastated. I am the one who has always taken care of everyone and the thought of having to be taken care of was appalling to me. I just can't imagine it. I thought I want to be the one to
decide when I go. A few months have passed and I have calmed down. I went to Mayo just today for a drug study visit. I have Progressive Bulbar Palsy. I came to the conclusion, as someone above said; I can't change what is for it already is. What I can control is how I handle this disease. I admire all the posters here in this forum and have always felt that they are far better people than I in the way they are handling this disease. Then I thought, they are the same as I and I am absolutely sure that each and everyone of them have felt the exact same way as I do at times. Completely hopeless and scared to death. But it does change. You go on day by day and realize that "I am still here". I still work full time and will until I can no longer perform my job.
My husband and I were walking at the Clinic today and I suddenly realized that I need to live everyday. I can't sit around and cry and wait to die, because that may not happen for a very long time, and I don't want to get to that point and look back over the wasted years that I could have enjoyed. It is what it is. Every human being is dying from something. Some will die tonight from any number of diseases or accidents or murders. For me, it is not how I die, but how I live. I have Children, Grandchildren, sisters, brother, etc. I want them to remember me as a fighter and as a person who sought to overcome any limitations this live gives me. So, you will do what you will do, it is your decision. To me, Life is worth fighting for.
I saw an interview once of a 10 year old boy who had a fatal disease and the reporter asked him, don't you sometimes think why me? The boy came back immediately with, Why not me? Would I, given the decision, give this to someone else? No it is what it is and i have to expend my energy on living and not worrying about dying. Life is a gift to all of us. I choose to be grateful the gift.
I hope you find a way to come to terms with all this. It is very hard in the beginning, I know. I am still dealing with it, but I think I have finally come to an acceptance.
I will live my life, however long it may be. In the process, I will do all I can to help researchers and Doctors do whatever they need me to do in order to bring them closer to a cure. Maybe the next generation won't have to deal with all this. I have not yet found my purpose in life and as I told my Doctor, wouldn't it be great to be the one who helped you guys find a cure?
Carol, I hope you choose life.
NancyS

[rose]

Shrimpbox,

Yes, Dr Sumner is wonderful ~ and, I think (from the comments of others on this forum) finding a neurologist who is excellent as well as empathetic, is a rare quality that few seem to have.

Carol,

I've been having computer problems, which may or may not be resolved. But, mostly because of the effort to read and respond to anything online the last few days, I'd missed all of your other posts. It took me over an hour this morning to write that response to you, due to my technical difficulties here. I didn't realize you were just trying to find out if you'd be wasting your time at the clinic, as their purpose is to help PALS with the quality of their life and their health. I don't feel it was time squandered though, as others with questions should benefit from it in the future. I also hope, if your diagnosis continues to stand, that you don't cancel your appointment. Sharing how you feel about the prognosis for your future with them will help them help you.

We all find our own way with what life has dealt us. ALS does not discriminate, it enters all walks of lives. Some people may be living what they themself, or others may consider the ideal life, contrasted with someone who may already be unhappy or just feel unprepared to take on new challenges. We can't choose when our own personal calamity will strike.

I hope you give yourself some time to come to terms with what you'd already been dreading was wrong.

[hopeful warrior]

Hi, Jackie. My husband was diagnosed in Feb. 2007. He was having trouble with his grip( holding a glass, brushing his teeth) and his fingers would become "locked up" when he worked. (He was a welder.) He first went to our local family practioner who sent him to a neurologist. He ran an EMG, head and neck CAT scan, blood tests, urine tests and a shoulder to waist scan. The neurologist sent him to KU Med Center in Kansas City for a 2nd opinion. They ran the same tests plus an additional EMG. At the time, we thought it took awhile, but in retrospect, he was diagnosed within 3 months of his first appointment with our family doctor.

[brendapals]

Carol,

I hope that you have listened to the advice on here. Everyone is right on, we all have bad days, and that's ok.

But it is not healthy at all for you to talk on here about ending your life. I pray that you have contacted someone, a friend, a preacher, a nurse, the ER and found a coping strategy by now.

It doesn't take many muscles to smile (my mom always told me that:))
God bless you,
brenda

[wheeler641]

carol, I just had to chime in on this one. I reread your post several times and you said you were diagnosed with "probable als"" There are several diseases that mimic als, that is why it is so important to keep your appoinment at the als clinic. You should not be having such negative thoughts when your diagnosis it not yet comfirmed 100% There are several people on this board which were initially diagnosed with als, only to find out it is something treatable later on. I do not beleive cramping in your toes(I could be wrong) indicate a progression. I have had cramping in my toes and calves for over 5 years now, not getting any worse, no weakness and I do not have als. I have tested positive for Lyme one of the diseases that mimic als. I do not know how I would react if I had als, but I know for sure I would fight like hell to stay with my family as long as possible.

[momof three]

T34gib,
I have been "lurking" on this forum for several months because I am one of those who fear that I may have ALS. I haven't posted until today because I don't have any real diagnostic basis for those fears and have yet to go to a doctor for the symptoms I think I have. I am 38 years old with three beautiful children ages 12,9, & 5. I have a wonderful, caring husband who has been so supportive of me and recommended I talk to someone (a psychiatrist) about these fears. The reason I have not gone to a doctor about these things is that the beginning of my "symptoms" corresponded directly with an incredible amount of stress I was under with my job, family, working on my master's degree,etc., and I have a history of being a bit of a hypochondriac under those types of situations. I am only posting today because your message about living for today and enjoying your family, friends, and life itself is so true! I am working on that every day myself. ALS is incredibly frightening, but I have been so impressed over these past few months with those who are battling it with such grace and strength. The people on this site are so helpful and kind to those who are afraid or sad or just plain angry about the cards that have been dealt to them. So, thank you for your message. I am going to stop thinking about how I feel today and spend some real quality time with my three children.

[joelc]

momofthree, excellent! Good for you!

None of us knows what will happen to us today or tomorrow so worrying about something like whether we have ALS or not is senseless, IMHO.
So yes, spend some quality time with your family and friends and don't worry about tomorrow!

[Felicia38]

Welcome Jackie, Sorry to hear about your husband. This forum has alot of great people, who are very supportive. Hang in there.