new guy

[Henry E. P. Straub III]

My name is Hank and I have dealing with problems since 1999 and went throught about 75 test and as many blood test as well and was first diagosed with CIDP and was put on IVG treatments for three days a month for about four years and I kept telling the doctors that I was getting worse so I went out to hershey Medical in PA and was diagosed with in six hours of testing that I had ALS and that was on 09-11-2006 so that is where I'm at today. Tkank you for listeing.

[Peg B]

Hi Hank,

I am sorry you have to be here, but Welcome! It sounds like you have had a long time of waiting and probably lots of worry. You will find lots of good people here and I hope this forum helps you much. Sincerely, Peg

[Henry E. P. Straub III]

Thank you for your respones. I'm new at this and have no idea how to even to view the members list since the system will not let me in it. Peg do you also have ALS ? I hope not.

[ZenArcher]

Hank, because you're a new member there are some features that won't be available for a bit. After you've been posting for a while things will open up. The administrators did this to help cut down on advertising and spam messages.

I was diagnosed in February 2007 at the ripe old age of 38. I don't live far from you either, I'm about 45 minutes west of the Poconos on I-80. I've been down your way quite a few times when I was doing sales. I'm a patient of Dr. Simmons and go down there every 3 months for clinic. Do you still go to Hershey or down to Philadelphia?

[liz]

Welcome, Henry. I hail from Lancaster and spent four years living in Easton when I was in college. Also worked in Allentown for a short while before I became a New Yorker. Sorry you had to join us; but, you're in good company here. I was diagnosed in November 2006.

[Al]

Hi Hank from up here in Canada. It sucks to have to be here but as you can see we're a friendly bunch from all over the world. Welcome.
AL.

[Henry E. P. Straub III]

I hope that your up and about, I'm still walking but not to good and I do have an electric wheelchair which you can not believe what it cost well over $58,000.oo and the voice machine cost $8,400.00 thank god for medical insurance. I haven't used either one yet but I'm ready. I have a history in the nuclucer submarine force in the US NAVY and some medical people are trying to find out if that may be some of the cause of my ALS. Well it really dosen't matter to me but for others who knows. I blame no one I have it so we will deal with it the best that we could and go on with life. Take care and God Bless.

[Henry E. P. Straub III]

Hank, because you're a new member there are some features that won't be available for a bit. After you've been posting for a while things will open up. The administrators did this to help cut down on advertising and spam messages.

I was diagnosed in February 2007 at the ripe old age of 38. I don't live far from you either, I'm about 45 minutes west of the Poconos on I-80. I've been down your way quite a few times when I was doing sales. I'm a patient of Dr. Simmons and go down there every 3 months for clinic. Do you still go to Hershey or down to Philadelphia?

Well I'm an old fart copared to you I will turn 64 in July so your old enough to be my son. I'm up on I-80 some times when I take the wife to the crossings to spend money which is nothing new. So how are you doing? I hope well. I travel to Hershey Medical Center every three months to get check out at the ALS clinic and since 09-06 I have been holding my own even though my speech is sometimes week or not clear and I walk with a cane for very short distances. Well you take care. God Bless you and your family.

[Henry E. P. Straub III]

Welcome, Henry. I hail from Lancaster and spent four years living in Easton when I was in college. Also worked in Allentown for a short while before I became a New Yorker. Sorry you had to join us; but, you're in good company here. I was diagnosed in November 2006.

It is nice to hear from others who share the same problems but life gose on and we play the cards that are delt to us this day and every day after. Lancaster was that next to Intercourse PA or Blue Ball PA well anyway that is nice country. So now you live in NY so sorry. Take care and God Bless you and your family and have a happy easter.

[CindyM]

welcome to the forum. Hank. I see you have met some of our great folks already. Glad you decided to join us! Cindy

[Henry E. P. Straub III]

welcome to the forum. Hank. I see you have met some of our great folks already. Glad you decided to join us! Cindy

It is nice to hear from you Cindy I hope that your doing well and your ready for Easter. I look forward in hearing more about you and if you have ALS. You take care and God Bless you and your family.

[panamokapal]

this is my first post, but i read the new posts everyday. i live on the east end of long island and travel to hershey every 3 mos. to see dr. simmons and susan. i was diagnosed in august 05 at 43 and have als over 4 yrs. now. my next visit is 4/9 at 8am and if anyone is going to be there then , lets say hello

[Henry E. P. Straub III]

this is my first post, but i read the new posts everyday. i live on the east end of long island and travel to hershey every 3 mos. to see dr. simmons and susan. i was diagnosed in august 05 at 43 and have als over 4 yrs. now. my next visit is 4/9 at 8am and if anyone is going to be there then , lets say hello

Well we have the same doctor and the same team at Hershey. My next vist is April 25th at 8AM tell susan that Hank said hello. Boy do you have a long trip every three months. Do you go the night before and stay in a Inn or lodge? it sounds like I'm the old man compared to the others. I wish you well in your fight and keep positive no matter what is thrown your direction.

[ZenArcher]

My next visit is May 7th but I may end up down there sooner to participate in one of their studies. You'll both get to see the new building before me.

[panamokapal]

in the colder months we come in the night before and leave right after. summertime we stay at the high meadow camp ground or a hotel for a week. we've been going to hershey park every summer for ten years. its well worth the trip with the care they give. in new york they don't do anything but tell you to go home and die. did you get lithium from dr. simmons since the arimoclomol has been put off again.

[ZenArcher]

I did. I had an appointment schedule two days after the Italian study was released. I emailed Dr. Simmons via Sue that I wanted to go on lithium attached the report as well as the studies I had found regarding other mechanisms. When I got to the appointment we spoke about it briefly and he wrote the script for the lithium and the blood work.

[Lorie]

It is nice to hear from others who share the same problems but life gose on and we play the cards that are delt to us this day and every day after.


I like your attitude and way of thinking!

Welcome!!

Lorie

[CindyM]

I agree with Lorie, Hank. No use whining about the cards we have been dealt.
(:-D this from the woman who just spent the last few days whining, lol.) I am glad you have made some friends on board who share your Doc. Hope you have a nice easter with your family!

[Henry E. P. Straub III]

My next visit is May 7th but I may end up down there sooner to participate in one of their studies. You'll both get to see the new building before me.

Well you may be right if I find the new building. I'm not involved with any studies and the only major medication that I take is Rilutek and I would think that every one is on that.

[Henry E. P. Straub III]

I like your attitude and way of thinking!

Welcome!!

Lorie

Well Lorie if we where to complain what good would it do it will not take away the illness and besides the good lord has a reason for everything even though we may not agree but that is just another mountian to climb and no matter how tired we become we must continue to climb for who knows what is on the other side.

[Henry E. P. Straub III]

I agree with Lorie, Hank. No use whining about the cards we have been dealt.
(:-D this from the woman who just spent the last few days whining, lol.) I am glad you have made some friends on board who share your Doc. Hope you have a nice easter with your family!

Carol we all complain and whin to a degree but everyone dose no matter who the are so you keep whinng because that means your a fighter just don't cry in your beer because it will just water it down and taste salty and we can't have that can we. Take care and keep in touch.

[Henry E. P. Straub III]

in the colder months we come in the night before and leave right after. summertime we stay at the high meadow camp ground or a hotel for a week. we've been going to hershey park every summer for ten years. its well worth the trip with the care they give. in new york they don't do anything but tell you to go home and die. did you get lithium from dr. simmons since the arimoclomol has been put off again.

I totaly agree with you about keeping active and doing the things that you can with out hurting yourself. I crawl on the lawn and work in the flower beds around our pond and yard and pull my self up using two chairs stacked on top of each other even though in takes so long to get it done it gives me something to do because one thing I will not do is to feel sorry for myself or blame someone for this disease. So enjoy your camping and family and keep active my friend as you have been.

[LindaB]

Hi Henry,
My name is Linda and I am new too. I can't figure out how to post to the forum either. I just found out last Tues that I have ALS and am still trying to adjust. It must be horrible to have gone so long with no diagnosis. I was first diagnosed last October with Myasthenia Gravis, but now that has changed. I am going to the ALS clinic at Columbia Hospital in New York in two weeks for confirmation.
I am so sorry to have jumped in on your post, but maybe you or someone can tell me where to start on the posting. I don't really want to be on this forum, as I am in denial, or devastated. I can't stop crying. Then again, I do want to be able to talk to someone like me. I have lost all means of communication. I haven't been able to speak for one year now. I am 64 years old , living in Milford CT. I have a wonderful husband who is taking care of me all on his own. I don't know what to expect at Columbia and am very scared.
I hope you are doing pretty good Hank. I am praying for everyone who has ALS that a cure will one day be found.
Linda

[liz]

Hi Linda -

Welcome to the forum. Denial makes sense when you're told you have ALS. Who wants to hear that?
Don't worry if you fumble around a little as you get used to the forum. You'll catch on quick enough. There are moderators (Cindy and Al) who will jump in and give you direction if it looks like you need it.

Liz

[Al]

You're doing fine posting Linda.
AL.

[Henry E. P. Straub III]

Hi Henry,
My name is Linda and I am new too. I can't figure out how to post to the forum either. I just found out last Tues that I have ALS and am still trying to adjust. It must be horrible to have gone so long with no diagnosis. I was first diagnosed last October with Myasthenia Gravis, but now that has changed. I am going to the ALS clinic at Columbia Hospital in New York in two weeks for confirmation.
I am so sorry to have jumped in on your post, but maybe you or someone can tell me where to start on the posting. I don't really want to be on this forum, as I am in denial, or devastated. I can't stop crying. Then again, I do want to be able to talk to someone like me. I have lost all means of communication. I haven't been able to speak for one year now. I am 64 years old , living in Milford CT. I have a wonderful husband who is taking care of me all on his own. I don't know what to expect at Columbia and am very scared.
I hope you are doing pretty good Hank. I am praying for everyone who has ALS that a cure will one day be found.
Linda

Linda I would say that denial is very normal reaction to hearing any tragic medical news but you will fight this and with your husband and family they will make you feel that every aspect of life is worth fighting for. My speech is also going but I now have a computor system that talks for me if I need to use it and that same unit has every function as my lap top including internet and can be attached to my wheel chair for communication any where in the world by using the sprint card that I have,so you may want to look into something like that and ask your doctor to perscribe it for you. their is so much help out their for you just ask your team at the hospital on how you can get the help you need and this will help you as well as your caregivers. You take it one day at a time and smile and share the love you have with others with in your family and friends.

[hopingforcure]

Linda,
You have found a group of friends, we have all been were you are. No matter how and why we are here, we all have a story to tell, and we can all related to what you are going through. Posting up on the general discussion and general forum and you will get to know many. We are all in this together, as time goes things get a little easier. And also welcome to the other new members who posted on this thread..

[LindaB]

Thank you for welcoming me. I think I may have found the thread where new people are supposed to tell their story. I think i will write my story on there. Hank--thank you so much for the information on the computer devise. I live on my laptop because my five children are one hour from me . It is the only way I can communicate with them and my grandchildren and sister. Any info you can give me on the unit will be very useful to me. I always have so much to say , and it would be wonderful to be finally heard. Everyone seems very nice on the forum. Maybe it is too early for me to start posting, but I am going to try. I really need some help emotionally. I will post on the new members forum, (hopefully). Linda

[Al]

Hi Linda. If you post up in the General discussion area more people will see your posts. If you go back one page here there are sticky's at the top of the page that tell you how to post etc.
AL.

[Henry E. P. Straub III]

Thank you for welcoming me. I think I may have found the thread where new people are supposed to tell their story. I think i will write my story on there. Hank--thank you so much for the information on the computer devise. I live on my laptop because my five children are one hour from me . It is the only way I can communicate with them and my grandchildren and sister. Any info you can give me on the unit will be very useful to me. I always have so much to say , and it would be wonderful to be finally heard. Everyone seems very nice on the forum. Maybe it is too early for me to start posting, but I am going to try. I really need some help emotionally. I will post on the new members forum, (hopefully). Linda

Linda the unit I have is the DynaVox Vmax their E-Mail address is dynavoxtech.com Phone number direct is 1-412-381-4883 and I was refered to them by my team at Hershey Medical ALS clinic and Good Shepherd Rehab in Allentown PA. I hope that when you get to the ALS clinic they will be able to help you deal with your emotions just remember that you have to tell them how you truly feel and start writing things down now so you will have those items to show them plus those who are going with you will also be able to express to them on what your needs are. Keep in touch and we are all praying for you and your family.

[hopingforcure]

Hank,
just wanted ot say that you are already proving to be a helpful, thoughtful member. I am in awe everyday from the people I meet through this board and disease.
It sounds silly, but I am and wil be a better person for it... The disease stinks, but the people it surrounds sure dont.

[Henry E. P. Straub III]

Hank,
just wanted ot say that you are already proving to be a helpful, thoughtful member. I am in awe everyday from the people I meet through this board and disease.
It sounds silly, but I am and wil be a better person for it... The disease stinks, but the people it surrounds sure dont.

I agree on the part where you stated the disease stinks but what are we going to do, well one thing is to remain strong and to keep active and do what ever you can with out over doing it and rest when your tired other then that stay close to the ones who love you and are positive as you must be and remain that way not for anyone but yourself. Smile