New member from India

[alspatient]

Hi,
I am from India. Let me call myself Bob. That will be easier to remember. I joined this forum because we don't have one in India. I was very active and athletic prior to being afflicted with ALS. It is hard to believe that I used to jog and walk for about 10 Kilometers everyday six days a week. I taught my son to swim and bicycle and made him start jogging with me. I had a successful career till 1998 when I noticed that my speech started to slur and my friends who had known me started thinking that I had started drinking heavily even in the mornings. Then one day when I was running my left leg felt heavier. Then I knew that something was wrong. It took a lot of time and trial and error to be iagnosed with ALS in 2000. I have stopped working from 2000. My condition is slowly deteriorating. Now there are hardly a few people who can comprehend what I am saying.
My friends and drinking buddies have all stopped contacting me. I feel misrable when I open my mail box and see that people have not even cared to reply. A very few people answer my querries when I mail them but they have stopped contacting me.
I guess that I am no longer the FUN GUY I was then.
My family is very supportive of me. I stay with my mother and she cares for me. I have a paid help who is available for the whole day. My wife works and so cannot stay with me. My son is studying.
I don't know how to cope with feeling neglected by people who I believed were close friends. I don't expect them to visit me or call me. But I did expect them to at least reply to my mmails. Now I have gradually learnt to scale down the expectations from others.
I wonder what the experience of the others with ALS is in Canada.
If you can cheer me please write a few words of support for me. Tell me how the others have been coping with similar attitudes in people.
But I have to admit that a few others have been very supportive and cared to reply to me. They call me and talk to me though they cannot understand what I am saying.
Life goes on.
My English may sound different but that is how it is spoken and written here.

 

[CindyM]

Hi bob. Welcome to the fourm. Sorry to hear about your progression. We've had other members from other countries - one just last week also from India. So it is good that you found us. You joined on a weekend when people are talking about feeling isloated from their friends. Good timing on your part! Jump in at any time and feel free to raise any topic. We have hundreds members, all willing to share. regards, Cindy

 

[Jamiet]

Bob,

You will find many people here that share the same problems you do, not only ALS, but the "neglect". many people, just don't know what to tell you and how to help you. Also, many people's lives are so busy, they don't have time....? I guess, they really don't know what it is to be stricken with such a disease.

Were here for you, we know exactly what you are going thru, however, i've had the opportunity to visit the world, and hope that you can get the care you need there.

I've spoken with alot of Indian people and various nationalities, so use the english how you need, nobody will pick on you....only pick a joke. Indian people are some of the nicest and best people i've ever had the pleasure of working with.

Ask any questions, post when your having a bad day or if you just want to fuss or make a joke....we're easy.

Take care and have a good day...

Your not alone and don't let this be your last post.

Regards,

Jamie

 

[BWk]

Welcome Bob, You have had this disease for awhile I see. People can't deal with death I think and that is one reason they will avoid people with serious illnesses and they are busy with their own lives also [but it seems like they could take a few minutes for an e-mail once in awhile] my own kids hardly ever e-mail me. People are just people my mom says [and I live with my mother also who will be '84' in june]. You can talk to us anytime and will get back to you in a timely matter. Barry [USA]

 

[Paty]

Welcome To Our Great Family Bob

BOB I AM SURE YOU WILL MAKE WONDERFUL FRIENDS HERE, I AM FROM MEXICO AND MY HUSBAND'S CAREGIVER.

AND LIKE YOU JORGE ONLY GETS VISITS FROM TWO OF HIS CHILDHOOD FRIENDS, OTHERS WHO HE THOUGHT WERE HIS "FRIENDS" have not even given a phone call although they know he is sick with this terrible sickness.

WELCOME TO OUR GROUP, WE HAVE WONDERFUL MODERATORS AND EVERYONE HERE IS VERY HELPFUL AND WILLING TO HEAR WHAT WE WANT TO VENT.

SINCERELY,

PATY
HUSBAND'S CAREGIVER DX 10/17/005
BAJA CALIFORNIA, MEXICO

 

[Omar]

Hey Bob,

I am really sad for what happened to you, but it seems that lots of people simply don't know how to cope with such a thing, I remember that I was also ignored by my teachers and classmates wich forced me to quit my class. They have even ignored my emails. But on the other hand, other friends, my family and of course this forum is a big support for me.
So keep on hoping.

Omar

 

[alspatient]

Please do not give up easily. People tell me that I am a person with a strong will power. I was talking with my sister and telling her that the doctor had given me a couple of years when they said I was afflicted with cerebellar degeneration and later another neuro told me that it was shy dragger syndrome.
She felt scared as I told her that I listened to him award a death penalty for no crimes committed by me. She believed me because she knows me well that I was not afraid of death. Actually I am not scared of death. It is actually living that scares me. But like every one else, I want to see my son finish college and get settled well. I should tell you now about my son. He has finished engineering and is doing his MBA and has an year more. He scored a fantastic score in GRE. His scores were 800 on 800 in quantitative and 780 on 800 in verbal. But he decided to do an MBA in India itself.
I did what no patient would do when he has been diagnosed with a terminal illness. I bought a small farm and I am grew corn and Now I am growing sunflower. I produce more food than what my wife, son and me consume, I tell my son. We are a calories surplus family I joke. I will try to post some pictures of the farm sometimes.
Last Feb my father passed away. He was 84. The cause of his death was my illness. He just could not see me in the state that I am. In India there is a cermony on the 11th day after a person dies when he is supposed to enter heaven. The mourning period is over and there is a feast. I chose to do it in a different way. My wife selected an old age home which houses old and helpless people. I spent the money which I would have spent on the feast on feeding the old people. I knew that I cannot do more than that. This february on the first anniversary of my father's death, I gave money for two meals for the inmates of an orphanage run by some good people. I sent my cousin to see the place and he came back and told me that it was a worthy charity. It may come as a surprise to you all that charity doesn't cost a lot here.
I have gone through the posts here in this forum. Most of it concerns the disease that we all suffer from. One message that sounded different was the post by Quadbliss that he is a grandpa. He sounded so happy. I could imagine he smiling as he clicked the "Submit Reply" button below the message box.
We have a disease that will not go away. We are not likely to see a medicine that will make us get better. But we can try to be happy. We all have had good times behind us. Comeon guys. Look back at the good times and share the good things also besides our anxieties and fears. Let us not talk only about the bad things that is in store for us. It made me feel happy that he is happy that he became a grandpa. Lot of people have the families intact and the caregivers are the best things that can happen to us.
I am sorry if this forum is intended merely as a discussion place for the disease. If it is so then I will stop here.
Try to smile. I know it is difficult to smile. But no one died of trying to be happy.
So let us hear from the members if there is good news from someone in the family. Do I talk a lot for a new member?

 

[edna may]

ALSPatien

Hi bob. Welcome to the fourm. Sorry to hear about your progression. We've had other members from other countries - one just last week also from India. So it is good that you found us. You joined on a weekend when people are talking about feeling isloated from their friends. Good timing on your part! Jump in at any time and feel free to raise any topic. We have hundreds members, all willing to share. regards, Cindy

Hi there ALS patient, Welcome, I am English living in California. I hear what you are saying. I too was very active, with golf, walking & Gym Etc. Every one thought I was many years younger, (78 when I started with symptoms) Like you different Dx from Different Drs. Bulbar onset. I think friends got tired of trying to understand me, but two out of all the others have stuck it out, send me cute cards & silly gifts. The others that have abandoned me, I understand & think of them as my silent friends. I have many great memories of those silent ones & that will always be so. Count your blessings & make some new friends here, May I be one of them? All the best. EM

 

[Al]

Hi Bob. Welcome.
AL.

 

[Jamiet]

bob,

waz up....

I love talking to Indian's, you are always so courteous and giving. You are a wonderful person. I have worked with Indian's all around the world, from Russia, Dubai, UK, Turkey, Iraq, Afhainastan and more i cant remember now, and i just love you guys.

Your post are too short, i read it in just a few mintues, so post all you want...we'll listen...

Have a great day and talk to you later buddy

rgds,

jamie

 

[alspatient]

Hi Jamiet,
I went through your profile. Do you still work as CPA/ CFO? I was a banker for 25 years and credit was my speciality. You would be surprised that we read mostly American authors to learn about Corporate Finance.
I am glad that you think that we are good people. I have so many relatives in USA. I was at a seminar in Shanghai. The guy next to me was an American from Texas Instruments. We sat next to each other throughout the seminar. I gave him a list of my relatives in USA. His answer was very funny. He said that he doesn't have so many relatives in USA.
I guess that you worked in the countries listed by you. I don't know if you still work. I don't know if I can ask you about that.
I still manage a small farm and I am growing subflower there. The last crop was corn as I had posted. It keeps me from not losing my sanity. It also keeps a few people gainfully employed.
The daily report from the guy who manages it is something to look forward to at eight each evening. If I didn't do something I would have to think of the illness and wallow in self pity.
My typing is slow and so I can't type as fast as I could when I did not have ALS. I don't know if I cry too much when I post sadly complaining about the neglect. I guess that you guys would understand how I feel and lend me your cyber shoulder to cry on.
Have a nice day.

I guess I don't have to edit the posts. I don't sound liike I am sad all the time, Do I? Well there are times when I get into depressions, especially when I look at the old Photographs or when I open my mail box and see only spam.

 

[Frizzel]

My four legged old man made me smile.

Just came in from brushing my 13 year old Chesapeke Bay Retriever. He used to pull me on my bike, stablize me when I would fall and walk slowly beside me when I would get outside. Now he's getting to be an old man. I just spent some time with him as I thought of stories of what we went through together these last 13 years. He is this huge headed 114 pound brindle gentle giant. He actually knows how to smile if we ask if he's happy. Yesterday a friend was helping us around the house and he needed some paper towels. The old guy put the roll of paper towels in his mouth and with a little giddey up in his step took them outside to our friend. Those are times that make me smile.

 

[vmd]

Bob:

In this forum, you are guaranteed many cyber shoulders to cry on, as well as many cyber ears to listen.

 

[liz]

Sweet story, Frizzel. It's all about taking the days as they come.

Liz