new guy here

[Irish7]

Hi there, I'm new at this, and I've been reading the threads on here......great support group of people. I'm here because of A.L.S. Seen the neurologist 4 times...gone for all the emgs,mri's, nose and throat specialist. So far, negative , except for spurs on spine, but neuro says I've been progressing fast since last December.........go to see Dr. Strong next month......I can't walk right, very difficult to swallow, talk, eat, drink, take medication, water keeps shooting out the side of mouth....and much more other things wrong......neuro says this is bulbar, also loss of balance, HEY! one time I sneezed and went flying on my butt...all 6ft and 210 pounds ..one of many times I must say. Thank God for painkillers......Anyway it was driving me nuts......I have been so angry , off and on.....emotions going out of control.....would not get out of bed at times.....but after seeing the neuro with my wife yesterday, just updating my condition, I gave him my disability papers and left quietly.....Knowing very well to just get on with my life the best that I can.........I hope and pray that one day that this disease will be beaten into the ground.........c'mon 130 yrs.....

 

[Pearl]

I just wanted to say "hello" - you must be very frustrated. I'm so sorry this has happened to you.

I think you will find support here.

 

[paula B]

Hi irish7

Hi irish
Well i just wanted to write and let ya know that i understand where your comming from. I to have als and have felt the things you are feeling and it does get better. So remember to come back here and i hope we can all help ya with this.

Paula

 

[sharonm25]

New also

I am also new to the forum. My mother, age 73 was diagnosed in July with ALS. In March of this year she began to have problems walking and began going to the doctor to find out why. After a week in the hospital she was referred to the Mayo Clinic where after everything else was ruled out, she was diagnosed with ALS. On top of that she fell in June and broke her right wrist not to mention she developed an infection in her stomach lining due to some mesh from hernia repair 23 years ago. The disease seems to be progressing quite rapidly as she is now unable to walk at all, her right hand is useless even though the bones have mended from the break and the doctors say it is because of the disease. Although the neurologist said he did not detect any bulbar symptoms, her voice is hoarse and her speech is very slow. She also complains about a lot of pain in her feet, legs, and right hand. We live in Gainesville, Florida and the nearest ALS clinic is the Mayo Clinic in Jacksonville, FL about a 2 hour drive. It is impossible for her to make this trip so we have to rely on local health care professionals for care. Just last week both her and my dad were in the hospital. She developed a blood clot in addition to her other problems. I live about 25 miles from my parents and I go to their home daily to help out although I also have severe bone on bone arthritis in my knee and need a knee replacement. I have read everything I can get my hands on about ALS and all of it suggests that a health care team is necessary for this type of disease but I feel that being so far away from the Mayo Clinic limits our options. She is very depressed and wants to know what is going happen her next and I just cannot seem to find the answers for her. I happened across this forum when I was looking for information and thought I would join for some much needed information from others who are going through the same thing. I would appreciate any feedback that anyone has to offer.
Thank you,
Sharon

 

[Al]

Hi Sharon. Sorry to hear about your mom. Have you tried calling the Tallahassee MDA Office? The number is 850-681-6763. I think that is closer to you that Jacksonville isn't it? If you call them they might be able to steer you in the right direction. Have you registered with the ALS Association? They are in Tampa at 888-257-1717. They might be able to give advice as well. Hope this helps. AL.

 

[Al]

Hi Irish7. Welcome to our forum. I know how you feel. It's not much fun but as you say just get on with it and do the best you can. We all have our crappy days where we don't want to get out of bed. Hopefully as time goes on those days become few and far between. Trying to keep a positive attitude helps and I know full well that that can be difficult but it is important to try. Hope tomorrow is a better day. AL.

 

[sharonm25]

I have registered with the AlSA and they have been somewhat helpful in that they loaned us a power wheelchair and got us a shower transfer bench. However, the care coordinator is new and serves a very large area in Florida. Tallahassee is about the same distance as Jacksonville. The Mayo Clinic in Jacksonville steered us to the ALSA. I appreciate the information about the MDA office in Tallahassee and will give them a call.

Thank you,
Sharon

 

[Irish7]

supplements

Hi there again........and thank u for the kind thoughts.........have a question. I would like to know what kind of supplements that I could take.....neuro said to eat mushy kind of food for now, shepherd pie, pastas, soft foods, puddings and such , but what about protein........would a protein drink help? Anything to stop me from choking on my food, but also to keep up the weight and energy..........and once again I would like to say thank u........

 

[Al]

Morning irish7. I have heard people recommend Boost and Ensure but I'm not sure what the protein content of them is. You could probably find it online. AL.

 

[MtPockets]

welcome to the forum

I'm glad you found the forum Irish and Sharon. I'm sorry you are having to go through this, but at least here you are not alone. If there are some questions you have you might want to try the search link above and just type in what you need answers for and maybe you'll find it.

You can always come back here though and feel free to jump in with any questions or thoughts. Just remember You are not alone, we are all facing this together.

GOd Bless
Big AL

 

[CindyM]

Good evening all. I am new to the forum and still awaiting DX but 2 docs have said they fear I have ALS and one is doing tests for MS. So I've reviewed forums for both and I am not sure why but you guys make me feel at home. Probably because when anyone talks about symptoms I feel some sort of kinship. But mostly I like the good attitudes everyone seems determined to put forth.

I already know what you mean about feeing down sometimes. I have been losing muscles and muscle strength for a year now. Some days I cry all day when it dawns on me that it has been over a year since I have been able to paddle a canoe or hoe a garden. But I am still working and it helps to get out of my bed and out of my head.

I liked reading about the man who walks his puppy via a scooter. I was always a task-oriented person but now realize I am going to need contact with other people when I can no longer work. And I suddenly know what I must do! Since I am not strong enough to work in the yard I must meet my neighbors! And in my neighborhood, this means I need to learn Portuguese. I will get to meet some of the elderly Portuguese men and ladies and have them teach me a few words.

Thanks to you all for being a source of inspiration. By the way, I had a brain MRI on Friday to look for MS. If they found something I will go to a different forum. But I have chatted with a few people who suffer from MS and their experiences seem foreign to mine. Time will tell.

 

[Al]

Good luck Cindy. Hope it is neither. Welcome and feel free to ask any questions you may have. AL.

 

[MtPockets]

Best of luck Cindy

I hope the test come back with a good report. And I hope you feel at home here you are among some of the nicest people I have ever not met. haha...

God Bless
Big AL