Diagnosed

[panguinjen]

Hi Linda,
Welcome and I'm sorry you're here! Ask for what you need, we'll help if we can! My husband was diagnosed last Aug. I still have days when I can't believe this is real!

Jen

 

[Jennifer D]

Hi Linda,
Sorry to hear about your husbands diagnosis, but you definitely came to the right place! This forum is amazing, ask any question and someone will be able to help. I still wake up some mornings and think that none of this is real (my husband was diagnosed in March 2012).
I will keep you and your family in my thoughts and prayers!
Jennifer

 

[Larry Hinds]

You have received quite a bit of good info. I am a caregiver for my son and would like to give you some help for the future. You may want to start recording his voice to see if it can be implanted into a communication device. My son is using the Forbes eyegaze computor which is working well it would be so much nicer if it was his voice not a computer voice. Get as much equipment that you can ahead of time because when you need it you will not have time to get it or have time to learn how to use it. There is a lot out there to help.

 

[minnesota]

Hi Linda,
Welcome. You've found the right place. We will support you the best we can. Those initial days/months can be overwhelming with so much paperwork and just getting your bearings. It can feel like the rug keeps on shifting. We're hear for you. An ankle-foot-orthotic sounds like it might really help your husband and if he has trouble walking distances the als clinic will guide you in the best mode of transportation. We have been able to use a scooter (so just an idea as another option) to help my hubby get around. You're doing a great job already asking, searching and reaching out.

 

[Floyd Parton]

Welcome.....I just got diagnosed too.......24 May.........we will learn as we journey down this road.......we will keep you and yours in our prayers......cheers......fp

 

[vzandt]

Welcome Linda
my only advice would be laugh as much as you can, cry when you need to. make as memories as possible. we will be here if you need us.

 

[Anja]

Hi Linda, warm welcome from me and am sorry you need ti be here, take care!

 

[KissJ]

Linda, Welcome! You have come to a wonderful place for support. Is your husband a vet? I can give you a great deal of advice if he is as ALS persons in the military are "service connected" and there is a great deal of financial support and services. My husband was diagnosed a year ago May 20th and had a second opinion June 16th last year. The doctors feel he has had ALS at least a year prior to the diagnosis in 2011
Both of us are on anti-depressants. I honestly don't know how we would do this without them! We are taking a cruise this summer. My advice is to go on a special get away before more progression comes along. I wish so much we would have booked a cruise last year when we got the news. He is hardly able to walk now and last year he was using a cane only. God Bless you both! I am here if you need to talk, vent, get advice, pray... My name is Jeanne

 

[PATH]

My husband was just diagnosed in April of this year. Still doesn't seem real. We try to stay positive and pray alot. I don't have much advice so I come here as much as I can to listen to those who can help with the questions that seem to come up almost everyday. We have you and your family in our prayers and hope to see you here again.

 

[Okie2]

Sorry you find yourself here but welcome. Stop every now and then and just take a breath. It can be overwhelming much of the time. By all means do what he can do now, and enjoy everyday. Check into getting braces for walking, called AFO. They can help so much and make it safer to get around for awhile.. Falls are not good for PALS. Take care of yourself also, you can't do it all without some time for yourself to relax. Good luck to both of you and God bless.

 

[charkayr]

Hello, my name is Charlene and am 62 yrs old..In was diagnosed 10/10/11....symptoms were way before diagnosis...I had to put in a chair lift (5/2011)because we have stairs to bedrooms up. I fought this transistion but have to say I am glad I did it because it gives me the freedom to go to another level of my home safely. I have a wheelchair at the top of the stairs that I transition to so I can navigate to the rooms upstairs.
I had tpo give up driving..I cannot walk anymore and I use a transfer board to go from seat to seat or to get into car. I take a wheelchair everywhere I go. Recently my right hand is losing strength and it is difficult to use at times, not all the times, but the changes are happening. Because this disease is different for each and every person involved. I also am not sure when another turn will come. I suggest strongly to find an ALS Chapter in your area..these people are a God send.
My sadness is for my family 6 children and 9 grandchildren and especially my husband...you being your husbands caregiver, you will be the most important person in his life..I pray for him and especially you, because you will have to be stronger than he is..this disease is a very emotional time for the patient and family because no matter what we do nothing can take it away. I pray continually for all the people and their families who have to go through this experience.
Contact your ALS Chapter they have meetings for you as a caregiver and meetings for your husband..they advise and lead you to whatever it is you need...God Bless Charlene

 

[bhyatt32]

Linda,
Welcome to the Forum. I'm only a month into my diagnosis (I'm 49), and almost any question you have can be answered here. Personally I've found great comfort talking with people who have first hand experience. I started with drop foot last year, had spine surgery, no help. Walked with a cane, graduated to crutches, now I'm walking with a walker. I haven't fallen since the walker. Please tell your husband that he has age and lower limb beginning working for him.
We're here for both of you.

Bob

 

[BeckyW]

Linda welcome to our forum family. We will laugh and cry, rant and rave and pray with you.

 

[HelenL]

Welcome to our forum Linda and Charlene...

I still use my scooter to zip around, though now I do have a pwc I'm trying to get used to that... Just remember not to overdo it with the walker... if your arms are hurting too much from holding on, you may need to switch to a scooter or wheelchair. I was warned of that when I first came here, some of the members really hurt themselves from not realizing that it was time to move onto a new set of aids.

Also wanted to mention that maybe your PALS should join this site so they can get help here as well.