Just beginning our ALS journey

[Jlynn]

Hi, my brother was officially diagnosed with ALS on December 29, 2015. It rocked our world. He is 45 years old, a single dad with two young children. He will begin the ALS clinic the first week of April. I personally look forward to that as any direction and guidance is greatly appreciated. This website has been a wealth of information and I'm so appreciative to have access to it. Thank you all.

 

[chally]

Hey jlynn , welcome to the forum! Sorry about your brother , this is a great place to get support and info on this nightmare so post often and ask questions. Chally

 

[Jlynn]

Thank you so much. I'd appreciate any input.

 

[lgelb]

I'm sorry to welcome you to our ranks, J. Obviously your brother and the kids will need a wealth of support from your family, and it's good to hear that he evidently has a caring group of people to provide it. Anything you care to share about his circumstances, symptoms, progression will help us provide better-focused thoughts along the way.

Best,
Laurie

 

[affected]

Welcome Jlynn.

You might also recommend your brother and/or his wife join up here as they get over this initial shock of the diagnosis so we can offer support to them.

I'm glad you have found us

 

[Nuts]

Jlynn, I'm so sorry to have to welcome you here, but this is a great place to get information and support. Please do encourage your brother to join also. Most of what I know about living with ALS I learned here. My favorite tip from my all time favorite thread--always have a bucket handing while using the lift. Sorry--it may be early for potty humor, but I encourage you to read old threads as well as current ones to find even more information.

Becky

 

[Jlynn]

Any humor at all in this situation is appreciated�� He and I are taking a 6 day trip to visit our elderly grandmother. We both realize how taxing this will be. He finally admitted he may need a wheel chair at the airports after having a time at the grocery store. He had exhausted himself just shopping. He is a very independent and will not ask for help. He lives alone (for now) and has his two young boys quite a bit. His left hand is atrophied and his left leg is smaller and weaker than the right. Speech is slightly different when he's tired. He moved back home after he was unable to continue working. Now he is trying to get used to not working and gets bored when he doesn't have his boys. They are his life. I have been coming to this site for about a month just reading. I may have never signed up if the website didn't make me so I could view the comments. To sign up felt like finality. It really is real, isn't it?

 

[DreamsEnd]

JLynn,
Yes, it's really real. I'm so sorry this is happening to a very young man. He's so lucky to have you supporting him.
I'm glad you're reading a lot on this forum. At first I would read and read, then I'd have to stop. Then I'd go back and read in the middle of the night.
No one knows how quickly your brother will progress but I do urge you both to plan ahead, stay ahead of his needs because you'll never know when he'll need different/more assistance.

Sherry

 

[Jlynn]

Thank you Sherry. I think my brother is just getting to the point of not wanting but having to give in to certain things. Examples are a shower chair, the wheel chair at the airport. It's all so exhausting for him. He hugged his twelve year old and felt like he could topple over. I too have read and read anything I can get my hands on. It's all pretty new and seems to consume my thoughts the majority of the time. Always thinking about his safety and getting him whatever he needs to make his life easier. Trying to keep things positive. Wishing things were different for him. Planning ahead seems to big the one big tip being passed along. I look forward to his first clinic as tough as it may be for him. At least then I'll know we are on the right track.

 

[MyNexus2U]

Hi Jlynn.
I am so sorry that you have had to join our ranks. I was diagnosed back in December as well. I have had symptoms for about two and half to three years and progression was slow at first but has sped up. Your brother sounds a little like me as in he wants to stay as independent and not be a bother to anyone and keep doing everything as normal. I understand this all to well. I was hesitant to join as well but things started happening faster than we knew how to prepare for them. Is your brother a veteran? If he is there is a ton benefits and grants available. Go to the veteran's thread and read the stickys. It is very important not to wait to get a wheel chair and anything else that you think you may need before you need it. We waited to long to get a wheel chair and I fell late at night of course and seriously hurt my leg. We had no chair, no ramps, and no plan of action to get me down the tall steps and into the car for a trip to the emergency room. We managed but with difficulty. I had no broken bones fortunately but I tore a hamstring badly and it took several weeks to heal. I spent two weeks in the wheel chair until I healed enough to resume using a cane. I am now almost fully reliant on my wheel chair except for very short distances. Work with your physical therapist closely and get bathroom and shower facilities modified as needed. Naturally I discovered the bathroom thing in the middle of the night and finally managed to get up after an hour of trying. I guess it is a man thing! I am very fortunate that we have a very large six bedroom farmhouse that we live in and my son and wife and children moved in with us after he lost his job in December as well. They were renting it was a win, win situation for everyone involved. His wife works and now he is a stay at home dad with his young daughters ages three and four. It is especially good for me as I get to spend all the time with my granddaughters. If your brother is not in a support group try to encourage him to do so, either online or in person. I am only online as of now but soon to join one locally. I have found that support groups are a wealth of knowledge and other help as well, as I said we are playing catch up. I am very new to all of this to and yes it becomes very real and very fast or at least is did for us. Keep us posted and stay in touch. Ask anything and I am sure someone will be able to answer your questions or at least send you somewhere to find out.

Bryan