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jennifer79

Member
Joined
Feb 23, 2013
Messages
27
Reason
Loved one DX
Diagnosis
02/2013
Country
US
State
ga
City
savannah
Hi my name is jennifer and my 56 year old dad was diagnosed yesterday at the Mayo Clinic with ALS. He is truly the most amazing man i have every known and my best friend. I just wanted to know if anyone had any advice on where to even start. I am trying to wrap my head around it right now. I just need to know what groups there are and basically what i can do for him right now.

Jenn
 
Look for a local als association or clinic. They have support groups, information and loan closets to help with equipment. You are in the right place here. Lots of wonderful people you can ask questions and get support from. We welcome you and wish you peace.
 
Welcome Jenn. Sorry you have reason to find us.

I'm sure the wheels in your head are spinning at great speeds. We were in shock fog for about 6 weeks. Once it dissipates, you will then be able to plan with a clearer and calmer mind. For now, just be there for him and make sure you have people there for you too. If your dad is a veteran, he will qualify for assistance. It's important to get the paperwork done ASAP with respect to financial issues.

Next, you can get great support from the ALS Society and the clinic which your dad will attend on a regular basis.

Then, you can read various threads, at your own pace. Knowledge is power, and the information here is the most comprehensive anywhere. Just remember, you don't have to know everything right away. Taking it in, in little bites, worked for me.

Ensure you take care if your own self. That is vital.
Please know there is life after diagnosis.
Please know you are not alone.
 
Hi Jennifer,

So sorry about your dad. The first thing I did upon my diagnosis is go to Homepage - ALS Association. There you can go to the bottom of the page and find a clinic in your area. I see in Augusta there is a Certified ALS center for excellence, and in Atlanta there is an ALS Clinic. I hope one of these is fairly close to you. Contact them to set up an appointment for your dad. Usually we go once every three months. He will see a neurologist, occupational therapists, breathing and speech thereapist, as needed, all in one appointment. There is much help on the alsa site. This forum seems to be full of all kinds of helpful information, too, emotional and good concrete advise.

Take some time to breathe, to grieve, to love one another, and then take it day by day. What are his symptoms? Encourage him to come on to this site also, as he will find it helpful.

Take care.

Jacquie
 
Thanks so much. I think i need to slow down and just take it in like you said because i have not quit reading since last night. I have already order things they he may not even need. We are using the Mayo Clinic in Jacksonville Fl and they were wonderful there.
 
I heard the Mayo is great. It must be, my neuro here in Canada trained there... and he's the kindest and most compassionate doctor I have ever met. Jenn, he told me that most people are very sympathetic when it comes to ALS. He's not wrong.

I have met angels every single day. They are disguised as people, but angels none the less. They are my silver linings.

You are a great daughter. Take it slow. I remind my family and friends that I don't want to be sick faster than I have to. Sometimes family hover just a little too much. It's out if love if course, but sometimes we PALS really do just want to talk about the weather! Ha! We think about ALS every single day, and night, so doing things we really want to do, be it travel, hobbies or whatever, really helps re-focus our attention to the business of living. Joyful living.
 
Elaine

Thank you. You sound like my dad. He was only diagnosed yesterday, we have known for a couple months this is what they thought it was. This Morning i went to my parents house @ 8:00 am and took them breakfast. He is such a jokester and he told me we couldn't start this only after 12 hours :). If you don't mind me asking is there anything that you know of that would make his life easier at home. He is only having problems now with his left leg and walking. Thanks for any insight you can give me.
 
Jennifer,
I too started with my left leg. What helped me a great deal was an AFO, or ankle-foot orthotic. It keeps your foot at right angle to your ankle to correct foot drop, if that is what he has. It kept me from tripping. Then I started using a cane. Eventually when my right foot developed foot drop also, and I got an AFO for it, I purchased a 4-wheeled walker with a seat, and brakes. It has been great as I can sit when I get tired, I can put things on it to transport them, and have stability walking. Just now I have switched to a manual wheelchair so that I can get around safely. Hope this helps. Go to the ALS association website to find your local clinic, unless he is going to continue at Mayo.

Best wishes,
Jacquie
 
Good on you to bring breakfast... And I love your Dad's reaction!

I'm left side affected too. Started in my hand. I'm coming on to one year post diagnosis and still walking and mostly independent. We are moving, because we have stairs... So if he has stairs, he may have to move too. Or get a chair lift. Many people think these are a waste of time and money because a PAL may not be able to use such a lift for a long time, due to corp weakness. It's not too soon to think about housing options or changes to the home to ensure safety. These require planning and are not instant fixes, so I'd suggest you discuss this with your parents, sooner rather than later. The real estate market sucks and renovations can be extensive and expensive, so I'd start there. (After financial planning is done).

Suggest you get him a cane to avoid falls. Falls are the worse! I am getting an ankle/foot brace on Monday. It's called an AFO, and I hope it keeps me mobile as long as possible. That being said, no two PALS progress at the same rate or manner. It is truly unique to each individual, so it's best not to compare one's ability to another's.

When are you going to clinic? The team concept is fabulous, and it's helpful if you go too. If he wants you to. You will meet all if the wonderful folks to help all of you.

Personally, I find fatigue the most irritating symptom (that and putting on a bra!), but since last April I've been to Europe twice, Las Vegas twice, Florida once and I'm traveling to Reno next month and France in April. I still drive. I still shop, but now need help to lift bags. I still do most household chores and enjoy an active social life. I know I could likely still work part time, but I'd rather not and I'm fortunate my husband holds down the fort in that regard.

So you see? There's plenty of living. We just tend to do things sooner then planned.
 
I sent you reply, but it's being reviewed by the moderator... Please stand by Jenn.
 
You might read thru my thread here in this section for a lot of helpful advice on SSDI and getting help from the ALS Society.Your dad sounds like a great guy and he is fortunate to have you to help him thru this journey.
 
jennifer79, I should called myself pumpie79.
So sorry to hear about your father, my father is also 56 and we found out about him on monday. At the moment, its all a fog but I hope we gain clarity as it goes on. Docs in the UK dont like to say 'ITs ALS'. they insteasd say 'We think its ALS'.
I hope you get all the support you need. Good luck with your journey, being a great daughter will help both you and him.
 
Hi Jennifer-

Wow. We are in similar situations. My mom was diagnosed last Monday. I also lived in Augusta for two years so there's another sorta similarity. :) It sounds like we have the same personality in that we have to "do." I freaked out and pretty much spent all last week reading the older posts on this forum and honing my Google 101 medical degree like it was my job. My cousin's wife is a neurologist, so bless her heart, she got grilled as well! My mom and dad are taking it in stride, and since being diagnosed, my mom actually seems in better spirits than I've seen her in a long time. We've had a LONG road getting to a diagnosis and being sorta dismissed as it's just her age (she'll be 71 in April). I totally think the hovering wears on our PALS. Today she sounded like her old self when I called and said "I'm kind of glad your dad went into town... he hovers around me like a stray animal. But I already feed him and give him a place to live so I'm not sure what he wants." Ha! She did kind of make me sad because she said "well, it's 3-5 years normally and that's all I really want. I feel good. I'm just tired. So tired." :( Like was said by others, she says the fatigue is the worst. But she also has bulbar onset (swallowing/speech issues, not so much limb involvement). So I think the choking thing is getting old. And she has to exert so much energy just to speak and I think she gets tired of talking... literally.

As to what to do? I've decided to stop being a basketcase and let go of my anger. And to allow myself to grieve. It was funny how once again, it didn't fail that when I went to church (don't always go), the message was spot on. It was about bitterness and how we become bitter because we don't know how to grieve. One of my dear friends lost her dad about this time last year, and our mutual friend who I am also very close to lost her step-mom on Tuesday. None of this is ALS related, and we were on a three way call mainly to console the friend who just lost her mom. But I kind of feel like in a way, we've been handed a death sentence for our parent. I am taking her advice- she said to make sure I took time to just sit with my thoughts and let them come and go. I must have sat in my garden for 2 hours early Thursday morning, watching the sunrise, letting my emotions come in waves; feeling them, holding them, then letting them go. It was the most extraordinary experience. And I'm really grateful to her for giving me that.

Now I have to let.them.go. Stop asking why her? Why MY mom? This is our new reality. So I won't be bitter. I may not be able to stop this evil disease from taking her from us one nerve at a time, but I can stop this disease from stealing the joy from our remaining time. Be that 6 months or 6 years. I'm taking more pictures, I am more patient with my own young girls, I am more appreciative of my husband and my health, I am making plans to LIVE and enjoy my life and not take for granted anyone I love.
 
Jamie

We do have a lot in common. I sure hope i can get to the point that you are are at very soon. I am very angry like you said and bitter. I keep asking that question why my daddy. I have told my children yet because i feel like i have to process it first and to be honest. I know they are going to be devasted, because they are with him every afternoon after school and if you ask them who there bestfriend is they will say their papa. I definetly feel like it is a death sentence and i feel so cheated. My dad did tell me this morning that we had to live everyday to the fullest and i am trying to get there but it has only been 3 days. Thanks for taking the time to respond to me, you really did make me open my eyes to where i need to be
 
Jennifer, try to think of it, if you can, not as a death sentence, but as an abbreviated life sentence.
I bet that's how your dad is viewing it.
He sounds like an awesome guy, and I'm betting the apple did not fall far from the tree.
 
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