My daddy diagnosed with ALS

Status
Not open for further replies.

Jamiekay

New member
Joined
Jul 27, 2013
Messages
8
Reason
Loved one DX
Country
US
State
Washington
City
Edgewood
My hero, my daddy was diagnosed with ALS three days ago. My parents have suspected it for over a month, they were just told the news. Mom called and told my husband first while I was at work so he could be there for me when she told me.

The doctors think he has had it about a year.

I hate the statistics I have been reading.

I don't know what to do, what steps to take, who to call. I feel like we need to prepare for the future but I don't know how to deal with this news.



What should my sister and I do to start?
 
I am so sorry for your whole family. The only thing I can tell you is that I am still talking, swallowing, and walking a little bit after symptoms in 2008, presumptive diagnosis in 2009 and a definitive in 2011. Every patient is different and progresses differently. For every one of us that goes quickly someone else is a slow progresser. We are here if you need any help. We've all gotten pretty good at the tips and techniques of dealing with this disease. Never forget, that still your daddy but his muscles don't work well. His heart and soul are still the same. Muscles are highly overrated anyway:)

Hollister
 
My hero, my daddy was diagnosed with ALS three days ago. My parents have suspected it for over a month, they were just told the news. Mom called and told my husband first while I was at work so he could be there for me when she told me.

The doctors think he has had it about a year.

I hate the statistics I have been reading.

I don't know what to do, what steps to take, who to call. I feel like we need to prepare for the future but I don't know how to deal with this news.



What should my sister and I do to start?


Hi, and welcome to ALS Forums.

Although, I am deeply sorry about your Dad's diagnosis, I am glad you came across this site.
There are very good and helpful people on this board who are willing to assist you in these difficult times and to provide help and support.

Just remember, diagnosis is just one step on this "journey". By any means it's the end of it. Forget about "statistics", they are just that...numbers.
There is life still even after being diagnosed.

The secret is to take one day at a time and try to live each day to the fullest.

Another thing, you have to stay "ahead of the game" (so to speak). I say this because ALS is unpredictable. You do not know how fast or...how slow it's going to progress so you've to definitely plan ahead of time.

I do not know your Dad's status at the moment. Don't know if ALS started on his Limbs (arms, hands, legs, feet) or Bulbar region (speech, swallowing, saliva) but I would advice you getting in touch as soon as you can with your Local Chapter of the ALS Association (ALSA) and explain them your Dad's situation and diagnosis.
They will send a representative to your Dad's home to make an assessment of your Dad's needs in regards to equipment to help him with mobility such as canes, walkers, wheelchairs, bedside commode, shower chairs, Lifts, etc. They will gladly loan these materials from their Loaner Closet to your Dad to use as long as he need them.

Another thing, try not to miss any of his appointments at the ALS Clinic. They have a team of professionals who can assess the needs of your Dad in regards to Physical Therapy, Occupational Therapy, Speech Therapy, and they also can prescribe drugs to help manage sleep, pain, anxiety, excess salivation, etc.
They can also enroll him on drug trials if he is eligible.

Just try to keep his weight. He shouldn't lose any weight with this disease because it can speed up the progression.

Lastly, hug him, kiss him, tell him you love him deeply and tell him he is NOT alone, he has you by his side in the good times and in the bad ones.
And don't forget you and your sister are not alone either. You have this wonderful board filled with wonderful people always willing to help, give advice and to comfort you.


Take care.
 
Ok thank you. I'm not sure if there is an ALS clinic near him. I know there is one near me, in Kent Washington. My parents live in Bremerton, about a hour away. I'm going to visit the ALSA place on Monday.

Dad has lost 20 pounds which is hard because he is already very skinny 145 pounds before weight loss. We are trying to get him back up to his original weight. Well my mom is.

He has slurred speech and his right leg drags. His Dr. Thinks he has had it for about a year.

His next Dr. Apt is in a month, this seems like a long time in between appointments.
 
he needs to get in with an ALS clinic, the ALSA can help you and your mom find one near him. I would go visit him and go to his next appt. so you can ask questions and figure out what you need to do to help. It will be hard for your mom to care for him by herself, and he may be resistant to help( most pals are in the beginning). You can''t stop the damn disease, but you and your sister can make him more comfortable. check out his house, is it handicapped accessible? start now making changes so it is easy for him.

most important, is be there for him, give him love and your time. you just don't know how much he has. Oh, and be there for your mom too, she will have a lot on her plate and need moral support too.
 
I am so sorry to hear the news about your dad. I felt the same way when I heard the news, because my dad is my hero too. I have learned just to take it day by day and make him comfortable. The first thing we did was go to the Clinic me and my brothers go to every appointment with my mom and dad. Knowledge is the key read to make life a little easier for him. I have a notebook that I keep everything in from hygiene to medicines for him. I have learned most of the stuff on here. Me and my brothers go over to my parents everyday and do housework, make dinner anything to make life easier for my mom because she needs help as much as he does. I was lucky enough to be able to quit work last month to stay home with him because he already needs around the clock care. Like my dad tells me every morning just be thankful we have today that is more than we are promised.

Jennifer
 
Jamie,
What is in Kent is not a treatment center, but the local ALSA chapter HQ. Your dad's closest ALS center options are UW or Virginia Mason in Seattle or Dr. Greg Carter's group in Olympia. Seattle and Oly look about equidistant from Bremerton, but my guess is the drive further south is less stressful. Dr. Carter also co-directs the UW clinic, so they could actually do some of each, as I believe others have, and still have continuity of care. The ALSA may push Virginia Mason since that is their affiliate; UW is an MDA clinic. I could not recommend VMMC at this point. Since he is far from both centers, a good internist in Bremerton or nearby can consult on/write most of what he needs as well. It is more the big-ticket equipment items like a power wheelchair that will require more specialized expertise.

Since we are in Seattle, please let me know if I can be of further help.

Best,
Laurie
 
Thank you all! I went to the clinic in Kent today and I was so scared. The last few days have been an emotional rollercoaster. I am so glad I went to the ALS association in Kent today. I went in without an appointment, with my two kids and they were great. I spoke to someone immediately and the receptionist (not even sure if that was she was) hung out with my kids. The lady I spoke with helped me process my thoughts and gave me information. Honestly I haven't seen or felt hope since learning this news last Wednesday. I finally feel like its not all gloom. I even found out that they have an ALS person assigned to the south as my parents live in the Bremerton Silverdale area. My mom didn't think there was anyone near them.

They did tell me about VM in Seattle, it sounds more appealing as I can pick them up at the ferry terminal and take them to the appointment. My mom doesn't drive the freeway and Olympia although not too far is stressful to her. This is the first time hearing about it though. My parents dr told them a place in Portland. Must be affiliated with them I guess?

My parents still are unable to plan for the future but I am assuming the role of planner and prepreaction. It's helping me cope with this all.

I get to see my folks next Sunday (they don't want my sister and I to visit until then) we are going to my moms parents house. My mom told me it is ALS free zone and I can't bring it up. I find this hard as I want to talk about it. I understand that the news is early still and they are coping differently than I. I respect that.

I did seek a counselor so that I can talk to. My first apt is Wednesday. Knowing that I have dealt with depression in my teenage years I knew that I had to.

Thank you for hearing me out.
 
Jamie that is great news.

It is early days and you will have to keep that patient hat on til they reach their own place of working through the diagnosis.

Not easy, but you are taking your own proactive steps and taking the role of helping them is a great positive, and I know they will appreciate it greatly.

Counsellor is good to, well I hope you get a good one.

I'm seeing one now and he is really great. I kind of expected it could just be sessions of my crying over what happens here with my PALS between sessions, and that it might not really be that helpful at all. But its not turning out to be like that at all. He is helping me process the cacophony of 'voices' my different thoughts take as I go through all the changes and even though I've only had 3 sessions so far, I can see it is going to be helpful to me.

We CALS have to somehow find our way through this too. I'm also taking a homeopathic anti depressant which has made an enormous difference for me, it takes the 'edge' off the horror.

Stay strong, do what you need for yourself, be patient and talk to us here :D
 
My hero, my daddy was diagnosed with ALS three days ago. My parents have suspected it for over a month, they were just told the news. Mom called and told my husband first while I was at work so he could be there for me when she told me.

The doctors think he has had it about a year.

I hate the statistics I have been reading.

I don't know what to do, what steps to take, who to call. I feel like we need to prepare for the future but I don't know how to deal with this news.



What should my sister and I do to start?
Hi, I am sorry to hear about this. I just recently have gone through this. My grandfather was diagnosed with this. There a many steps to take. I can totally help guide you in all this. I want to pass on all may knowledge to you. I want to help out and all of this is so fresh in my head. It might be easier for me to do regular email. My email is [email protected]. It is no bother to me. This forum is awesome and will help out too! First things first what type of symptoms does he have? What prt of the body?

Amber


“Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.”
― Viktor E. Frankl, Man's Search for Meaning
 
JK... I volunteer for the Evergreen chapter of ALS. We are planning an Oct. conference in Bellevue on Practical Solutions. You can contact me with the email address I left on your profile page.
 
Thank you, I'm kinda "lost" right now in all of my emotions.
 
Hi Jamie,
I'm so sorry for you and I totally understand what you are going through. X My Father, my idol, my best friend was diagnosed with an aggressive type of MND in June. He has bulbar symptoms ie. Speech and swallow affected. This is such a cruel disease and your emotions will be all over the place.
Please spend as much time as possible with your father and do lots of good things together. I managed to take 2 months off work and I have found that doing lots of nice things with my Dad this summer has actually helped with the whole process of accepting what is happening to us.
I am under no illusion, we will have tough times ahead but this disease has tighted the whole family and made us realise what is important in life. You will be ok lots of big hugs x x
 
Status
Not open for further replies.
Back
Top