Status
Not open for further replies.

Lory

Member
Joined
Aug 27, 2013
Messages
13
Reason
Loved one DX
Country
US
State
MD
City
Baltimore
My dad was diagnosed with als about one year ago, he is 67. His first symptoms were hand weakness and trouble with fine motor things like buttoning. His doctor at the als clinic said he was diagnosed on the early side, which I guess is a good thing?

The biggest question my dad has had since the diagnosis is about progression, and we haven't gotten any answers. I guess I understand why the doctors don't want to make a predication, but is there really no rhyme or reason to how fast or slow this disease goes? :-(

If anyone can tell me their personal experience as a PAL or CAL in terms of symptoms and how they have progressed, it would really help. In one year since diagnosis, my dad has lost most of the use of his arms. He no longer drives, and my mom feeds him. He is able to hold and use an ipad mini for a bit. His voice is strong, the last FVC test he took was over 80% I think, and he walks independently. He has been feeling leg twitches for awhile though. With this info, is there anyway to judge how quickly his symptoms will progress?
 
I have already took the time & much needed effort to answer these same questions in your other thread.
 
Sorry about your dad's diagnosis.

I couldn't agree more that I would like to know about progression.

The fact is however, it is different in everyone. No one can tell you what will happen exactly, and in what kind of order or time frame. The doctors are not holding back answers.

There are so many factors including, but not limited to - type of onset, general health before ALS, inclusion or not of FTD, nutrition and fluids, general attitude to looking after oneself, falls, infections and pneumonias.

For example, my husband has bulbar onset, he was so healthy before ALS he had never even had a blood test all his life, he has FTD and as a result he has wanted to control what happens with the disease and yet has continually made poor decisions, has not taken in good nutrition or fluids and has lost weight dramatically (even after the peg) and has had many falls, 2 of them serious needing hospital admission. He gets all kinds of little infections, but so far we have avoided pneumonia amazingly. Aspiration pneumonia's often can take a PALS life very quickly even when they seemed to be doing fairly well.

My husband was only diagnosed 8 months ago and now has almost no use of hands/arms, can barely speak/swallow, has a little use of his legs with much assistance. He sleeps a lot of the time now, and lives in a withdrawn world most of the time. I can tell that he is getting CO2 buildups, his lung functions were around 55% 3 months ago, and I would guess they are now around 40-45%

He barely resembles the man he was at this same time last year, either physically or mentally/emotionally.

Others here will tell you very different stories of progression, some have been living with ALS even without a vent or peg for years.

I wish I could ease your mind. I suggest plan ahead and do everything you can while your dad can, live for each day and celebrate each day and what he has one each day.
 
Why two threads with basically same question Lori?

Fact is, without sounding harsh. in a nutshell, tomorrow isn't guaranteed for anyone. The doctors can't tell you - because they don't know. No one knows.

I realize you want to plan your wedding so to ensure your Dad is included - but no one can promise you this. Oh how we all wish we could see the future. One fall, sometimes is all it takes to speed up progression.

Make the best of each day. That's the best advice my Dad gave me.
 
Hi Lory,
You sound so extremely worried about your father. I can very much understand.
The short answer is - the progression is different for everyone. I have heard that it depend where it starts, that bulbar onset is quicker than limb onset. I don't want to give you false hope in anyway, but my husband was diagnosed with ALS in 2000 and had the weakness in his arms first. and then the twitching in his legs after a year or so. We lived a fairly normally life for quite a long time, and it took almost 7 years before he used a wheelchair consistently.

Anyway, we have 4 children, 3 are married and we now have 8 grandchildren. Our lives for 14 years have been trying to decide when to do what, or to try to do something in time for him to live, or the children were trying to decide when to have their babies so that my husband could see them.
My advice to you is the same that others have given. Live your life, making the best decisions for yourself that you can at the the time, major choices like marriage and the timing of it should be yours and your fiancés.

Congratulations and good luck to you.
 
Mine started in my right hand in 2007. Now that a power chair but still talking, breathing, and eating. I can self transfer from the chair to recliner or toilet. Haven't buttoned anything in three years. I had a probable diagnosis in in 2009 and a definitive diagnosis in 2011. I had to give up driving several months ago, but have a Honda Odyssey handicapped van that all my friends can drive. My neurologist told me upon my diagnosis that if you start slow you go longer. The progression does not seem to change. At diagnosis my FVC was 108% and now it is 86%. Limb onset appears to move more slowly.

That's my story and I hope it helps you. I know this is scary but just remember the only thing that's changed about your dad is his muscles. His heart mind and soul are still the same person. Take him along on your life trip and take it one day at a time.
Hollister
 
My husband had always been very athletic, and had a very physical job. We met in 2010 and he was the most fit 51 year old I had ever seen, and moved like a cat. The only thing was that he suffered from cramping in odd places, but I put that down to dehydration as he did strenuous work in very high temperatures, and did not take the time to rehydrate. I got him supplements, and made him jugs of electrolyte solutions to take with him, and that seemed to help. We married July/11 and started the immigration process for him to come to Canada. Jan/12 he had his first immigration physical that he passed with flying colors, with complements on his strength and fitness. Feb/12 started tripping and falling, with lots of excuses why, and back started bothering him. Mar/12 I visited him and noticed a change in his posture, slumped shoulders and starting to get a belly, inspire of the increased physicality of his job, also noticing right foot slapping when he got tired. I started him on core exercises, and work in the swimming pool to help his back, but then he visited me May/12 and I couldn't miss the 30 pound weight loss, and noticed fasciculations in his back and arms. I took him to my physiotherapist, who was stumped at the waisted muscles on one side of his back and fasciculations. I started asking about ALS, but she has never seen anybody with it and thought that it started in the throat. During that visit, we went biking and he was not able to keep up with me on a hill, got off and walked for a bit, then couldn't lift his leg to get back on the bike. While he took a nap when we got back I did research and was fairly certain that he had ALS. I sent him home to be investigated for that, but his doctor poo-pooed that and said it was benign fasciculation, and weight loss from his ++ work. 2 weeks later he was mugged at work, and his symptoms worsened, so they started neurological investigations and to make a very long story a little shorter was diagnosed with ALS. He was told he had the "good kind" as he did not have bulbar involvement. Oct/12 I moved him to Canada so that I could care for him, he was using a walker. Dec/12 flew back to Dalas to visit his kids for Christmas, using wheelchair. May/13 in motorized wheelchair, and requiring a lift and sling for transfers, still no difficulty with speech or swallowing. July/13 FVC 75% and total care, Oct/13 using neck and shoulder muscles with each breath. Nov/13 FVC 37% and PEG tube put in, arrangements made for sip & puff ventilator, but did not qualify for diagram pacer. Using NIV ventilation with mask at night, and sip & puff ventilation during the day, still has voice, and perfect swallowing. If he didn't have the ventilator I don't believe that he would be here much longer. We didn't know that you could have breathing issues if you didn't have bulbar involvement, but obviously that is not true. When he lost his core muscles he started to lose his diaphragm muscle, and one cannot breath without that.
So after saying all that you will see that He went from ++ strong Jan/12 to total to partial quad with NIV (non invasive ventilation) Jan/14. He maintains an amazing spirit, and is thankful for every day that he has. He has 4 kids, the youngest 21 & 15, and would love to see them graduate from college and high school, but just focuses on living with a bright spirit, and being an example for them.
Ask your father what he would like, his mind is good, just his body is failing.
Paulette
 
My dad went from a twitch in his bicep on 4/22 to being completely bedridden in November. Partially, this was due to a fall, but before the fall his arms had gone and was losing his legs more each day. He was 62 when he was diagnosed.

As others have said, no one knows. There is not a bigger Daddy's girl than me and it sucks not knowing the answers but just spend what you can with him. My weekends consist of shaving him, flossing his teeth (because know else does it right, lol) and feeding him. My dad wants to go and it kills me he's still here like this when he was running 3 miles a day before this. as much as I tell you not to think about it I know iTS all you can think about. If you are Christian, pray - it has helped me. Christian music helps (Praise you in this storm, I will rise, and others). I'm having a tough time at the end so I've sought therapy and it helps. Take care of you so you can take care of him.
 
Hi Lory! Your father's doctor is probably not talking about progression at this stage, because each person with ALS progresses at a different rate, depending on the disease. For the the first couple of years, my mom's sole symptom was that her right foot dropped when she walked. (This is pre-ALS diagnosis). Doctors thought it might be diabetes related, ran all kinds of neurological tests, could not find anything, and prescribed a small boot for that foot. Because she never had pain with any of her symptoms, her diagnosis didn't come until she was well into ALS. At that point, the doctors told her about 2 years. She is on year four and is now starting to have late stage issues. Take is one day at a time, this disease will only give you that. Mom had a feeding tube put in a couple of weeks ago, but is otherwise mobile. She does get incoherent at times, but DHEA helps with that. Hers progressed up her legs and she was walking a year ago. Now, she has a chair. Just keep track of what is going on and when, and make sure your Dad's doctor knows what is happening at home. Many prayers and hugs!
 
I have been living with ALS for nearly 6 years.

I use my VPAP every night. I breathe without difficulty during the day. Some nights I just don't sleep well so I take a daytime nap. I walk with braces for about 350 to 400 ft. per day in my hallway. I split it up into 3 or 4 walks total. I eat well using regular utensils and drink ordinary liquids (coffee, water, beer). It has caused me trouble speaking. I'm hoping it progresses very, very slowly. In general I feel pretty good and remain positive. I do a series of body stretches every morning and night.

There is no way at present to predict progression, but I read a scientific article saying
researchers have identified elements in the CSF (cerebralspinal fluid) that may be useful in prediction in the future. Apparently they think that some people have more or less
of a good element that offsets or neutralizes the element that feeds the progression.
Eventually, there may be a test for these biomarkers.

God bless all who have this disease.
 
Also note that progression ebbs and flows. You may get rapid progression for a short or longer period of time. Then nothing for a shorter or longer period of time. So, you can't judge even by how your progression has been thus far.
 
Status
Not open for further replies.
Back
Top