My Dad

[SixthKid]

I joined this forum a few months ago, "browsing" thru reading a lot of posts. Identifying with some and others not so much.

One comment recently I connected with was from trfogey, made me put things in perspective. It was "start fast, go fast, end fast" or "start slow, go slow, end slow"

My Dad was diagnosed with ALS almost 7 months ago. He started with the weakness in his left hand. Thought it was associated with something else. No such luck :sad:
Since his diagnosis his left hand/arm is useless, losing the strength in his right hand, not very stable with the walking, out of breath more than usual going up the stairs and his speech is starting to be greatly affected.
To me seems like things are moving fast with him & seeing that comment made me think "Hmmm is this fast or slow?" I don't know? I've never been introduced to this so called ALS before? Never knew anyone with it besides knowing Lou Gehrig was diagnosed with it.

I do think it's fast, I don't have "blinders" on & know eventually this evil ALS will take him away from all of us. I guess I am just wondering with everyone here on this forum if it does seem fast?

Thanks in advance :smile:

 

[cervus]

My husband started with the same symptoms about 4 years ago but was only diagnosed with ALS 08 November, 2010. His speech started to slur about 1.5 years ago. He was in a wheelchair by the end of November last year, progressed to not being able to talk intelligibly this June, to being tube fed only in July and passed away in August. He started using a BiPAP in April this year at night and during his one daytime nap. He was able to stand and pivot to transfer until May I think and then we had to use a ceiling track and portable track to move him. So for him, from diagnosis, it was rapid. BUT (as you must have heard before), everybody's rate of progression is different. So don't be perturbed at how fast my husband's progression was. It doesn't mean your dad's will be the same. I am only sharing this with you because I asked the same question after my husband was diagnosed. I think everybody wants to know but there is no definitive answer. We have two daughters who were very much involved and are hurting a lot now. It's an adventure nobody even fathoms to embark upon. If you have any questions, please do not hesitate to contact me.

 

[trfogey]

Hi, SixthKid. Sorry you have to be here.

The question that you are asking is one that everybody has and nobody wants to answer for somebody else. Why? Because nobody who has this disease or has a loved one with this disease really wants an answer to that question other than "slow". And sometimes we can't say that, so we say nothing.

I'll give you my standard answer to that question: follow your instincts and plan accordingly. Educate yourself about how the disease progresses and do your best to have necessary equipment in place and caregivers trained and comfortable with using the equipment before it becomes a necessity. One thing that often is not emphasized enough is the danger to PALS from accidents, specifically falls. It really doesn't matter much if you're fast or slow-progressing if you fall down the stairs and break your neck because your weak hand lost its grip on the handrail or your leg collapsed without warning.

Another thing to watch out for, especially if your father is beginning to have speech difficulties is the danger of food aspiration and the choking and pneumonias that can go along with that. Your father's ALS clinic should be made aware of these problems if they haven't been told already.

The hard numbers about ALS haven't really changed in twenty years: fifty percent of PALS die within 28-32 months from the documented onset of symptoms. Of the half that live longer than that, four out of five will be gone by the five year mark. Obviously, those patients will be substantially crippled before they die in most cases.

Finally, if you've done the reading here that you say you've done, you know the answer to your question. You don't need us to confirm or refute what your instincts are telling you -- or, at least, you shouldn't. We're not big on feeding denial here, so the talk gets blunt on this subject. All ALS progression is too fast -- some is simply faster than others. All ALS progression is unpredictable -- some more so than others.

If you want your father to be part of something in your life, don't wait -- do it now. If you want him to be comfortable and happy in the time he has left, set the necessary wheels in motion. Trust me, it is far better to have something early than to wait on it when it's a necessity.

Good luck to you.

 

[corbster98]

Sixthkid....

I just wanted to say "hello". I am new to the forums as well- my Dad was diagnosed late 2010 and had a confirmed 2nd diagnosis in April of this year. He told me the day after Mother's Day, as he didn't want to "ruin" my Mother's Day. Nobody can prepare you for this kind of news.
I am here if you want someone to vent to. It is hard to see my Dad losing his abilities as he has always been so independent.

Allison

 

[SixthKid]

@cervus~I'm very sorry for the loss of your husband. I pray the pain of your loss for you & your daughters it will get easier with time <3.

@trfogey~you're right I already do know most of my answers, I have read a lot on this forum & learned a lot! No "sugar coating" around here which is a good thing. I do feel my Dad's progression seems fast but I have also read about others who have progressed to a certain point and then no more progression for 5, 10 or 20 years. My little bit of hope will be the 20 years I also did read some interesting things re: head injury leading into ALS. My Dad had a very bad fall approx 2 yrs before being diagnosed. Fractured a couple vertebrae. It is an intersting theory. And as far as falling he did this the other day, outside on not so level ground. He wasn't even doing anything except standing there and lost his footing. Thank God he is all right~no injuries! Thanks for all the advice!

@corbster98~Hello sorry to hear about your Dad. It is very hard to watch someone lose all their abilities when they have always been the strong one in the family, always working on something in the garage (woodworking, mechanic, puttering etc), working around the yard. To see someone almost to the point of not being able to hold a fork~it saddens me more than words can say. The best thing I have for him these days is to spend time with him and help my mom out whenever I can. I am here for you also!

 

[corbster98]

@corbster98~Hello sorry to hear about your Dad. It is very hard to watch someone lose all their abilities when they have always been the strong one in the family, always working on something in the garage (woodworking, mechanic, puttering etc), working around the yard. To see someone almost to the point of not being able to hold a fork~it saddens me more than words can say. The best thing I have for him these days is to spend time with him and help my mom out whenever I can. I am here for you also!

I agree completely. Dad has always been a busy body and he is still trying as long as he can to be that His arms are going really fast and his hands are close to being almost useless for him at this point, but he does try. He is so strong about all of this and seems to be taking it all in with a very positive outlook. I really admire his strength and courage to face this head on.

Allison

 

[kedevlin23]

I'm really sorry that you are here. This disease stinks quite frankly and I'm still angry with it as I just lost my dad about 1.5yrs ago to it. I'm not sure I'll ever get past the angry stage, but right now - that's where I am.

I'll tell you our experience with my dad. He began having balance issues. There was a lot of falling and unexplained loss of balance. He saw many doctors - first it was Parkinson's and then other neurological diseases until we came finally rest at ALS. It took 6 months to get to that diagnosis. He was using a walker when they diagnosed him. About a month or 2 later he was fitted with his wheelchair and 4 months later he was gone. The progression of his disease - 1 year.

I think there was a lot that my Dad didn't tell us. If you watched and knew what to look for you could see the progression. He always snored, but about 3 months after diagnosis they wanted him to use a bi-pap for sleeping, he refused, but that was a sign his upper body was being impacted. He then about 3 weeks before dying had chronic vomiting and complained that his wheelchair was broken. Here it was all signs that his digestive and throat muscles were failing him. His wheelchair being broken was due to losing weakness in his hand - he couldn't push the lever hard enough to make it go.

I've heard many things about the progression of this disease. Things like if it starts in your lower body first, it's gonna be quick, etc. I don't know how much of that is really true, I think it depends on the individual experience.

One of my Dad's former colleagues and good friend was Dx'd with ALS in March and he passed away just a few weeks ago. He too lived less than one year.

There are other people though in the area where I'm from that have lived years with ALS. This link is an article on 3 individuals who have the disease and their experiences. Larry is the man who passed away a few weeks ago. I know that the people here have great insight and experience. I thought I would give another source.

ALS robs victims, but hope survives » Local News » Press-Republican

I will tell you - I live about 6.5 hours from my parents home. I WISH that I had made many more trips home during his time of getting diagnosed and the progression of his illness. I did not understand just how quickly this disease can progress. Reading the expectancies of the diagnosis - I took the sunny side. I wish I had taken my blinders off to the not so sunny side. Cherish your time now with your Dad because with this illness - you really don't know how much time there is. Capture those memories. There are lots of things I wish I had thought of before he passed so that we could have had more keepsakes of him now that he is gone. He lives in my heart and in me and I think of him everyday.

Thinking about you and your family during this difficult time.

 

[SixthKid]

I am so, soooo sorry for your loss kedevlin23.

I too get so angry now & then! Questioning why this had to happen. My parents have been thru so much (they've had to bury 2 of their children) and just hard workers trying to enjoy retirement. Sometimes I find myself thinking "Why couldn't he just have a heart attack and be done with it" I know that's awful & I bite my tongue everytime I think that but it is not fun for anyone to watch a loved one's body be taken over by an illness with absolutely no hope for a cure. UGH!

I found out he had ALS 3/1/11 the day after he found out. It started in his left hand, worked it's way around to the right side (he still has some strength on his right side) and his speech is starting to be affected. Not to mention his footing/balancing. The ounce of hope my Dad has is participating in the drug trial Ceftriaxone. He is realistic but if this trial can help lead to a cure then he's all for it!

When I read your post I just wanted to cry~again sorry for your loss!
I live about 20 mins. away from my parents so I try to get over there every weekend with more effort than I normally would

Life is too short

 

[tammyg]

You posted under "My dad" It says it all.....I feel ya. I never even knew what ALS was righter. My dad's started in his throat and worked it's way down. We were misdianosed in 06, with Meth Gravis something. Brain tell mouth wha to say and it is missing a link, then we though stroke. After all the test of ruling out ALS was the reason. I was at Camden Yards when Cal Ripkin broke Lou's record,did not know it would later have an impact on my life like this. For me it was tooooo quick the disease took over. In Dec 2008 dad had a feeding tube put in when he swore he wouldn't. I thought this is great he will put on some weight. He had machines to sleep with, cough with, and told them (the doctors) he did not need a scooter because he would be gone by then Dad was RIGHT again. June 15,2009 dad went to "The Party in the sky" where there is no ALS, no pain and probley talking everybodies ear off.It seemed like once it hits the lungs...... I wish I would have found this forum when I was going through this, I had sooo many questions that nobody could answer. My dad's girlfriend told me it was a ba$t@rd disease nobody really knows about. I really feel bad for you going through this, it is the hardest thing I ever went through in my life. I am an only child and it sucks. People here really understand, and the friends I have made are priceless. Good Luck and stay strong

 

[tammyg]

I think about my dad everyday too. It was 2 years june. Wishing I could have visited more. It was soo quick I could not even think striaght. AFter grasping at straws for a cure, you get depressed, and ask why? All the bad people in the world and this seems to hit the good ones. The ones that worked their whole lives and took care of family. Why?WHy?WHy? My dad was a cop for 42 years and was retired less 5. I know how unfair it seems, I have a broken heart here that I feel everyday. I would give anything to hear him slurr I LOVE YOU just one more time, or write me one of his notes that I have til this day. As days and months ,then years go by it gets easier, but still hurts like hell everyday. My own family don't even understand where I am coming from sometimes. At least people here do

 

[SixthKid]

Thank you tammyg~ I am sorry if you had to go thru the loss of your Dad by yourself >>>HUGS<<< to you! I pray that when it is my Dad's time that he goes peacefully & without pain. At this time he does NOT want a feeding tube or anything else. If he can't eat, chew,swallow then he is done, he doesn't want to live that way. That is his choice & I respect it. I'm kind of 50/50 on his choice ya know, I want my Dad around forever but I can understand his decision also.
My Dad has become extremely emotional lately. He fell at home (again) the other day & when we went to see him at the hospital just saying hello to him will send him into an uncontrollable crying spell. So heartbreaking to see, my Dad is not an emotional person like that at all.

I teach my kids not to use the word hate but I can honestly say I HATE this disease with a passion! It is truly evil evil EVIL! In my heart I don't think he will make it to his year "anniversary" of being diagnosed, I don't. WE can only pray

Keep your Dad's notes close to you, I'm sure you reflect on them at times and hope you find them comforting

Take care!

 

[cervus]

SixthKid. I'm so sorry you and your family are going through this awful adventure with ALS. It's OK to say HATE. I also taught our girls not to say hate, but we HATE ALS and what it did to our family. The excessive emotional bouts are most likely another symptom of ALS called Emotional Lability (EL) and is quite common. When PALS feel any type of emotion - happiness, sadness, helplessness, etc., with emotional lability they'll either start crying or laughing uncontrollably. My husband used to laugh. They offered him a low dose of an antidepressant called Prozac. Helped immensely. Ask your dad's ALS doctor to prescribe this for him. It's commonly used amongst ALS patients and really does help with the outbursts. I'm sure your dad would appreciate it as well as your family as it can be disturbing to everybody. Hope this helps with at least this aspect of the disease. Yasmin.

 

[SixthKid]

Thank you cervus for the advice! I will have my Mom look into it!

=)

 

[ReneeM]

Dear SixthKid

Life just STINKS sometimes! My husband had just a slight hand tremble in April this year and is now in a Wheel Chair - almost bent in half when he walks, has trouble holding his head up.

So as you can tell from this forum.. everyone experiences the progression differently than the next person... Doesn't make it easy though.

Give your dad as much love and support as you can.. he knows you love him and you will have the memories you make now forever.

And don't forget you can ask about ANYTHING here.. you'll get the answers you need from people who care and know!

 

[michael0314]

Theres another new drug on the market called nuedexta for EL. I take it and it does help. Expensive if you had to pay for it out of pocket not sure about medicare or medicaid. You have the right attitude, make the most of the time you have left. I tell my family it is a blessing because we can say goodby on our own terms and make many pleasant memories before the end comes. You are very brave. I'm sorry you have a reason to be here.