What a few months these have been

[heredownsouth]

I've been reading the threads for several months now, as my dad was diagnosed in August, 2009. What a roller coaster ride this has been. My family has never experienced anything like this before. My dad's brother recently passed away-he also had ALS-so we are currently awaiting the results of the genetic testing to see if the SOD1 gene is identified. The stress of knowing that we may also have this gene is unbearable to my sisters and I. My dad has deteriorated so much in just 4 months. He was diagnosed at his first neurology appt. in August and had that confirmed in Houston in November. In the summer, he was walking and talking normally. Now, he cannot walk or even support himself to transfer in or out of a chair, the bed, etc. His voice is almost gone. It is unintelligible to other people. The EL is somewhat controlled with meds, but he still cries more than I am used to seeing him be emotional. He has failed a recent swallowing eval and will be getting a PEG soon. So many changes in such a short period of time. This seems to be progressing at record speed. Has anyone else experienced these problems so quickly? I gain so much information from these forums and I'm hoping I'll pick up some support along the way. We sure need it!

 

[Al]

Sadly, no one can tell how fast the progression will be. I've seen people gone in 6 months and know people doing not too badly after 19 years. Sorry about your dad and uncle. If there's anything you want to ask, go ahead. We'll try to be honest but hopefully answer with compassion.

AL.

 

[imanzcan]

Hi heredown....I am so sorry to hear about your uncle and now your dad. This is so heartbreaking. I agree with Al, no one know how fast the progression will be. Each person is affected differently. I joined this forum right after my 37 yr old (then) son passed from als on June 3, 2007. It will soon be 3 years. It seems like Eternity since i seen him. My son passed 15 months after he was diagnoseded. I have seen folks here that have had als for a long time. You and your dad will be in my thoughts and prayers. Which doctor did your dad see in Houston? Was it Dr. Appel? May God bless you and your dad. This is a very cruel disease. I never knew what it was until it hit home. So cruel! So very cruel!

Irma

 

[DgtofTNfan]

Hi heredownsouth,
Welcome to the forum. I am so sorry to hear about your uncle and how your dad is progressing. As others have said progression of ALS is different for every person. Please feel free to ask any questions. The members of this forum are supportive and helpful and hopefully we can help you.
Dana

 

[brooksea]

Very sorry about your daddy. As everyone has said each person is different with their progression of symptoms. I hope your daddy plateaus as can happen with this disease. Good luck to you and your family.

Hope the PEG placement goes well for him. Get a Vita-mix (as Joelc has previously suggested -thanks Joel) and pulverize that Cajun food and he will still be able to eat his favorite things via PEG.

 

[heredownsouth]

Thanks to everyone for the well wishes. Irma-my father did see Dr. Appel. One of my other sisters accompanied my parents to Houston. We are all taking turns with the appointments, etc. They thought THE WORLD of Dr. Appel. He was direct, but extremely compassionate and caring. I respect him so much just from what I have heard about him, and I haven't even met him! His staff were fabulous as well. What was a much dreaded appointment turned out to be not so bad.

My dear mom needs just as many prayers, as she is not coping with this well at all. She cries on and off during the day, every day. She is on an anti-depressant, but we will suggest that she have that re-evaluated, as it is not helping. She just falls to pieces over everything. Wishing that 2010 brings us more peace than the last half of 2009 did.

 

[Blackpool]

peace be with you all,

 

[Blubear]

Dear heredownsouth, I am so sorry that he seems to have a fast progression of the disease.....It is so shocking to watch a loved one go downhill so fast. As for mom, she is already grieving. I too lost my husband (not to als) suddenly, and I too was on anti-depressants. I dont know how anti-depressants are suppose to work considering you are suppose to be depressed given the circumstances and it is not a chemical imbalance. However, after a year and a half of major suffering, I was given Zyprexa to take on top of my anti-depressant and I finally turned the corner. (I am better now and dont have to take the extra med) Some anti-depressants can take up to 2 months to work, but if she is not doing better after the 2 months get her back in to the doctor ASAP. The correct meds makes all the difference and she is going to need a clear mind and her strength with what she is dealing with. My father was diagnosed Sept 09 and is not progressing that rapidly so far. His cousin also died of ALS. I have decided that I dont want to know if it is the genetic form or not. (familial) Two reasons, one what am I going to do with knowing that I have the gene? There is no preventative thing you can do about it yet that has been scientifically proven. And two, how is my current life going to be knowing the impending doom that is looming in my future? Making that decision not to know was tough, but once I did I felt set free. Everyone is different in their feelings about this. Hang in there my dear, and I hope dad gets a plateau soon so you can all take a deep breath. We are all here for you anytime you need to talk!
Hugs,
Blubear

 

[heredownsouth]

Bluebear-cute name-thank you, thank you, thank you for the post. It is most helpful. In this process, my family has learned what "anticipatory grieving" is...we had no idea there was such a thing until being told. It is actually grieving in anticipation of death or failing health, etc. We think that though we will grieve when my dad dies, it will be different than what we are going through now. Mom is on Wellbutrin-we're waiting and watching for a while longer to see if she improves. Meanwhile, I am waiting on a call from the neurologist at the ALS clinic (probably tomorrow) for the results of my dad's genetic testing (?SOD1 gene?). I really don't think I'll take it a step further to have myself tested if he does in fact have the familial form. Think my sisters feel the same way. Dr. Appel said numerous times that they are "on the brink" of some major developments in the treatment of ALS, so that gives me hope. If anyone has any more information on what he might have meant, I'm sure everyone would love to know. Again, thank you and take care.

 

[Blubear]

Hi again heredownsouth, I believe your doc is talking about all the new breakthroughs with stem-cell treatments. Clinical trials have just been approved here in the USA, but are not as far along as like what is happening in Monterrey Mexico and Israel. We do have a member here that has been to Monterrey and had the stem-cell treatment. He is very open and honest about what is happening with him and we are all watching him and holding our breath to see what happens. If you want to see what it's about go to the search button and plug in Monterrey stem cell and it should pop up, and then "subscribe" to the thread. That way when anything is posted it will come up in your User CP. There is not a cure out there yet, but most of us believe that it will come by way of stem-cell implantation. Also the "Knopp study" has shown promising results, and we are hoping to get through phase 3 in 2010. That is a medication that helps the symptoms though and not a cure. You can go onto the ALS Association website about that or google Knopp study. There is talk about it here on the forum too. Keep logging in here, there is a wealth of information and a lot of experience with care giving along with a TON of emotional support!
Keep us posted on dads condition, and moms too. We care about you all!
Hugs, Blubear
PS Blubear is what my dad called me when I was a little girl because I wore a blue fur coat....hahahaha

 

[thelma313]

Hi herdownsouth,

Welcome to the forum but I'm sorry you had to come looking for us. I am really sorry to hear of the loss of your uncle and of your father's diagnosed. I know how especially difficult and ALS diagnosed is and my thoughts are with your mom as well. Please tell her she is not alone.

I am glad to hear that your dad is getting a PEG. This will help him get some energy back. I know exactly how you feel about seeing your dad being emotional. It was the same for me with my dad. He was always stoic and kept a stiff upper lip, so seeing him cry really broke my heart. It still does actually.

Anyway thank you for sharing what "anticipatory grieving" is. I did not know that term but I feel like I have been in and out of that for the last 18 months since my dad was diagnosed. All I can tell you is this journey ebbs and flows. This diagnosed does not mean that you will not continue to laugh with your dad and have joy in your life but it does catch up with you every now and again.

If you have any questions, don't hesitate to ask, we are here to help.
Rosella

 

[indigosd]

heredownsouth, it is a roller coaster ride! I personally am terrified of heights and would never get on a roller coaster if I had any choice! The only choices that we have on this ride are our perception of the reality and our reaction. Web has had a ongoing progression and has a PEG. He amazes me. What soul courage he has to wake up and go to sleep day after day knowing that he has been given a death sentence...when I ponder that reality and see such courage, I feel brave. :] It is a process of learning to let go. It is the realization that there is NO CONTROL. It is taking a deep breath, strapping yourself in, throwing your arms up and riding it to the end. My advice is to empower yourself and your family in any way that makes sense to you. Become a powerful Advocate for your PALS! :] You are not alone. Sending you the comfort of hugs from the Prairie.