Just Starting

[RICHPD]

My 88 year old dad was just diagnosed this week with ALS, he does not yet know. We will be taking him to Boston for a second opinion. His symptoms started in October but have progressed over the past month. He has gone from weakness in his right leg while walking to not being able to stand up without support. His right hand cannot hold objects because it has no strength, his left hand and and leg seem fine as of now.
I will read as much to learn more but for now I just want to ask a few basic questions.
I understand all cases and people are different but here goes.

Will all symptoms eventually consume i.e. speach impaement, inability to swallow, etc.

He reports no pain now, does this change and if so how is physical comfort administered, even without pain how extreme are the physical suffering symptoms.

He was living alone and obviously cannot going forward, where can an ALS patients live,
does medicare and blue cross cover assisted living facilities, is nursing home an option, what are my other options. Our home can welcome him but we work and he would often be alone.

How rapid ( i realize this really is a case by case) does one decline and is age a factor.

lithium from other posts seems to be real hope and seems to be working based on what people are saying, why does it not have wide spread usage????

I'll go back to reading but thanks your your anticipated responses, And what else should I be asking for now.

[stevef]

Rich

Sorry to hear about your Dads Dx. I am from Weymouth also. What clinic in Boston are you going to. everyone sypmtoms seem to be different in the progression of the disease so nothing is set in stone. I have heard somewhere that Massachusetts has either built or is building a home for single PALS but i am not 100% on that so ask at your appointment or contact the MASS ALS assicaition. Good luck with everything

Steve

[RICHPD]

Hi Steve, his doctor is having him go to the Mass General Hospital.

[jimercat]

RICH,

check out the following link re: ALS Facility in Mass.

www.leonardflorencecenter.org/ (http://www.leonardflorencecenter.org/)

Very sorry your Dad has been dxd with ALS. Every PALS (person with ALS) is different. Your Dad may or may not develop all the symptoms. But it is good to plan ahead for augmentative devices just in case ( such as voice banking ).

I think pain also varies from person to person depending on what has been impaired. Range of motion exercise is very important.

As for Lithium, wide spread use is not reported because this has recently come to the forefront through an Italian study ( although I've read of animal studies re: ALS & Li in the past). Please go to the following web site for more info. Look at the chart of PALS that have undertaken a self study on Lithium. My husband is #111 DaddyO.

Good luck to you and your Dad!

[lhagsjr]

I wish I coultd get ALS at 88. He had a good run, may he rest in peace.

Try 29 years old. Newlywed. Try those apples.

Dont come crying here with an ALS case with an 88 year old.

[Steve100]

Dont come crying here with an ALS case with an 88 year old.

Is that appropriate? No, suffering is not confined to the young. This board is for everyone.

[stevef]

i am so glad you said something Steve. that comment has no place in this site. I am a young person myself but would never say that to anyone.

[lhagsjr]

get over yourselves. The guy lived a great life. experienced everything. i never got a chance to have a child, i never really got to enjoy my marriage, i never got to enjoy my house that i worked so hard to buy. This guy had a great life. EVERYONE dies someday. EVERYONE.

[jimercat]

Lou,

I realize you are hurting and feeling down because you are so young to have a problem with your body that does not seem to have a resolution. I wish you could turn your bitterness into something positive to help not only yourself, but others.

Each person that is touched by ALS or any MND has a reason to lament and gnash their teeth. But there are two ways you can deal - either wallow in self pity or look for a purpose and act on that purpose to make your life more fulfilling. There are wonderful PALS that have faced the adversity of ALS and made their life and the lives of others something to be treasured.

Every life is special, whether you be 29 or 88. And each life contributes to mankind one way or another. I'm sure there is someone in your life Lou that cares about you as much as RICH cares about his Dad.

[Lorie]

All Life is precious. I had just Pm'd Al yesterday about a young woman that came on here and was over anxious. I told him that she is Young. Just like Lou. I can understand Lou's anger, because he has not really had a chance to experience a normal Life in the process of the different experiences you have as you age normally. I also agree with others, ALS is devistating at any age. For the PALS and the Family. No one ask for or deserves this sentence.

COMPASSION FOR ALL!

Lorie

[lhagsjr]

he is 88. Hey pal, u got 59 years more then me...

[jimercat]

Rich,

If you have any questions please feel free to ask. Most of us that come to this forum are here to provide support and information in order to help each other out.

Please keep us informed on how your father is doing. Anything you learn and can add to this forum will be welcomed and may help another PALS along the way!

[Icanmanz]

I wish I coultd get ALS at 88. He had a good run, may he rest in peace.

Try 29 years old. Newlywed. Try those apples.

Dont come crying here with an ALS case with an 88 year old.


Oh My God!!!! I cannot believe what I am reading! I am the type of a person that tries like "hell" to mind my own business, but this time I gotta come forward and throw in my 2 cents! ihag, your post is very rude! Als is Als!!! It doesn't matter if you are 1 yr old, or 100 yrs old! This 88 year old man deserves a lot of respect like anybody else. This is an insult! Very uncalled for! Sorry folks----this is not like me!

Irma:evil:

[CindyM]

Yes, lhagsjr. You are way out of line. If you want to make somebody feel bad you have come to the wrong forum. I've sent you a PM. Cindy

[CindyM]

Hi Rich! Sorry I did not welcome you sooner but my day got away from me yesterday! Anyway, I am glad you decided to join us but sorry for the reason you are here.

To answer one of your questions, your Dad probably will not feel much pain with ALS. He may feel mild pain in some muscles if he overuses them, sort of like overdoing it at the gym. And as the muscles die off, some folks complain about their bones poking into the bed or chair but memory foam often takes care of that. His most troubling issue may well be anxiety. He is likely to have trouble breathing at some point, and if he is given a bipap, some folks have trouble adjusting to something over the nose or mouth.

His other biggest adjustment will most likely be loss of independance. He could get to the place where he needs help with simple, everyday tasks and for most people this is a huge blow.

Some, or all of these things, may happen over a period of months or years. Everybody is different.

Contact us as often as you need. People are more than willing to answer your questions and there is a wealth of information here, all of it from folks who live with this disease every day. Cordially, Cindy

[RICHPD]

Well we made an appointment for a second opinion which was supposed to be next week, which I thought was rather quick but I was pleased. Even better I received a call today that there was a cancellation for Tuesday (tomorrow) and naturally I took it. So I take my Dad tomorrow. Not sure if they will be able to tell me anything then or have to wait for reports but at least I'll have some info sooner than later. Hoping for the best..

[Icanmanz]

Oh, hi Rich! Am so glad you're back! Thanks for sharing with us. I'll be praying for your dear Dad! God bless, and good luck!

Irma

[CindyM]

So today is the day! Be sure to check in with us when you get back...Cindy

[hopingforcure]

Ok I know everyone was mad at Lou for his comment, but let me say this, my grandfather got cancer when he was 84, when my dad told him he said oh well, if that did not get me something else would have. I think that is what Lou meant.
I think this disease is sad for everyone, but I am sorry I am a little more moved when it is someone in the prime of life, or even younger. I am not saying anyone should have this disease, but I think having a young family, or not having a chance at a family is devastating... I myself would be able to handle this disease one-hundred percent easier if I had been much older, without youngsters, and such.. Just my two cents.

[Mary Helen Barr]

Rich,

My father was diagnosed at 72 and died at 79. He lived alone until he died. I went over there every single day and took care of him. I would get him settled in his chair, fed, toileted, cleaned, etc, and then leave and he would be alone for several hours until someone came and gave him lunch. Then in the afternoon he was alone until someone else came and did his dinner. I did the hard stuff at the beginning of the day, 7 days a week, so I knew that the important things were taken care of. He soooo much did not want to be in a home, and it was important for me to try to see that he didn't have to. Anyway, what I'm getting at, is that your father could possibly still continue to live alone. He will just have to agree that he's not going to do things that might get him hurt, like try to walk or eating (choking hazard). It is possible, or at least it was for us. People were horrified, but it worked for us. It was very difficult for me, but it was still doable. My dad agreed that he knew there were some risks, but it was worth it to him to stay home. I hope that helps. I don't know how we would rate who should get ALS and when. I know I was incredibly sad that I had to see my father get that horrible disease, but I was glad that he had me to help. Mary Helen

[Icanmanz]

I, too, lost a young son almost a year ago, but I see it as God calling His children Home. He is the one that is in control, we just have to be ready, and accept His work. I did not see where anybody got mad at Lou, we were in total awe. Lou is part of this family, too. This is the best forum on the net. I honestly think we have a wonderful bunch! God bless everyone!

Irma

[CindyM]

Thanks for the ocmpliments, Irma!

[CindyM]

I bet Rich would like to hear more comments form folks who helped their elderly parents through ALS. Anybody?

[Lorie]

I totally got what Lou was saying. And I think I replied in the right way. In respect to bothy parties.


Lorie

[RICHPD]

Bad news for us, he has ALS so says the second group of doctors seen today although they are scheduling him for another EMG since these particular docs were not the ones do to the first EMG.

Thanks for all of your support it’s very appreciated and yes Cindy I would love to hear some elderly health care stories from others. The doctors seeing him today and the social workers at the re-hab center are both suggesting a nursing home soon. I would love to take him to my house and still may for at time but due to his age, eyes are failing, very poor hearing, inability to get out of bed alone, everyone is concerned for his well being as am I. I have a formal meeting with the social workers on Thursday so hopefully we can come up with better options. Thanks again.

[Icanmanz]

You're welcome Cindy!

Irma

[Icanmanz]

Rich, you and your Dad are in our prayers. Rich, can your Dad still speak? I am so sorry for the bad news. May our Father be with him always during this journey. You are a good son. Do you have any brothers or sisters? God bless!

Irma

[RICHPD]

Irma, his speech is the strong and the breathing test he took today registered a 98. If I understand correctly that doesn't mean much but it's used as a bench mark for future tests. I am an only child so it will be just me. Can you believe just three weeks ago he was still driving during the daylight hours, though was getting ready to call it quits due to his failing eyesight and difficult walking.

[CindyM]

Hi RIch- on another thread they have started a discussion of taking care of our elderly parents along with our own families. Being an only child you may feel more stretched. Here's hoping for a slow progression for your Dad. Please keep us informed and feel free to ask anything that is on your mind! Cindy

[RICHPD]

Cindy, I can't seem to find that thread could you please direct me.

[Peg B]

Dear Rich,

When my mother and later my sister were dying from Cancer, we had hospice. My mother stayed with me when she could no longer walk and my sister stayed at her home. We now have a hospice center in our area, which I plan to go to when needed. The nice thing with this situation is I can stay home with hospice support until I am too much but then I can transition to the hospice center. Visitors are welcome 24 hours a day and each person has a separate room. Even pets can visit. The center is llicensed as a nursing home with all of the nurses and medical personnel. We are very fortunate to have such a place near us. You may want to check near you. God Bless You and yours and give you peace as you go through this. Sincerely, Peg

[CindyM]

Rich, I think I was thinking about this thread. http://www.alsforums.com/forum/showthread.php?t=4852

The discussion did not stick with the issue of caring for an elderly parent and young kids, but we did touch upon it. Pretty soon you will have full membership privileges and you will be able to PM anybody who you think has a situation similar to yours. Hope this helps.