What is Going On

[wewillbeatthis]

Ok well Dad has been doing real well as I have said with the exception of the walking..

However, he has been having a bad few days. Saturday he was sad and crying cause he wanted to go out for New Years but not have everyone look at him cause he walks strange... Then he had a great time and did not get home until after 2:30am. Sunday he went shopping all day and then was tired and went to bed at 9:30pm. Strange for dad for he always goes to bed late... Monday he was normal but a little slow speaking, yesterday and today slow speaking but slurred. Why does this happen when he is tired, sad, excited, or stressed? I have read all over that it goes from limb to limb but how did it go from the feet to one leg and now to the point that once and a while he is slurred?

Help... Also I try to tell him not to speak on speaker cause it causes him to put to much on his voice and then this begins to happen. For instance on days when for work he is on his cell on speaker for 2 hr's yelling he is like this....

What could this be and how can we help it?

 

[dana]

I wish there was a simple answer to this disease. It is so hard because it effects everyone so differently. My only guess would be that the ALS is moving towards the bulbar form if it is effecting his speech. I don't know that if you start with limb onset, if it can move towards the bulbar onset. My dad's speech started out with the slurring of words, then moved to slurring and talking slowly, and finally is to the point where he says one or two words at a time (and most of the time is VERY difficult to understand the one or two words). It is hard because my dad used to be such a social talker. Just today, I called his cell phone and his voice mail picked up. The voice mail has his recording from before he started losing his speech. It brings a tear to my eye each time I hear it, because he sounded so normal. If only we could turn back time...I would record him saying a lot of different things. I don't know why the symptoms flare up in your dad's case. Maybe talk to his doctor about it, and see what he says. Hang in there.
Dana

 

[Suzanna]

Re:

Dana, hi i'm new to this, please tell me what 'bulbar' means.
TY
Suzanna[/quote]

 

[rcharlton]

It's a tough call with me as to whether I initially had limb onset or bulbar onset.

With bulbar onset - the muscles that control the speech, chewing and swallowing are the first muscles affected.

The weakness in my hands was what first prompted to seek medical attention - but it is possible that I had bulbar symptoms as well at that time. I am literally tongue tied so I have always had slightly slurred speech - so it's tough to tell.

 

[dana]

Suzanna,
Bulbar, as rcharlton said, is when the ALS effects your speech first. In my dad's case, he has an extremely difficult time talking and he chokes on liquids periodically. When he was given his so called "diagnosis" he was walking great, golfing frequently, and did not have any other physical symptoms. He has become weaker as time has progressed. He gets tingling in his arms and stomache. You can also tell that he has lost a lot of muscle. His body is getting weaker. I don't know if the ALS is taking over or if he just cannot get back what he lost from a bad cold he had. Anyways, hopes this answers your question.
Dana

 

[Suzanna]

Re:

Dear Dana,
Thanks for explaining that for me. If what you wrote is accurate then I have that. As I started slurring, now with impaired speech........however I luck out and got some friends that are Dr's to push to get me a "patatal lift" its a soft plastic peice that will lift up the lagging palate to enable better speech, breathing, and swallowing. I'm still walking running,swimming , although I have loss os muscle and strength from my elbows down.So I guess I have that, that you describe.
How do I ask this question, w/out offendind anyone?
But is this the worst form of ALS?

 

[dana]

Suzanna,
Everyone's ALS case is different, from what I have been told. I have read that women typically live longer than men with this disease. I have read that the younger you are, the better chance you have of living longer with this disease. I have also read that limb onset people usually live longer than people with bulbar onset. But who really knows? I think the biggest thing that will prolong your life is a positive attitude. If you can fight the depression off, and live the rest of your life in the best way that you can, I think you will outlive someone who thinks about all of the negative stuff that comes along with this disease. Mind over matter. I know that with my dad, the last month and a half he has been depressed and having a difficult time with his situation, and he has progressively gotten worse. He was doing much better when he had the mind set of fighting this thing. I don't think he is wrong for being depressed, because I don't know how I would be if I was in his situation, but I know he was healthier when he was more optimistic. It sounds like you do have a positive attitude, and you are making the best out of your situation. Stay strong.
Dana

 

[Al]

Hi Dana and Suzanna. This really a crappy situation we are in but a positive attitude does help. Statistically speaking : Bulbar ALS is not the best to have. I have known people with limb onset and people with bulbar onset. Attitude does play a large part in survival. Try to live each day to the fullest. I could give you places to look up the stats but how do I put this delicately? Sometimes it is better not to know. We all know that we have a limited time on earth. A bus, a car crash ,a fire, a plane crash, a serious illness all might take us before we are ready to go. We with ALS know we are going to go before we are ready and before we ever thought we would go.
Some of us will live long. I know a guy in B.C who lasted 17 years. My friend Elaine lasted only about a year after diagnosis. We don't know. Doctors don't know. If you have a God you believe in :maybe he knows. As my 91 year old dad says " Just do the best you can" I know this posting isn't as upbeat as you would have liked but as I said earlier I'm a realist. I know I'm screwed but I'm not taking it laying down. Unless I have my Bipap on. LOL.

 

[Suzanna]

Re:

thank ypu both for the info,it wasn't of course what i wanted to know but needed too. I have tried to be optimistic , i have tri weekly swims and walks and my palatal lift is put in next week, this will help me swallow, breathe and talk.
My QUESTION; in Canada do we have a legal right to stop eating and refuse help, Does anyone know?
I think you know what i'm asking.........
Suzanna
38
DXAug05

 

[Al]

Hi Suzanna. If you get a copy of the Sue Rodriguez story it might contain information that you are looking for. From what I am led to believe there are people involved with some Hospices that will allow you to make the transition that you are asking about and help make it as painless as possible. I would hope you are just asking for curiosity sake rather than having something in mind.

 

[Suzanna]

Re:

I am ambililent on the topic as I have no family,and sole custody of a 13 yr old daughter, very very few friends that i can trust. The father ( who is and was my Dr, at 1 x) disapeared, but i just cant take the what ifs'. Sitting inside, taking tons of xanax waiting for this ghastlty disease to sneak and sliver quietly like a snake thouh my body.
No i will see how things go , can they force to a hospice, i want to be at home with my art and books.................if i goto a hospice my daughter will be taken away and i live for her now..............

 

[A Daughters Love]

Dear Suzanna,

I am sorry to hear that your heart is so broken. I'm sure you are probably the world to your daughter. Live for that! She will need you as long as she can have you. My mother has ALS and is living with us. I will always respect her wishes, but am not yet ready to let her go. Mother's can hold such a huge part of there daughters heart. Try to make something positive out of this, anything. it will help your state of mind.

Take care!

 

[rcharlton]

Re:

[quote:0141f0ec01="Suzanna"]My QUESTION; in Canada do we have a legal right to stop eating and refuse help, Does anyone know?
I think you know what i'm asking.........
DXAug05[/quote:0141f0ec01]

Hi Suzanna,

You have an absolute right to refuse any treatment or procedure - even if to do so would mean certain death.

No one can force you to eat or to receive any medical care you do not want - as long as you can voice your wishes. If you are worried about getting to a condition where you cannot voice your wishes - you should look into a power of attorney for personal care - where you can appoint someone you trust to let medical practitioners know your wishes. In a power of attorney for personal care you can direct your attorney as to what types of procedures and palliative care you are willing to undergo - or leave it up to the attorney's discretion.

I believe that the issue of living wills is still a bit gray in Canada.

The case of Sue Rodrigues revolved around assisted suicide. You cannot request that your life be ended prematurely by any active means. You can starve yourself to death if you want - but you cannot ask someone to give you a lethal injection or dosage of any drug.

Fun talk for a Monday morning.

Al is right - as tough as it may appear - you must remain positive. Everyday is a gift. I just saw Shawshank Redemption last night - there is a great line in that film "get busy living, or get busy dying". I'm doing my best to get busy living.

Richard