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[wewillbeatthis]

Hello Everyone,

I have to first say that I have been crying all day up until I found your site and now have a bit of hope. My DAD is actually the person that was just diagnossed yesterday.... For the past 2 years he has been going through something nerve related... He was stiff in his left leg, then tripping, walking a bit odd, and then he was unbalenced to the point that he would have some falls... When he was cold, anxiety ridden, nervous, or just tired he would tend to freeze and or walk very stiff.... When he would first get up out of a sitting position he is really stiff....

Well in November of 2003 when he was at his worse he went for an EMG and a visit to the Neuro. from there he had a disk problem they gave him a steroid pack and he was walking a great deal better.. Then 3 months or so went by and he was back to the old way so started the tests.... Come March of 2005 which is a year and 4 months later the doctor said I want you to go see an ALS specialist so we did with the thought that it could be this... However, it was not getting any worse thank GOD so we thought perhaps PLS or MS or something different..... Well after that appt in March he started taking 10mg of baclafron and he was no longer stiff, he was able to balence himself get up and down steps however still get's stiff after sitting for a long period of time and walks with the cane very slow... But hey he is getting around.... He also started PT and is now playing GOLF off of the senior T's without falling, eats great, gets around without a problem.... The only problem is the slow spastic gait, he has very little sensation on the bottom of his feet, and some days he does slur but just certain words and very little..... Well August 9th we were told it is a form of ALS however not to be over paniced for it is a progressive disease but not aggresive? The doctor sent him home with directions to take now 10mg in the am and 10mg in pm of baclafron, Ritulaz will be taken 50mg once a day for two weeks and then twice a day once adjusted.... Vit. E, C, and Beta Caratean? He is to come back in 4 months unless something changes... He had no change in 6 months and really not much of any in 2 1/2 years... Is it possible that he will stay like this will little to no progression and live for many more years?

I appreciate any responses you can give for I am so scared and my dad is just so calm.... He is going about this like whatever it is I am not changing a thing cause it is working for me... I will beat this.... I will live for another 20 years

 

[TBear]

Hi:
Glad you've found us and welcome to our little out post. Everybody's ALS progression seems to be different. My wife suffered with it for 4 years and I have a friend who has had it for over 13 and is still playing golf. With luck and good management I hope your dad makes at least another 20 years.

CHeers

T

 

[wewillbeatthis]

Tbear thanks for your response... I am sorry that your wife has passed... This disease is horrible..... I just don't understand how in some ways things are getting better yet other things get or remain worse... Exaple: My dad took a year off of gold due to the weakness and the balence. Now the balence is so great and the weakness is not there however the spasticity and stiffness is...... What does all of this mean? Your friend that plays golf what are his symptons?

One thing that really concerns me about my dad is that some days he does slur and other days he does not... Does this happen with everyone?

 

[Mike27]

Hi there,
Glad to have you on the forum!
Like TBear said, it’s really hard to say because everyone has such varying degrees of symptoms. The only thing I question is the lack of feeling in your dad’s feet…I’ve never heard of that for ALS, but again, everybody is different.

The vitamins that your dad is taking are the same I was advised to take in ’93, do they work? Who knows? But it doesn’t do any harm so I continue to take them.

I would advise that perhaps you seek a second opinion. There are many diseases that mimic the symptoms of ALS so you want to be sure. There is no definitive test for ALS, it’s more a process of elimination.

This is a hard time for you and your dad, ask anything you want here…there are many members here to help. Your dad is lucky to have a child like you to look out for him!

Cheers and good luck!

BTW, I love your member name! We WILL beat this, of this I have no doubt!

 

[wewillbeatthis]

Mike thanks for your response.... This is in fact our second opinion.......

I know we will beat this and that dad will be with us for many more years to come.... The question remains if he will be getting around the same?

You mention that in 1993 you were advised to take the same vitamins are you also on any medication? What are your symptons? On your website I read that yous began as limb on set what limb?

I also see you enjoy golf that is great.... Do you still play?

Dad still plays and actually ge is playing more this year cause his balence is much better......

Hope to chat again with you.... Stay positive and know that a cure is coming....

Jen

 

[wewillbeatthis]

Mike thanks for your response.... This is in fact our second opinion.......

I know we will beat this and that dad will be with us for many more years to come.... The question remains if he will be getting around the same?

You mention that in 1993 you were advised to take the same vitamins are you also on any medication? What are your symptons? On your website I read that yous began as limb on set what limb?

I also see you enjoy golf that is great.... Do you still play?

Dad still plays and actually ge is playing more this year cause his balence is much better......

Hope to chat again with you.... Stay positive and know that a cure is coming....

Jen

 

[dana]

Hi Jen,
My dad is a golfer too! He hit a hole in one a couple of weeks ago, which was the highlight of his entire golf career. My dad is fortunate enough to be able to play still. His ALS symptoms are the bulbar form which effects his speech. He has a hard time talking, but physically, he seems completely normal. I'm glad that your dad is still able to play golf. If this disease has taught me anything yet, it is to enjoy each minute and to take advantage of the abilities that you still have. Encourage your dad to keep his golf game going.

It is so weird to me the different perseptions we get from doctors. I really question what they truly know about this disease. Your doc told you this disease is progressive, but not aggressive. Our doc told us my dad has a slow form. Then you hear other people who progress so quickly. I know that everyone is different, but the different suggestions and advice from doctors just seems odd. It is hard for me to put faith into some of these doctors.

Well, I hope you find some comfort in this forum. I sure have. All we can do is pray that God will heal our dads and pray for a cure. What a blessing that would be.

God bless you and your dad,
Dana

 

[wewillbeatthis]

Dana,

I have to say that I agree with all of your thoughts. The doctor that my dad goes to is one of the best in NYC and still was unable to give a total explanation of why different things are happening.

What medications does your dad take?

Where do you live? We live in New York....

It just is so strange my dad started with this leg stuff and this strange walk 2 years ago..... Now every once and a while I hear some slurred words and that makes me worry that perhaps things are coming on faster or something.... Have you heard that other things come and go or perhaps every two years a new sympton will start... I don't know what to think anymore...

Jen

 

[wewillbeatthis]

I have read over and over about the worms under the skin feeling when you get these sensations... My dad has indicated to me that he never ever got these nor does he get them now. Does everyone get these?

I am so upset right now. My parents are divorced and so many things are going on right now.... My dad is really mad at my mother over something so silly. Normally I would say whatever and say talk to you tomrrow dad. However, I am scared that with all of this going on that the stress is going to make him worse.... Does stress make this condition worse make things come on faster? I know that when he is upset or nervous his walking is almost frozen... This is why I think that stress is a factor....

One other issue is this.... My fiance and I have decided that we are going to get a big enough house for dad to live with us yet still have his privacy... I will be able to be there for him and this in turn will decrease the worry that I have when I am not near him... With this being said is leaving him for a few days a concern I should have... Meaning that can things happen just at the split second that he must have someone with him always?

I am sorry if these questions are a bit silly but I need to understand so that I can ajust my life to better his... My dad is my world and I must make this better or at least easier for him...

Jen

 

[dana]

Jen,
I totally understand your worry and axiety. You will go through those emotions off and on throughout this process (at least that has been the case for me). You will also have times when you feel strong, and that no matter what obstacles come your way, you will survive this. The emotional roller coaster sucks, but I think it is completely normal.

I think it is great that you are going to be getting a place where your dad can move in if he would like. My parents are still together, so my mom has really been the rock in our family. She takes care of my dad with whatever he needs. It sounds like you are going to be your dad's rock, and that is so great. Your dad is very lucky to have you in his life. As far as stress goes, I don't know if it makes this disease progress any faster, but it just puts a damper on your mood. I know for my dad, when I see him stressed or upset by something, I try anything in my power to make the situation better, and try to make him smile or laugh. I am sure you are doing the same with your dad. I would think it would be fine for your dad to have some alone time too. My dad spends a lot of time golfing, and sometimes it is done by himself. The only thing that worries me with my dad being alone is the whole choking factor. He has choked a few times on food, and I worry that he might do this when he is by himself, which could be very dangerous.

My dad is currently taking medication for Lymes disease. I saw all of the different meds you had listed for your dad, and to be honest, I have no clue if my dad is taking any of those. My dad is on some heavy antibiotics right now, and is doing pretty well with them. No major side effects, so we feel lucky.

I know how hard it is to see your dad suffer through this. It is the absolute worst feeling to see such a strong man show any weakness. All you can do is continue to support him, love him, and bring some happiness to his life.
Dana

 

[TBear]

Jen:
I agree with Dana, progression of symptoms is different with everybody, and sometimes it plateaus. In our case, my wife was noticed having difficulty writing report cards in June. She was diagnosed in September, unable to work by October, in a wheel chair in February and unable to speak properly by the following June. She stayed that way for 3 more years!
There is no "norm" with this sickness so the rapidity with which your dad's symptoms change will be different. It may happen quickly... but I don't know of anyone who has had symptoms crop up over night... I could be wrong though.
The stress and shock of having ALS and the need to have people around him help out, is something that he will have to accept on his own terms. (but then again I don't know many New Yorkers who aren't stessed on some level!) That you are there to help is a blessing, but try to keep things as normal as possible... it's easy as a caregiver to forget that you have a life too. Your dad will know when he needs help and the best thing that you can do is get aquainted with your local ALS medical support team. He will need Occupational therapists, speech therapists and equipment to support him as well. Here in the Toronto area we have an ALS clinic where all of these things are centralized. Perhaps there's one in NYC.
Also, for your own part there are pamphlets that you can read online from ALS Canada on this site that can help you with what to expect. The web site is hyperlinked at the top of this page.
Good luck and my advice is to find a sense of humour... it will come in handy. Being here is a good start.
CHeers
T.

 

[wewillbeatthis]

TBear & Dana,

Thank you for your kind words. I do feel that this is going to be my second home through all of this.

I have decided to just live life the way I was this time last week. We did not know the reason for his walk but it was there and has been for 2+ years. I have to remember that the only thing that changed it was given a name and some medication will be taken. From what I have read from your notes and other sites the medication will not make it worse, and this could be a platue that he is at and could stay for years....

I am going to continue to pray each and every day that he will not get any worse and if he does for it to not happen for many years to come.....

I am also going to continue to pray for a cure and or at least a medication that will stop this in it's tracks so that all of these wonderful people that are either going throuhg it or have a family member or friend going through it can live life again......

Ciao
Jen