Lou Gherigs???

[dis4harley]

My uncle may have Lou Gherigs. They have been doing tests. The latest test they are going to have to wait about 6 weeks for the results. But the doctor is definatly leaning towards it.

I know that people here always seem to know info on almost anything. So, I would like any info, stories, anything you have.


Thanks for any information you can provide.

 

[SunFloridaDisney]

http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/amyotrophiclateralsclerosis.htm

http://www.als.ca/

I know a friend of a friend going through that right now. Thinking of you and your family.

 

[hentob]

http://www.focusonals.com/index.htm

http://www.lutheroutloud.com/ (WARNING-The author of this site is no longer alive, but his site is very informative)

Also--BFS sometimes scares people into thinking that they have ALS (Lou Gerhigs)--Check this site out::

http://www.nextination.com/aboutbfs/

So sorry your uncle is going through this

 

[Cool-Beans]

I hope he doesn't have it, but here's a link.

http://www.clevelandclinic.org/health/health-info/docs/2300/2355.asp?index=9356

 

[Jeafl]

My husband's grandmother died of it.

True story--DH's grandfather was dying of Alzheimer's, but it was taking years which was so cruel. His grandma took care of him night and day until the day he died. At his funeral we noticed she started dragging her leg. At first they thought it was a stroke, but she was eventually diagnosed with ALS or Lou Gehrig's disease.

Apparently she had it for a long time but fought it off because she knew she needed to take care of her husband. Once he was gone, she just broke down and the disease overtook her.

It is ironic, but Alzheimer's and ALS are exact opposite diseases. With Alzheimers your body is often in good shape, but the mind is gone. With Lou Gehrig's, your mind is still totally sharp, but your body starts to go, usually from the feet on up. It is one of the cruelest diseases, because near the end, the only thing DH's grandmother could do was blink her eyes. She was totally aware of everything going on around her, but could not physically respond since she was totally paralyzed from the eyes down.

I will pray that your uncle doesn't have it. Although, I am sure that many strides have been made in the last several years. Hopefully a cure is not far down the road. Hugs to you and your family.

 

[chris1gill]

I know quite a lot about it... Which tests are they doing that take six weeks to get results? At this point I would try to be as upbeat and positive as you can, and realize that your uncle will need the whole family's care and support as his situation progresses. Hugs to you and your family, I hope that the answer turns out to be different....

 

[DawnCt1]

While Lou Gherigs Disease is not a very good diagnosis to have, the progession of it varies greatly from person to person. Steven Hawkings is the most famous person that I can think of with Lou Gherig's Disease. He was diagnosed at the age of 21 and has gone on to do his best work, while wheel chair bound, as a theoretical physicist. He has taught us what we know about black holes, quantum gravity, and singularities. He wrote the very popular book, A Brief History of Time, when he could barely speak. He is probably 64 now and he is still working. Amyotrophic lateral sclerosis or LGD is not a death sentence.

 

[Cool-Beans]

Steven Hawkings is the most famous person that I can think of with Lou Gherig's Disease.

Lou Gehrig is the most famous person I've heard of that had Lou Gehrig's disease.

I tried to read the Stephen Hawking book. Didn't get through it.

 

[DawnCt1]

Lou Gehrig is the most famous person I've heard of that had Lou Gehrig's disease.

I tried to read the Stephen Hawking book. Didn't get through it.

That is true but Lou Gherig is not currently living nor has he enjoyed the long life that Steven Hawking has. While Lou Gherig was certainly the most famous person with the disease in the United States, Steven Hawking is known and respected for his work in physics world wide. His personal life was "full enough" that he divorced his wife and remarried.

 

[Cool-Beans]

That is true but Lou Gherig is not currently living nor has he enjoyed the long life that Steven Hawking has. While Lou Gherig was certainly the most famous person with the disease in the United States, Steven Hawking is known and respected for his work in physics world wide. His personal life was "full enough" that he divorced his wife and remarried.

For Pete's sake, Dawn, it was a joke.

I know who Stephen Hawking is. I think most people do.

 

[grinningghost]

My aunt has it. She's not doing so well, but that was pretty much the prognosis for her, so she's coping. She can no longer walk or stand alone. She has a feeding tube, but can still eat a little on her own, but often doesn't feel like it.

She has lost all use of her hands, which is sad because she was a nurse her whole life and obviously, her hands were her livelihood.

Her spirit is still quite good however. She spends her days reading ALOT and watching TV.

Good luck to your uncle. ALS isn't a cake walk, but I've seen some pretty inspirational people who've had it. They amaze me.

 

[DawnCt1]

For Pete's sake, Dawn, it was a joke.

I know who Stephen Hawking is. I think most people do.

I know it was a joke, except the OP is very worried and concerned about the possible diagnosis of ALS in her uncle. I was attempting to give her some encouragement that there is life after a diagnosis of ALS and that some people can live a long and productive life. Sadly, Lou Gherig was not as fortunate.

 

[hentob]

To be honest with you, I think anyone can live a long life w/ALS like Mr. Hawkins. As long as they have a nurse or two 24/7 to care for them. It is a matter of do you want on be on a ventilator and not be able to move, talk, breathe, blink, eat, etc. ? I don't think many people have the means or the will to live as Mr. Hawkins does.

 

[DawnCt1]

To be honest with you, I think anyone can live a long life w/ALS like Mr. Hawkins. As long as they have a nurse or two 24/7 to care for them. It is a matter of do you want on be on a ventilator and not be able to move, talk, breathe, blink, eat, etc. ? I don't think many people have the means or the will to live as Mr. Hawkins does.

In the United States, MEANS is irrelevant. That care will be provided for you, including 24/7 care, a ventilator, feeding tube or what ever else is required. One does need the will to live as DOCTOR Hawkings has. His years have been very productive and worthwhile; not only for him but for the scientific community and I would assume, his friends and family.

 

[hentob]

In the United States, MEANS is irrelevant. That care will be provided for you, including 24/7 care, a ventilator, feeding tube or what ever else is required.

I also think his MEANS allows him to have the very best. I am wondering if MEANS are so irrelevant in the USA, why so many people have fundraisers/go bankrupt to find the MEANS for medical care when loved ones are very ill (ALS, cancer, other horrific diseases). I don't think living in the USA guarantees you 24/7 nursing care when you are very ill.

Oh, and I agree that the DOCTOR's life has been very productive



But, to the OP, this disease is not a good one. I hope that it is a mistake that they think your uncle has it. ALS does mimic many diseases. Please keep that in mind. There is hope.

 

[DawnCt1]

I also think his MEANS allows him to have the very best. I am wondering if MEANS are so irrelevant in the USA, why so many people have fundraisers/go bankrupt to find the MEANS for medical care when loved ones are very ill (ALS, cancer, other horrific diseases). I don't think living in the USA guarantees you 24/7 nursing care when you are very ill.

Oh, and I agree that the DOCTOR's life has been very productive



But, to the OP, this disease is not a good one. I hope that it is a mistake that they think your uncle has it. ALS does mimic many diseases. Please keep that in mind. There is hope.

Yes, living in the USA does guarantee you 24.7 care when you are very ill but I do not want to turn this into a debate. I want to reassure the OP that whatever the diagnosis is, there is plenty of room for hope, a productive and happy life, just on different terms and time to spend with family and friends.

 

[hentob]

Yes, living in the USA does guarantee you 24.7 care when you are very ill but I do not want to turn this into a debate. I want to reassure the OP that whatever the diagnosis is, there is plenty of room for hope, a productive and happy life, just on different terms and time to spend with family and friends.

I agree that there is always room for hope.

I am happy that you do not want to turn this into a debate. That is very nice of you

 

[SueM in MN]

Since Dr. Stephen Hawking was brought up, I thought it might be interesting for the OP to see what he has written on his website about his perspective on living with ALS and his feeling when he was first diagnosed.

Whatever the outcome, sending lots of pixie dust to your family for dealing with whatever it turns out he has.

 

[DawnCt1]

Since Dr. Stephen Hawking was brought up, I thought it might be interesting for the OP to see what he has written on his website about his perspective on living with ALS and his feeling when he was first diagnosed.

Whatever the outcome, sending lots of pixie dust to your family for dealing with whatever it turns out he has.

A very good link. No matter how bad things seem at the outset, there is always a reason for optimism. ALS gave him a reason to be driven and be focused. He is the man he is today because of ALS.

 

[hidmickey:myantidrug]

My uncle (actually my mom's uncle but he was still really young) died from it 3 almost 4 years ago. A mix of that and early signs of Alzheimer's. He started regressing very badly. He would kiss anybody around and sometimes forgot names. I loved him dearly but it really was for the best.

I sincerly hope that your uncle is fine and you, your uncle, and family are in my prayers. Best wishes and pixie dust.