very fast progression

[jessB]

So just over a month ago I posted about my Dad being diagnosed with ALS. He has since seen an ALS specialist (two actually) and it has been confirmed unfortunately. It is not west nile virus or lymes disease as we hoped.
I went to visit my family for 3 weeks in November, and when I got there he was walking with a cane and sometimes without help just around the house. A week later it was with a cane always and sometimes a walker. And a week after that it was with a walker and wheelchair!
I can't believe how fast this is happening! My parents had a railing installed for the two steps from the garage to the house and by he time they were installed he was no longer able to grip the railing without assistance.
He was initially given exercises to do before he saw the ALS specialist, but the ALS specialist told him to stop because she described his muscles as a glass of water, that only has so much in it, and once it is gone, it is gone permanently. She said he has a particularly agressive form of ALS, and was put on the typical medication (I am drawing a blank on the name). He is also going to try Lithium, which is experimental, but he is willing to try anything at this point.

Is this typical in any way to progress so fast? Can anyone estimate how long he has left at this rate? I know no one has a crystal ball, but the doctor says in this form it doesn't typically stop at any point. Could he have years yet? I'm probably asking too much, but any input is greatly appreciated.

 

[brendapals]

hey jessB,
I'm so sorry for your dad, and your family as well. Unfortunately, there is no certain blueprint for those of us with ALS. It is like looking at a lot of snowflakes-none of them are the same.

My most important help to share with you is to please, please take every opportunity to enjoy your dad, and see that he has the assistance to live life to the fullest of his capability.

And no, you're not asking too much, you are full of questions, which is understandable, this is your father and you want to learn all you can! Sounds like you are a wonderful support for your dad and this forum will help you so much in learning more and more every day.

Hope I helped a little bit, keep us posted,
Never give up,
Never let up,
Never lose faith,
brenda

 

[jessB]

thank you Brenda, this is so incredibly hard to deal with. It feels like it has to be a bad dream that we are waiting to awake from. It makes it hard for me too because I live 17 hours away. But we are now trying to live in the moment, and enjoy each day we spend as a family. Thanks for the support.

 

[rose]

Jess, sometimes people will have a lot of changes, and then plateau for a period of time. You have every reason to hope this will happen with your dad, but not to expect that it will ~ just that it can.

I'm so sorry you're having to deal with this, but I'm sure your dad and family know how much you love him, because it shows in your posts here on the forum.

take care,

 

[jessB]

thanks Rose, words of support and encouragement mean more to me than you could even know. thank you so much.

 

[shrimpbox73]

How Fast with Frontotemporal Dementia?

My husband got the final diagnosed on Wed. ALS with frontotemporal dementia.I don't know what to expect and how fast.Does this mean he will not know or remember me? The nurse said it will be harder on me because he might not realize everything thats happening.Has anyone known anyone with this added bonus! If I was not a mess already this is so overwhelming.The dr.feels he is at the 2year mark.He is in a power wheelchair,hospital bed.He hands are starting to go.He can't write or hold a fork.I HATE THIS DISEASE! Any comments would be helpful.Thank You all.:wink:

 

[BethU]

Shrimpbox ... I'm so sorry for your husband's diagnosed. FTD seems like an enormous additional burden. Hopefully, you husband's neuros will be able to help both conditions with medication.

As to what to expect: I think I have the same thing as your husband, but have not been diagnosed with FTD, so all I can share is what I have read on the Internet, which is NOT the most reliable source of information.

My reading has indicated that FTD does not affect the memory. so he will continue to recognize you. (FTD is a very different animal from Alzheimers) There are two types, depending on the location, right or left side of the brain. One type affects language skills ... not big ones to worry about, just annoying issues like sometimes not recognizing common words in print, or not being able to come up with a word you're trying to think of. Also affected is behavior ... your husband may say or do inappropriate things at the wrong place or time. He may become angry or hostile.

The caretaking will be stressful, so please make plans to get some time for yourself away from the situation. Make sure you get enough rest and nutrition.

Best wishes ...

 

[taratune]

Hello,

My brother has also been going down fast. He was diagnosed in February and started off using a cane that he borrowed from my father. He has had a few fast slides since then. His legs and trunk muscles are gone. He has also lost his shoulder muscles. He can still use his hands and forearms. He is experiencing a lot of pain in his back. His doctor says that this rapid progression is not consistent with ALS but he does not know what it is. He thought maybe a Mitochondrial disease since his biopsy has a few weird things on it and his L-Carnitine levels are low......but the Dr. says the fast progression is not typical of Mito disease either.

My brother experiences pain when he sits or lays on his back so he just lays in his bed on his stomach now. We can't even get him to a Doctors appt. He is in the hospital right now for them to run a few more tests. He had to be taken there by ambulance so he could lay on his stomach. I think we will have to find a nursing home now as it takes 3 or 4 people move him.

I attended a lecture by a Dr. Garth Nicholson this weekend and he said that he thinks that when you see a fast progression of neurodegenerative diseases and even cancer that he suspects that there may be an underlying infection that does not show up in the usual way because it bypasses the immune system.

I spoke with my brothers doctor yesterday and he is reading up on this but would not start my brother on any antibiotics. At this point I can't imagine why they wouldn't want to try anything. I don't see how it could hurt to give him some anti viral or antibiotic to see if it helped. They haven't given my brother any medications to treat his illness....only some pain meds, anti-inflamatory meds etc.

It seems that they would be willing to try something? This is so hard. Most of the doctors seem to have just written him off.

It does make it a bit easier to have a forum like this. Thank you all for "being there" for us.

Peace,
Tara

 

[ccsam15]

With regards to the jessb comment about her father, my mother went thru the same thing! It progressed VERY quickly. Within one month after diagnosis she was no longer able to walk, feed or clean herself. She was only diagonsed 6 months before she passed. The only advice I have to offer is try to make him feel as comfortable as possible and enjoy everyday you have with him!
Take care!

 

[linray]

Shrimpbox
My heart goes out to you. Hang in there. Hope to see you at WellSpouse.
Lin

 

[laurel]

Antibiotics and bacterial infection

Hello,

My brother has also been going down fast. He was diagnosed in February and started off using a cane that he borrowed from my father. He has had a few fast slides since then. His legs and trunk muscles are gone. He has also lost his shoulder muscles. He can still use his hands and forearms. He is experiencing a lot of pain in his back. His doctor says that this rapid progression is not consistent with ALS but he does not know what it is. He thought maybe a Mitochondrial disease since his biopsy has a few weird things on it and his L-Carnitine levels are low......but the Dr. says the fast progression is not typical of Mito disease either.

My brother experiences pain when he sits or lays on his back so he just lays in his bed on his stomach now. We can't even get him to a Doctors appt. He is in the hospital right now for them to run a few more tests. He had to be taken there by ambulance so he could lay on his stomach. I think we will have to find a nursing home now as it takes 3 or 4 people move him.

I attended a lecture by a Dr. Garth Nicholson this weekend and he said that he thinks that when you see a fast progression of neurodegenerative diseases and even cancer that he suspects that there may be an underlying infection that does not show up in the usual way because it bypasses the immune system.

I spoke with my brothers doctor yesterday and he is reading up on this but would not start my brother on any antibiotics. At this point I can't imagine why they wouldn't want to try anything. I don't see how it could hurt to give him some anti viral or antibiotic to see if it helped. They haven't given my brother any medications to treat his illness....only some pain meds, anti-inflamatory meds etc.

It seems that they would be willing to try something? This is so hard. Most of the doctors seem to have just written him off.

It does make it a bit easier to have a forum like this. Thank you all for "being there" for us.

Peace,
Tara

Hi Tara,
I have done lots of reading about sub clinical infections as being the possible culprit for many diseases--in particular autoimmune diseases. There is increasing evidence that many people may harbor infection such as myoplasm, campylobacter and that the body may react to fight these infections with an over active reaction resulting in some of these diseases. I am like you and wonder why antibiotics aren't tried when a person has nothing to lose. Years ago I used to listen to Dr. Gabe Mirkin on the radio and he was a forerunner in believing that ulcers were caused by a bacteria i.e. helicobacter and now antibiotics are a first line treatment for ulcers. He also has been a forerunner in using antibiotics for rheumatoid arthritis. Recent clinical trial results out of the Universities of Louisiana and Calgary were showing benefit of doxycycline with MS. There are papers on doxycycline and osteoarthritis. As a horse owner, I have read recent success with doxycycline and arthritis and laminitis in horses.

Being a wee bit cynical I think many of the drug trials are funded by the big drug companies with copy rights on the expensive drugs like some of the immunosuppressants. Doxycycline is cheap and has few serious side effects so you see less interest in the research. I am with you in thinking that antibiotics and anti viral drugs are things that should be tried with people with diseases like ALS.

I would suggest that you be a squeaky wheel with your brother's neurologist concerning antibiotics and anti virals. Take in as much literature as you can find. As long as probiotics are taken with the antibiotics, the problem of all good bacteria in the gut being killed will be dealt with. My hubby has CIDP and had a differential diagnosis of ALS. CIDP is autoimmune so I am in the process of researching antibiotics for him. But I know dealing with neurologists with their own treatment preferences can be difficult.
Good luck and I am very sorry about your brother. Just to add, since he has an unusual presentation or fast progression with perplexy from the doctor, one would also want to discuss the use of corticosteroids as a trial. As you say he has nothing to lose and lots to gain.
Laurel

 

[taratune]

infection and ALS

Laurel,

Thank you so much for chiming in on the need to try treatment for possible infectious comorbidities. I have sent two of my brother's doctors some of the medical reports that suggest infectious process. I am hoping that they will at least run a few tests to see if he has an infection.

I checked out a little more of the information on the site. They have information on how to get tested for infection and I am wondering if anyone who posts here has heard of them? I am also wondering why one has to go to a special lab to have a test to see if one has an infection? I'm thinking that any lab should be able to test for infection.

I am also wondering how they tell if you have ALS or CIDP?

thanks so much,
Tara

 

[laurel]

Hi Tara,
Testing for most diseases is pretty complex and is often based on multiple tests and observations. CIDP relies on EMG, Nerve conduction, Lumber pucture, and a certain number have certain elevation of certain antibodies. They do the same tests for ALS. Also often muscle biopsy is done. My husband had blood tests done by Athena Labs in the US (we are in Canada) and the cost was $1500. I have not heard of the lab you mentioned. I think many of the tests to determine subclinical infections are very costly and are perhaps hard to isolate. I speculate that is why there are doctors out there who will prescribe antibiotics without the testing.
Laurel

 

[aherman]

JessB So sorry to hear the news. the meds that I was started on is Riluzole which I am told is the only med at this time. I am also in the middle of a double blind study at Johns Hopkins in Baltimore for a new drug. Try to read as much as you can and enjoy all the time you have with your loved one. aherman

 

[bigstu]

Hi all, my first post on this thread so let me Introduce myself. I live in the UK and my 77 year old Father was recently Diagnosed with MND (approx 4 weeks ago) Prior to the diagnosis he lost the ability to grip in one of his hands and was a bit shaky on his feat. Anyway I saw him last weekend and he has deteriated so quickly. He has lost a lot of weight and needs help walking. My Dad has always been a big tall proud man and seeing him like this broke my heart. I stumbled across this forum whilst looking for some information on MND so am hoping I can take some comfort from everyone else here. I guess I have some questions like how much longer does he have but it looks like there isn't a definitive answer to this. Any advice on what I can do my Dad would be greatly appreciated