Progressing and very worried.

[Gracie]

My husband was dx 2 yrs ago with PLS. Some say yea, some say nay????? Began with clonus of rt foot, Babinsky right knee and right leg weaknes, 2yrs later progression seems onward. My husband now has Babinisky left knee and some clonus left foot. Leg weakness in both legs now and his balance and mobility is terrible. Does this progression seem normal? Sometimes finds a problem with his right thumb and finds it difficult to write. He always had beautiful writing and this is very disturbing to him. He finds now that when the weather is cold and wet out that his legs and knees are very achy and he can hardly get around, he is taking Bacolfin and Celebrex. Life as we knew it is gone now and we are barely coping..... I just got over a bout of Shingles, sure sounds like we are not handeling this too well. As I read the comments that others have with PLS it appears maybe they come in and out of remission, is this true or is it just a constant decline?

Any comments are welcome,
Thanks,
Gracie

[olly]

i am sorry for what you and your husband are going through.
pls is in writing slow progressing and is the case for most of us but a few can progress quicker. from my own experience the first 2yrs were really bad and i was very ill,then for 5yrs my progression slowed down but2yrs ago started to speed up again and has been bad the past6-12 months.
some pls'ers who have had it over 20yrs are still going strong.
mobility/disability can change from day to day or over different periods of time. i do think i definatly have disabling episodes i call attacks like in m.s, this is also quite normal.
you need to make sure any little infections ect are taken care of quickly and properly as a doctor told me anything can make the pls worse and infections can increase the spasms.
just take one day at a time. if your not happy with your neuro find another. if you continue to be worried about his progression( towards als--- has he had a emg?) get him checked out. the first few years with pls and the uncertanty of it are the worst, but you do ajust and learn to cope.
god bless you both.
caroline:)

[Geo]

If youve had Shingles this is a Virus coming out after spending 30- 40 years in your Spine VZV Varicella Zoster Virus. Some call it a POX Virus, Chicken Pox . Makes One wander if a Virus can enter our Motor Cortex and alter the way things Work ????? Now after Many years of dealing with Viruses ,you would think they would have a handle on them ??? I beleive Viruses are the Cause of Cancer also a Virus is 20,000 times smaller than the Head of a Pin , and yes they can penetrate the Blood Brain Barrier where drugs cannot
Other than Alcohol ,Nicotine , Mariwanna ,PCP, Harowin etc . Geo /had PLS 8 years now

[Geo]

I forgot to mention a Virus enters the cell and Mutates or changes to look like human cells so the immune system has a hard time deciphering which is which .this is the case maybe in Arthritis or other destructive diseases the Immune system thinks something is wrong and attacks the body as well . Some Viruses are distructive and kill the cells they enter .
Some just alter the way the cells act . Biological Warfare is carried out using Viruses as well as other things
I hope this enlightens things for you. Geo

[sral]

Gracie,

Is the leg weakness extreme, i.e. can he still walk? If his symptoms began over two years ago in his legs and he can still walk, the progression is not that fast. The disease will eventually move to all parts of the body. I read somewhere that progression to arms after legs is usually 2.5 years for PLS and it's about 2 years for your husband,

[Gracie]

Hello sral,
In response to your question, the leg weakness, Babinsky(kicking back of the knee) and clonus of the right foot all began in July of 2006. Some foot drop began about a year before the knee and he has extreme hyperflexia of both legs and arms. Just within 2 months he has begun Babinsky in left knee, clonus left foot and leg weakness in left and right legs. He can walk but he walks like he is walking on eggs as his balance is very poor. He uses the can constantly but he could topple over if you bumped him. He tires quickly now because everything he attempts to do takes so much energy trying to keep his balance. The right thumb is also effected now. He does have an L4 & L5 mild back discomfort and is being treated with steroid injections and the radio frequency procedure to deaden the nerves near the spine. Neuro surgeon and Neurologist said the back is minor and is a different problem then the PLS. So sad this PLS controls your life and family.

Thanks to everyone that has commented. We are all in the same boat and nobody could ever understand how distressing this disease can be. God Bless you all.

[sral]

Dear Gracie,

I know how hard this disease can be on everyone's life. Although the situation may seem to be controlling your life, think about how much worse it can be... your husband has PLS and after over two years he can still walk.

Wishing you and your family well. Stay STRONG!!

[Gracie]

Thank's sral for the words of encouragement. After I read back my reply I realized I mispelled cane. So too correct the error I must say (he doesn't use the can all day he uses the cane all day) lol, big lol, guess there is something to laugh about after all. Thanks again!:)

[sral]

Gracie,

Don't worry about the typo. I understood what you meant and life is too short to worry about the small things!

[CindyM]

Yep, Gracie. Big LOL, that type!

[kevinw]

Hi Gracie,

Hang in there, I'm sure there are daily activities that are being altered by both of you as you deal with this horrible disease, but try to stay strong for both of you. Tasks become very frustrating when you don't have the flexiblity and energy that you once had, yet in your mind you still feel you can do it all. For instance I was just stripping caulking from a shower to get ready to re-caulk it. I think the project is going to take me long then it ever has before, because when I just went to stand up and take a break, my legs were weak and shaking. In an hour or so I'll go back to it, but for now I need a rest, and in the past I would have been able to continue all day working.

So although it appears that over the last year and a half it really spread to both of my legs (started in my left), I still feel I can be as productive as always. I am just learning that maybe I need to change the pace that I do my projects.

Again hang in there, progression might slow down and he may even have those days that he feels and walks better. But he is a lucky guy to have a wife that is so very concerned and watch out for him.

Bless you and your husband and I hope better days are ahead....you are doing great.

[Gracie]

God Bless everyone in this PLS Support Group. You are all wonderful and certainly are so positive and helpful as we all reach out to one another. As we hit bottom daily you all are always there for encouragement and support. I feel very blessed to be apart of such a wonderful group. Thank you so much! Gracie

[olly]

dear gracie i am so sorry to hear you are sruggling.
can i ask how old your husband is? when was his last emg? was it ok?
if you are worried about the rate of his progression please voice your concerns to his neuro.
i know the first few years are bad it was the same for me i was very ill.
i think when pls hits you when you are a healthy,active person like i was it is like being hit by a thunder bolt and your body can't cope. i know alot in the first few years are like this but on the other hand i know some older ones that have had pls 15-20yrs and are doing alot better. i think eventually as in my case( pls 9yrs) your body learns to adjust.
you have to take things slower and know your limitations.
i was the same as kevinw, taking on projects ect thinking my body was normal only to end up being bedridden and imobile. it has got to the stage were i can't enjoy gardening anymore , i can potter half hour and my bodys had enough.
but i can still walk a short distance with aids and now after 9yrs i have given in and i am getting a powered mobility scooter so i can get out more in the summer for day trips with my family. i don't go on long holidays as they are too much for me and i get very fatigued,symptoms get worse.
i hope your husbands pls will plateau soon, i truley know how hard it is.
god bless
caroline:-D

[Gracie]

Hello Caroline and thank you for your concern. My husband will be 62 in June and he has had three nerve studies done, one by a nerve specialist and the other two by our neuro and a scheduled appt. in June (if the neuro see's too much change he will do another study then) which will then be the 6 month apt. At this point they are calling this PLS because the studies don't show any muscle loss or nerve damage. The MRI's are all clear, spinal tap and blood workups (like all of you haven't heard this before). I think what is so disturbing about this disease is that everyone comes into it in great health. Imagine that, my husband does not take any pills for blood pressure or or anything......his weight is perfect, heart, blood, and he was very lucky to have been so healthy for so long. Then WAM... and in a little over two years he has totaly been changed into an old man (as he puts it). No more golfing, hunting, fishing the streams, limited woodworking and barely walking. We do realize we have been very lucky that this didn't happen at a younger age as we were able to retire and our children have left the nest. I want to share with you a poem I wrote (it kind of gives me an outlet to be able to put my words down on paper). Hope you enjoy this I wrote it for my husband and have it framed on our night table.

I hear his cane tap on the floor
with memories of life before,

When daily chores were done with ease
without the pain of aching knees,

Who knew all those years ago
In youth and wedded bliss,

Thank somewhere down the road of life
We would end up like this,

If I had the chance
To change the past
and start again all new,

I'd take the path
I took before
and live my life with you!

By Gracie

[MtPockets]

Gracie,

I love your poem. Your husband is blessed to have you by his side. I can identify with your husband. I am 61 myself.

I use to be a work-a-holic and a perfectionist. As I progressed with ALS one of the hardest things was to sale my Golf clubs. I use to love to play golf. After they had sat in my garage for over 2 years I finally parted with them.

The next big hurdle came about 3 years later, just last week, when I had to sale my boat and my fishing gear. I enjoyed going fishing with my 15 grandchildren and my 4 children. It finally got to the point I could not be lifted into and out of the boat, and after the boat sat in my driveway for the past year, I finally gave up and sold it.

It seems pieces of my life are just slipping away, one thing at a time. I know before long I will also not be able to use my computer. I do not look forward to this at all since the forum is my extended family and has kept me going these years.

I can totally identify with those who are watching their bodies slowly wither away. It is so hard to bear. All I can do is ask God for the grace and peace to endure until the end.

:cry: I'm sorry for being in such a gloomy mood today.

[Geo]

Al you have echoed what all of us are going through ,i also was a golfer ,live in a gated Golf and Boating 55+ Community where i watch my friends go golfing everyday and see them on the course when driving around and remmember the moments . when i first got this i could not even come close to this or i would break down ,i was also an accomplished water skier . Have to be helped into my friends boats when going with them ,but they dont mind . We now appreciate every minute we get on this Earth . Its just a Damn shame our Medical Community cant get their acts together . Makes one wander if they have a cure for only the very wealthy somewhere ? God Bless ,Geo

[Gracie]

You touch my heart Al and I will keep you in my prayers, thank you for the message as it clearly shows we are not alone in this.

God Bless,
Gracie

[olly]

i loved your poem, you and your husband have something special to treasure.
i was 31yrs and in my prime in tip top health being a athletic person. i loved running and was a competative runner in 800/1500 metres. i also competed in cross country running.
i did weight training also. i miss my old life and like capt al and geo have had to give up alot of things. it is very hard and you have to adjust every now and then.
i have started with bulbar problems, just when i was getting in a comfortable place with my pls.....wham, the bulbar symptoms started and knocked me for six.
we all totally understand,we have been there and sometimes still are.
i would not say your husband can ever get back to how he was but eventually god willing his progression will slow down a bit and you can both learn to adjust and live life more. i hope that is real soon.
god bless you both
caroline:)

[CindyM]

Gracie- your poem is very touching. thank you for sharing it.

And AL- it is OK to be down. I'm still in a bit of a snit myself over something that happened two days ago. I should probably move on and enjoy what is left of the weekend before the rains set in for the rest of the week, the weatherman says. But sometimes we feel discouraged and for very good reason and I think it is OK to wait for that emotion to pass.

[sral]

Caroline,

If you don't mind me asking, you mentioned you started with bulbar symptoms, is it just slower speech or slurred? My mom's symptoms started with bulbar which is awful because speech is so important.

By the way, sorry to hear you were hit with this disease so young ... just 31. It's interesting how often being very athletic and fit has been mentioned by people with motor neuron disease.

[olly]

i did not start with bulbar symptoms it was my legs in the begining.
but about 18mths ago i noticed swollowing problems and this year have developed jaw problems,twitchings and spasms in the face/mouth. my speach is slurred when i am really tired and if my jaw is real bad i have problems articulating words.
geo started with bulbar symptoms.
yes i think its true that any neuro illness tends to strike people who are athletic,hyperactive or workaholics,i was all 3 lol:-D, maybe i should have been a couch potato/lazy sod lol:-D
take care
caroline:-D

[Geo]

Well i have now read that emotions as well as alcohol ,caffeine,nicotine etc can open the BBB Blood Brain Barrier for something to get through . I read an article a while back about Traumatic events and ALZ onset
so people who get excited easily or energy levels high could become vulnerable to this . That Link we all share .Lou Gehrig was an Athlete and very energetic . I would bet the Adrenal Glands have alot to do with it ?? as Adrenaline gets the Neurons going ,(fight or flight theory ) Geo

[Gracie]

Geo I think you are so right on. The common denominator does appear to be good health and a very active person. My husband would work from morning to evening continously moving from going to work all day and then coming home and cutting the grass, fishing, or just projects around the house. I guess that is what makes this disease so hard to wrap yourself around and understand where it is coming from. My husbands mother was a very active person and she had severe dementia the last years of her life, she passed at the age of 85 but her last years were devastating in the decline. Makes you wonder doesn't it? Another sad part of this disease (pls/als) is the fact that physicians are so (undirectional) is the only word I come up with. Wait and see is a rediculous unresolved answer. I feel we have an excellant neuro, however, like everyone else we want answers and for heavens sake lets be able too if not cure the problem at least maybe stop or slow down the side effects. Our pain management doctor mentioned that our neuro would find this case (my husband) very interesting and would be a challange for the neuro, okay well then lets find a cure and research, research, research. My husband would be open to any research that would help find an answer and cure, waiting for the autopsy is not exceptable! Well........I feel some better, lol, sorry for the speech but sometimes the frustration and listening to the ticking clock is just hard to take. WE ALL WANT A CURE YESTERDAY!

Gracie

[sral]

I tend to agree too. My mom was a ball of fire all her life until this disease struck ... from talking a thousand miles a minute to walking like a speed walker

Hope they find a cure fast because I'm just like her

[MtPockets]

I use to be a on the track team and Pole Vaulted and high jumped. I had a full scholarship to college doing the same. I think I fell on my head from 13 feet in the air, way too many times.

The in 1989 I was knocked out when my head hit the ceiling in a small corporate jet that fell 1000 feet after the pilot took off in the prop wash of a 747 in Alaska.

Too many hits to the head makes AL a dull boy. :-D

Maybe that is why I am aby-normal.

[olly]

you may be aby-normal but we love you and would not want you any other way:-D
god bless
caroline