Status
Not open for further replies.

Gracie

Active member
Joined
Oct 28, 2007
Messages
63
Diagnosis
09/2007
Country
US
State
PA
City
Altoona
Hi Everyone hope you all are doing okay.Well we had our 6 month visit with the neurologist yesterday. I was scared because after our last visit my husband showed weakness in the right hand and doc said it was muscle atrophy (which I thought couldn't be good). I told you all before that my husband had clonus and right knee babinsky, after 2 yrs he progressed to right and left feet clonus and right and left knee babinsky. His balance was getting worse and he looked to me like he was progressing daily. I have done an extreme amount of research and from my last post I told you all what I was doing trying to prevent Glutamate from MSGs and Nitric Oxcide from a unbalance of Lysine and Arginine in his food. I asked our neuro if he thought possibly this could be my husbands problem and he said there is a lot of research being done on Glutamate and Nitric Oxide and how it can kill the neurons. I told him this could be the answer for people who do not tolerate for what ever the reason (cellular makeup or dna) this chemical that preservatives accumulate in the brain and destroy. I am convinced it is a factor. I prepare everything (homemade bread, rolls, ketsup, mayonaize, ice cream, candy, cakes) and nothing goes in my husbands mouth unless I know what it is. Well he seems to be doing better. The neuro said he had 10 people diagnosed with PLS. Three have died, 6 changed to ALS and my husband has stayed the same. He seemed to be on a spiral and now he is going the other way. We have been bike riding again and he seems so much stronger. I am still detoxing him with the ionic detox foot bath and detoxing him with the herbal tea Flora Essence. This may or may not be the answer but it can't hurt and thank god we are retired because it is a lot of work. I am canning today and I am very busy but I just wanted to check in and tell you all that we are still hanging in there. The doc's have no answer and at least this is a way I can do something about it. Gracie
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
Gracie,

I'm glad to hear the good news. Let's hope that things continue this way.

By the way, if your husband is still able to bike ride this is definitely very good. What I've learned is that how each person interprets rate of progression is totally subjective. What you have defined and thought of as fast progression may actually be snail pace compared to others and vice versa. My mom's balance is so that she can't walk unassisted yet alone ride a two wheel bike.

Good Luck to you and your husband. Wishing you well!
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
hi gracie

it is wonderfull to hear from you and especially how well your husband is doing.
i am really pleased for you both that he his doing well.
i think you are a wonderfull example to others with the dedication you have in looking after your husband,tell him he is very lucky to have you.
like sral said,if he can still ride a bike he is doing well.
i can not even walk in a co-ordinated way and i am lethal with a shopping trolly,goodness knows what i would be like on a bike if i had the strength to move the pedals and balance.
i do agree with the glutamate,they have thought for a long time it could be the cause of many degenerative deseases.
i do know i have a glutamate intolorance,had it all my life.
certain breads,processed foods and chinese takeaway.
i do eat mostly fresh food and organic,but its hard to eliminate all processed foods.
i hope your husband continues to do well,it looks promising.
god bless you both and keep us updated.
take good care.
caroline:-D
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
OLLY ,I like Your new Kitty . He or She ? Ive always wander about MSG In our food ? Mono/sodium Glutamate . Also you can get Food that is GMO free Genetically Modified Organisms . Most Corn and wheat is
GMO . They have Genetically Modified them for diseases(growing ) and such .This is why so Much Greenway in stores. None of that . MSG is added to food for flavor "they say " Geo
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
By the way I forgot to mention about the PLS states the neuro provided you Gracie. They are not very promising, i.e. 3 out 10 died, 6 turned into ALS and 1 is still PLS. I don't think these are common stats. It's awful that he would tell you these stats. My mom's neuro is so kind and sympathetic. He would never just come out and provide such statistics. Let's hope this is not the norm for PLS!
 

Gracie

Active member
Joined
Oct 28, 2007
Messages
63
Diagnosis
09/2007
Country
US
State
PA
City
Altoona
Yes sral I agree that sometimes the medical profession is very harsh. I remember the first time we went to this the neuro and he diagnosed ALS after his physical exam. He told us that he would always be straight with us and tell us everything he was thinking. Believe me he is lucky I didn't fall off my chair as I knew what ALS was but my husband did not. I had a medical transcription business for several years transcribing doctors notes. Then of course after the emg he then said PLS. When we saw the neuro end of February of this year my husband had fallen several times and twice he fell off the bike. I then said no more bike, but he feels so much better and we tried the bike last week twice. He has trouble balancing to get on and off so I stand with him until he mounts the bike and before he gets off I ride ahead stop my bike and hold it for him. When he tries to walk after the ride he high steps and it makes me nervous but I watch him very carefully guess that is why when he falls I fall. I love him very much and what ever it takes I will be there, if he never gets worse or completely better that is okay maybe I can keep him going long enough until the good Lord takes us together. Gracie
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
Gracie,

That's great that all your hard work is paying off, your husband is a very lucky man to have you.
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
Gracie,

Have faith that he will be there for a long time. Many pALS and PLSers are living much longer with the disease.

By the way what does high stepping mean?

As for bike riding, as I was driving into work this morning I saw an older lady riding a 3 wheeler. It is totally stable and does not require balance. It's GREAT! My mom does the stationary bike which I guess is similar but lacks the fresh air and nice outdoor scenic view.

Have a wonderful day!
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
from medical sites the stastistics are around half of pls patients progress to als.
if after 5yrs there are no lmn signs/symptoms the prognosis is good.
life expectancey is around 20-25yrs(depending on the medical site you are looking at and an average rate of progression) ,so in someone 50yrs or over this would make it a normal life expectancey.
in younger(under 40yrs) the life expectancey would be below normal.

msg is also used as a thickening agent in sauces and gravey.
my neuro always tells his patients the importance of a healthy diet and drinking enough water.
i completely changed my diet some years ago and think it has helped with my general health,thus helping my body to deal with mnd.

take good care.
caroline:-D
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
hi geo

thankyou for your kind words.
it is a photo of olly(oliver) my 13yr old baby,he died in oct 07 a week before my diagnosed.
he had been ill all that year with bladder/kidney problems,going through alot of operations but sadly they could do no more to help him.
all my photo's of him was before i got my digital camera.
when he died i had my favourite photos enlarged and framed.
i took the photos out of the frames(i was getting too much reflection from the glass)
and took pictures of them with my digital camera,so then i could put them on my computer.
if you look on my profile there is another one of him and some of oscar my 3yr old,also photos of my garden.
did you get any bad weather from the hurricane?
today we have gales and heavy rain,winter is on its way.
take good care.
caroline:-D
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Hannas Going By ,On the East Coast of Florida ,Getting some breezes of her ,But thats it . On the other hand Ike will be something else . Animals are a Great support System . They Love you no matter what or how you feel . My Baby is sleeping on the Patio ,shes my buddy all day when Connie is at work . Watches over me LOL . Pets are good for anyone who is Ill . Geo
 

Gracie

Active member
Joined
Oct 28, 2007
Messages
63
Diagnosis
09/2007
Country
US
State
PA
City
Altoona
Thanks to all of you for your kind words of incouragement. SRAL (high stepping) probably isn't a correct definition but you know when you take a step and your legs are stiff and rather straight and trying to keep your balance well he sort of will bring his legs up higher than usual as if he was making a step up. It is really hard to describe. Hope everyone out there has a beautiful weekend and be kind to one an other. Gracie
 

hopingforthebest

Distinguished member
Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
US
State
NJ
City
Mays Landing
keep up the good work!

Gracie,


Sounds like you got his diet working well for him. Will keep checking on your posts!

You are a great wife!
 
Status
Not open for further replies.
Top