Re: PLS type 2

[Guest guest]

Hello, :

My spouse, Bettie Jo, is PLS Type 2. There are a number of others in

the group, but I will let them identify themselves. Bettie Jo is not a

member of PLS-FRIENDS, because the quantity of messages is more

that she wants to handle. I will forward your message to her and she

can then answer direct. Otherwise, I am on the list and will respond

to any comments about Type 2. Do you know if Dr. Levy's PLS

Newsletter?

Don

[Guest guest]

yes...we get his newsletter. And it is my husband who has PLS. He has

had it for about 3 yrs now.

[Guest guest]

kelly,what is type 2?

.

[Guest guest]

from what we know..Type 2 is really rare. It is a faster progressing type

of PLS.

My husband has had PLS for a little over 3 yrs, and is already almost

wheelchair bound. I have also been told that it can be fatal....cause of the

lack of ability to cough and clear lungs.

[Guest guest]

Hi .........my hubby (Glen) has type 2.........although our doctor has not

distinguished to us the different types. We do know his symptoms are as

described in the group as Type 2. Glen cannot manage the puter, so depends on

me to do the communication. At present, he depends totally on his elec. cart

for outside of the house, and a walker for inside. His legs and speech have

worsened slowly over the last 5 years. Glen takes Baclofen, Atrofin (a puffer)

and Prozac...and drinks tonic

water daily. Hope this helps.........and if you like we can further " talk " on

ICQ...

just let me know ok?

Carol

PRRose5@... wrote:

> HI

>

> I am looking for anyone who has Type 2 PLS..seems like everyone has type 1.

> Would love to be abel to chat with someone that has type 2.

>

> Thanks... Rose

>

> ---------------------------

[Guest guest]

kelly,

how do u tell the difference tween 1 'n 2? didn't know there was a scale

for pls. don burge

[Guest guest]

,

I'm not sure which type I have. Mine started on my left side, arm and leg,

and seems to be progressing across my body. This is apparently unusual, but

then I've always been a trendsetter!!

Jo Ann

[Guest guest]

[This message is not in displayable format]

[Guest guest]

My dad seems to have a mixture of symptoms from type one and type 2 ??? He's

had pls for 6 years, his deterioration appears quite slow - although he may

not agree. Sonya

Re: PLS type 2

>

>

> Hi .........my hubby (Glen) has type 2.........although our doctor

has not

> distinguished to us the different types. We do know his symptoms are as

> described in the group as Type 2. Glen cannot manage the puter, so

depends on

> me to do the communication. At present, he depends totally on his elec.

cart

> for outside of the house, and a walker for inside. His legs and speech

have

> worsened slowly over the last 5 years. Glen takes Baclofen, Atrofin (a

puffer)

> and Prozac...and drinks tonic

> water daily. Hope this helps.........and if you like we can further

" talk " on

> ICQ...

> just let me know ok?

> Carol

>

> PRRose5@... wrote:

>

> > HI

> >

> > I am looking for anyone who has Type 2 PLS..seems like everyone has type

1.

> > Would love to be abel to chat with someone that has type 2.

> >

> > Thanks... Rose

> >

> > ---------------------------

[Guest guest]

Mike

Do you have PLS type 2?

I will ask if he thought he was under stress or not.

Thanks.............................

[Guest guest]

Don

According to a web site I read, my husbands Dr and Levy....this what

I gathered to be the difference.

PLS is a nuerological disoreder characterized by a gradual development of

muscle weakness and stiffness. It strikes involuntary muscles nd usually

begins in the legs...type 1

Occasionally PLS may begin in the tongue or hands...type 2.....Type one never

has an effect on the speech. If you are diagnosised with PLS..and have no

speech symptoms for 3 yrs, you have type1.....Dr Levy feels type 2 falls

between type 1 PLS and ALS. People that are diagnosised with ALS and have

out lived their epected life span..most likely have PLS type 2.

My husbands started in his hands...he was diagnosed with " Trigger finger " it

was a yr later that his walking became weak, and he was tested at

Mayo.....and was diagnosed with PLS. in the past 2 yrs, he has gone from a

cane to a walker full time, and part time in his wheel chair. He raised our

bed 8 inches higher, (I have to run to get in haha) and he has a lift

chair. His speech is still clear, but very slow. He makes a lot of noise

when he swallows, but hasn't choked on any food as of yet. His Dr has

mentioned that he would need a feeding tube when it gets worse, so as not to

choke. He still works full time, part of the time at home. And against

everyone's beliefs...he still drives a 5 speed.

I was asked if he was under any stress 6 mo to a yr before his symptoms

started, and he didn't seem to think so, however, he has a stressful

job...and it was just part of his everyday life.

I would love to talk to others who have type2..as it seems to be different

from type 1 in many ways. I have enjoyed reading all of the mail I

get.......makes me feel like I am not alone in all of this.

[Guest guest]

Hi ,

As you'll soon find out, you're far from being alone. I'm 54 and was

diagnosed at Mayo/Rochester in Dec. 1997. My symptoms began with slow and

slurred speech about 6 years ago. I was an avid tennis player and was still

playing a few times a week at the time of my diagnosis although my reaction

time had slowed considerably. The Mayo doctor said I'd know when I had to

stop playing and he was right and that was 1-1/2 years ago. My keyboard

skills are still fine although somewhat slower but doesn't create a problem.

My voice continued to get hoarse and weak sounding and I would choke. My

speech problems have pretty much gone away. I started Dr. Prahl's drugs in

July 1999 and my voice " came back " . My walking times have improved by 18%

(if you know Dr. Prahl's therapy you'll know what I'm talking about, if not,

you won't). My walking is still pretty good but my balance is becoming more

of a challenge which could be due to the colder weather.

One thing we, in this support group, have talked about in length is the

difficulty of walking in cold weather due to the fact that it makes our

muscles contract. Also, uncontrollable emotions such as laughing

inappropriately and crying (we all really " love " that one). And, not to be

forgotten, the exaggerated reflexes, meaning we startle easily usually

tossing our coffee, or whatever, whenever the phone rings, etc. So if these

" qualities " have shown up--it's all part of the disease.

Keep your head up--but watch your step at the same time :-)

Gentner

[Guest guest]

Carol,is the tonic helping Glenn with the cramping?

.

[Guest guest]

Hi , I too must be type 2 and would love to talk to you about it one day

soon. If I let it, the ultimate outcome (and I don't mean death) would scare

me to death. I just am trusting in the Lord and waiting on my miracle.

Jeanne Ann

[Guest guest]

JoAnn, maybe it's just a Texas thing- mine's going the same way- Do you do

the " royal wave " with your left hand too? That's what we call it at our

house since I can't wave my wrist side to side or up and down so the wave

is a slow regal side to side elbow swing- Queen and Miss America

look out! Lavon

At 01:10 PM 01/08/2000 EST, you wrote:

> From: JoAnnSipes@...

>

> ,

> Mine started on my left side, arm and leg,

> This is apparently unusual, but

> then I've always been a trendsetter!!

> Jo Ann

>

>

>Please click above to support our sponsor

>

>

[Guest guest]

[This message is not in displayable format]

[Guest guest]

Mike, I also have asthma and when I was taking Vanceril but it made my

throat scratchy. Check with your doc about changing your inhaled steroid.

I use Aerobid which has had no side effects for me (I also like the menthol

taste- if you try it don't get the plain one- it tastes horrible!). Brands

work just as well and your doc would rather have you compliant and

comfortable. Lavon

At 10:10 PM 01/08/2000 -0500, you wrote:

>From: <>

>

> . I must have PLS type 1. Only my legs and mind (smile) are

>affected. My throat is a little scratchy, but I believe that is due to the

>asthma inhaler I use 2X daily.

[Guest guest]

thanks kelly. i am a type 2 then. my onset was in '89 w/slurred speech.

went to mayo in '91....no dx. i was finally dxed at the u of ky hosp. in

'93 w/pls. at present, i'm in a power chair and caretaker dependent. still

take food by mouth [very carefully] although i have a g-tube for future use

and liquid intake. fine motor control is mostly gone. 30 min. to type this.

hospice comes m-f for noon meal and i pay an aide to shower me m-f. don

[Guest guest]

Hi ........yes thanks......I switched brands (was using schweppes) and

try to find better tasting ones. He says it does help at night - usually

he is awake every other hour with cramping. Baclofen has not helped that

either. Carol C

C828@... wrote:

> From: C828@...

>

> Carol,is the tonic helping Glenn with the cramping?

> .

>

> ---------------------------

[Guest guest]

G'day ,

I'm a definite Type 2. I haven't done much posting to PLS-Friends for

about nine months so be warned I seem to have made up for that in one

hit! 8-)

Diagnosed May 93 at the age of 38 after about a year to 18 months of

slowing reactions and increasing stiffness in my legs, forearms and

hands, most noticeable initially on my right side. Diagnosis was very

quick compared to most people I have read of. Mentioned my stiffness

etc in a rare visit to my GP for something else. He took one good look

at my gait, did some simple motor tests and sent me straight to a

neuro. Must mention that from talking to other people my GP is very

observant and good at picking things up. Only a few weeks before that I

had been to a sports doctor after I hurt my knee in a fall while jogging

(I thought my stiffness was due to lack of exercise so was attemting to

remedy that). I told the sports doctor about my stiffness etc and he

said there was nothing wrong with me - ha!!

The neuro did a similar but more comprehensive series of motor tests to

those performed by my GP and sent me off for an MRI. The MRI showed

abnormalities (gliosis/edema) in the corticospinal tract so that was it

- an immediate diagnosis of PLS. From other peoples' stories it seems

that it is rare in PLS for anything to show on an MRI - has anyone else

had anything show on an MRI? Another person from Australia who I 'met'

through PLS-Friends was also diagnosed very quickly with PLS although

her MRI was clear. Maybe the spectre of litigation is less obvious here

so neuros are prepared to commit to a diagnosis more quickly??

Another neuro (supposedly the best in Melbourne) I then saw for a second

opinion agreed with the diagnosis of PLS though in a subsequent visit

two years later said there was a small percentage of doubt, but couldn't

really offer other options. My current neuro thinks it is most likely

PLS though another neuro I see as part of a research study he is doing

just refers to it as a form of motor neurone disease. (Mind you because

they have nothing to really offer I only visit a neuro about every two

years.) I do have some minor ALS type symptons as well and that fits

with type 2 PLS probably falling somewhere between type 1 PLS and ALS.

There is some muscle wasting between the thumb and first finger on both

hands but that has basically not changed much for about four years.

Occasionally I also get fasciculations (muscle twitches) but they are

extremely rare now and to me they are an indication of a big negative

eg. overdoing something, unhealthy food etc.

Back then I wasn't on the internet so tried a few medical libraries in

an effort to find out more about PLS but had very little success so

lived in an informational vacuum feeling like I was the only one in the

world with PLS. Thank God for things now like PLS-Friends, 's PLS

site and Joe's newsletter!! One of the neuros had mentioned PLS as

being 'like' MS so with nothing better to do I started reading stories

by people who had either reversed or at least stopped the progression of

their MS. This I feel was good for me as it convinced me to clean up my

diet, something which I feel has been very beneficial to me (more

later).

By mid 94 I was often using a cane and had started noticing some speech

problems which were not obvious to others. At the end of 95 I was

having more major problems walking and my speech had suddenly

deteriorated. The rapid decline in my speech in particular I attribute

to overdoing a stint of about six weeks on OPC antioxidants. I have

subsequently read that taking a heavy load of OPC's can actually cause

more harm than good in some people and I definitely feel that was the

case with me. I still take a SMALL dose of OPC's as part of my

antioxidant regimen.

In December 95 I began speech therapy and the physical therapists at the

same place said I should be using a walking frame so organised one for

me. I am ashamed to say that my foolish pride prevented me from using

the walker full time until a year later but now I can only reiterate the

sentiments expressed by others recently - use a walker if you need

one!! Fortunately in that time I only had one bad fall but that would

have been prevented by the walker and the walker certainly increased my

independence and decreased my fear of falling.

By mid 1997 I could not really walk without the walker and needed a

wheelchair for things like the mall, picture theatres etc. My speech

was fairly poor, a mixture of poor formation of sounds by my mouth and

tongue and tenseness in my diaphragm causing me to have problems

actually getting words started, so between words I always had to put one

or more 'ummms' to try to keep the flow going. I was also having

problems with liquids and would occasionally end up in a coughing fit

after fluid went down the wrong way or 'caught' in my throat, though I

had no problems with solids.

By that time I had begun to feel that my rate of progression had begun

to slow and this I attribute to a much healthier diet and attempts to

minimise stress on my myself. About that time I first came across Steve

Shackel's excellent website (http://www.goulburn.net.au/~shack/ if you

haven't seen it) on antioxidants and motor neurone disease, so rather

than haphazardly just taking a few antioxidants here and there I made a

serious committment to using them. My previous negative experience with

OPC's scared me off taking large quantities of any one thing so now I

take smaller quantities of a range of different antioxidants, some of

which are unavailable here so I order them from the States via the

internet.

About six months later my rate of progression basically came to a halt

and in fact I feel that in some respects I actually improved a small

amount. Now, about two and a half years later I still feel about the

same physically though over that time my speech has very, very slowly

worsened from just plain bad to bloody terrible! Even my wife and two

daughters (16 and 13) have trouble working out a lot of what I try to

say now. Still, I feel that the antioxidants, better diet and less

stress have all played a part in keeping me almost on a plateau for the

past two or more years after an initial period of years of relatively

fast progression compared to many people.

For me by far the most frustrating aspect of my PLS is the loss of

speech as it can tend to be isolating and magnifies all the other

difficulties and potential problems of PLS. If I have a fall I can't

really call out to anyone further than about ten yards away and even if

they hear me I have great difficulty communicating what I need. It's

virtually impossible with strangers. As with many other PLSers I also

have 'emotional liability' i.e. heightened and/or inappropriate

emotional responses to various situations. In the worst case it can

lead to things like laughing out loud at funerals etc. but I don't seem

to have it that badly.

Fortunately about four years before my diagnosis I changed careers and

became a computer programmer, so I am still able to work full time. I

have the option of working from home if I need to though I virtually

never do. Work provides me with a mental challenge and I enjoy the

company of the people I work with. About five years ago I had to sell

my manual car and get an automatic as I found (after rear ending someone

at 10 mph - sorry mate!) that I couldn't reliably get my right foot to

hit the brake pedal in an emergency (fortunately it was a low speed

drama which finally brought the point home to me). A similar situation

even with the big brake pedal in the automatic about a year late made me

switch to driving with one foot working the accelerator and the other

permanently hovering just above the brake. It's a bit uncomfortable at

first but works well.

Well, in a big nutshell that's me and type 2 PLS. Hope it gives you

some more insight and didn't send you to sleep too quickly! 8-)

PRRose5@... wrote:

>

> HI

>

> I am looking for anyone who has Type 2 PLS..seems like everyone has type 1.

> Would love to be abel to chat with someone that has type 2.

>

> Thanks... Rose

>

> ---------------------------

[Guest guest]

Dear ,

I am also PLS type 2. PLS type 1 is legs only. Mine started in my legs,

then hands and arms, and has progressed to vocal cords and swallowing. It

has not yet affected my ability to form words. My first symptoms (having

trouble walking in a straight line) began in about August 1996. I am now

totally dependent on a walker. I am still working 40 hrs/wk but don't know

how long I'll be able to keep it up.

Roy s

>HI

>

>I am looking for anyone who has Type 2 PLS..seems like everyone has type 1.

>Would love to be abel to chat with someone that has type 2.

>

>Thanks... Rose

>

>---------------------------