New member

[chrisroski]

Hi I am new to this forum. I was diagnosed in January with Primary Lateral Sclerosis. It has greatly affected my speech to the point that you can barely understand me sometimes. Eating is
not too bad, just have to cut in small pieces and eat very slowly, however, liquids seems to be more difficult, coming out my mouth & sometimes my nose. I still have motion in my arms and legs. I was put on Rilulex to slow the progession down, but it is not agreeing with me to well.
I have episodes of severe crying and fatigue and get very depressed. I know that this is going to get worse and don't know what I will do when I can't talk anymore. Does anyone know what devices there are for speech problems & how do you pay for these things. My family has been very supportive, but I know it will get harder on them. I hope that this forum will help, cause typing is really my only means of communication

 

[momap53]

Welcome Chris! So sorry you've had to join us.
Thin liquids are problematic, but there are thickening agents available. Talk to your speech therapist about positioning maneuvers you can make to make swallowing a bit easier(like tucking your chin down as you swallow)
Neudexta is a new drug that can help with the emotional lability that you are experiencing.
Review the monograph that came with your Rilutec. Try taking the medicine with food. Do a search in the archives to see how others are dealing with problems they are experiencing with the
med.
Join a local support group. Check the archives for info on communication devices.
You doc should evaluate and prescribe a unit that will meet your needs. Insurance may pay for it.
Good luck to you and let us know how we can help.
Ask your physician about prescribing an antidepressant. They really can help.

 

[EGBAR]

welcome, this is a good group of folks, sorry you had to join but glad you found us.

 

[old dog]

I have a computer program called "Talk For Me." If I remember correctly, it cost about $85. It is quite easy to use--just type in what you want to say and hit a button called, "speak input." Commonly used phrases can also be set up. I have it on my desk top computer, so, with a speaker phone, I can make necessary phone calls. It is available at www.Talk For Me.com. A trial version is available.

I am trying to save up for a laptop so I will have a portable means of communication. Although I am still able to eat whatever I want if I take my time and take small bites, my voice is nearly gone.

 

[chrisroski]

All good ideas, as a matter of fact I saw my Dr on Tuesday and they did give me a sample of the thinkening powder and it did work. They also increased my anti-depressant for the crying and to maybe help with the salivia, which it seems it might be doing. Also I now take the Rilutek with my food and that seems to help also. They do want to put a feeding tube in though which I really don't want, but they say better to do it now than later, cause sometimes if things get to bad they can't do it. I am considering it. Nice to keep in touch with the same problems, cause this is no fun and I pray they find a cure for all these diseases real soon. Thanks for your responses.

 

[momap53]

Chris, you can do a search on the forum archives for discussions about the PEG tube. Some of our members have even uploaded photos and you'll find excellent descriptions of problem solving techniques others have used post PEG. Look for posts or threads by Rose.
Steve Gleeson just had his PEG placed and has even put up a post placement time lapsed video on his website.
Good luck!

 

[notgivnup]

Chris so sorry about your diagnosis. You will find answers to questions you have if searching in search box. Also all these folks are all so kind and loving to help each other get thru this together. I hope you are doing ok. Love & {{HUG}}

 

[HelenL]

Chris, definitely look at the threads and do a search for Peg and for food processors, etc. There are good recipes hanging around as well for the peg when you get that.

Most versions of windows have a text to talk feature on them, so if you have a laptop or netbook that will help. Also there are apps you can download for both tablets and ipads that do the text to talk. I think there's an app that costs around $2 for the ipod that people have recommended. If you can still talk, there's sites that you can "bank" your voice, and use your own voice, especially for phrases such as "I love you"

Good luck...

Helen

 

[caldona]

I have a computer program called "Talk For Me." If I remember correctly, it cost about $85. It is quite easy to use--just type in what you want to say and hit a button called, "speak input." Commonly used phrases can also be set up. I have it on my desk top computer, so, with a speaker phone, I can make necessary phone calls. It is available at www.Talk For Me.com. A trial version is available.

I am trying to save up for a laptop so I will have a portable means of communication. Although I am still able to eat whatever I want if I take my time and take small bites, my voice is nearly gone.

Have you thought about a Dynavox computer you can operate it with by using hands, feet, eyes, and also by a dot on your glasses or forehead and it's covered by Medicare and Medicaid it can put on a stand that comes with it or you can carry it around with you

 

[IhavePLS]

Hello Chris,

I haven't posted here (not meaningfully at least!) for some time --- I suppose my most recent absence may be better classified as "avoidance"......yea, I understand that this is not a good thing, but it is (I think) a rational response to my symptoms. I'm sick of being sick. I have obligations, and I can't seem to handle them in the way that I want to...

OK....whatever!

Chris, may God bless you. I am so very sorry that you are having the problems you've outlined above. Unfortunately, I can't (with any confidence) offer you any advice, as I haven't had swallowing problems you've have. I do have difficulty swallowing at times....i.e., spasm in my jaw muscles - I've told my wife that this weird feeling (pain) is akin to the pain/discomfort you had when - as a kid [hopefully as a kid anyway!.....:shock:!] you chewed 25 to 35 pieces of bubble gum at once. MY symptoms are nowhere as progressed as yours are. I am so terribly sorry.

Chris, can you tell us how long you've had symptoms? When did they begin? What happened?

The folks here are simply wonderful. When I was diagnosed, I had so many questions, and the individuals here were so very kind in their responses. Let folks here know precisely what you are concerned about -- AND what you need. Let me assure you: BAR NONE --- this is THE best place in which you can gain an understanding of the PLS disease process. Chris, I can ASSURE you that it is highly unlikely that your neurologist can provide the experiential understanding that the folks here can provide for you! It is not my intent to cast aspersions on the science of PLS --- but it IS to assure you, Chris, that neuros do not know what the hell they're talking about....and your PCP will likely be (so much more!) ignorant as to how to coordinate all of your care. I've had MDs ask me (2-3 of them in the past year, in fact) to explain the nature of PLS to them).....again, whatever!

I don't mean to be negative....however (!), through experience, I've learned that you have to learn as much as you can about PLS......(Chris, I would implore you NOT to allow your personal experiences to be discounted by ANYONE!) ....and the experience of the kind folks here is huge as well!)....all of this information must ultimately serve as the best EMPIRICAL evidence that defines PLS...and it must continue to do so until a cure is found. Put it together -- we don't have a cure, but we CAN partner with you, Chris.

Let us know, Chris, how we can help.

Mike

 

[chrisroski]

Well I was diagnosed Jan.24,2012. It started out very sutly ast year I noticed that I kept clearing my throat and then some swallowing problems but they where mild. My youngest daughter kept saying that I sounded like I was slurring my words, but no one else noticed it but her. I went to my family Dr and he sent to me to ear, nose & throat specialist, he put scope down, but there where no polps or tumors, he also sent me for a swallow test which was fine, but my Aug.2011 I was really having a rough time. I went to ER and they keep me because of the slurred speech. Had MRI, Cat Scan, tested for Miothenis Gravis, nothing. They were sending me home but did one more test and found a blockage in my right cartroid artery, had surgery to clean it out. So they just assumed the swallowing & slurring was from that, but it wasn't it just got worse. Family dr sent me to a neurologist, she is the best in this area, from Drexel University and I just love her & her staff. They sent me for EMG, but that was ok, so they diagnosed PLS, with the understanding that it takes 2 years b/4 they rule out ALS. Another words if it doesn't go to the arms, hands, legs or feet you stay PLS, if not you have ALS. So far my legs and such are fine, just very bad swallowing & my speech is very slurred. I now use a thickening agent in liquids to get them down and they want to put a feeding tube in, don't want to, but I think I will have to. As for the speech I am hoping to get an Ipad that will talk for me, cause not being able to communicate with people, especially my grandkids is killing me. I have a great deal of support from my family and friends, but it nice to talk this way with people who have what you have, cause no one can fully underdtand unless you've been there. Appreciate your message, and please keep in touch, it sure does help

 

[old dog]

Chris - Please arrange to have a friend or family member to act as an advocate in case you should ever have to go to the ER by yourself. Prior to my diagnosis, I fell and dislocated my shoulder. Because of my slurred speech, ER personnel thought I was drunk even though I told them I had an undiagnosed neurological syndrome. Blood tests were run which proved I wasn't drunk, but my potassium was quite low (probably from the diruetic I was taking for high blood pressure) so I was given potassium by IV. I told the attendant something was not right, but she ignored me and left the room. In less than a minute I was sick and tried to call for help with no success. Thank God I was hooked up to a bunch of monitors, because the potassium stopped my heart. The bells and whistles brought help in a hurry and I recovered with no ill effects that I am aware of, but I had to pay for an overnight stay in intensive care because the hospital was afraid to release me before they could be confident that I was okay. The right decision, even though I resented having to pay for what I thought was an error by the staff.

 

[John1]

Well I was diagnosed Jan.24,2012. It started out very sutly ast year I noticed that I kept clearing my throat and then some swallowing problems but they where mild... They sent me for EMG, but that was ok, so they diagnosed PLS, with the understanding that it takes 2 years b/4 they rule out ALS. Another words if it doesn't go to the arms, hands, legs or feet you stay PLS, if not you have ALS. So far my legs and such are fine, just very bad swallowing & my speech is very slurred.

Hi Chris,

I think you received some misinformation about PLS and its symptoms. PLS is characterized by destruction of upper motor neurons while lower motor neurons stay intact. EMG detects abnormalities in the LMN but not the UMN hence you had a clean EMG. Most commonly PLS starts with spasticity and leg weakness. Your route is less frequent but does occur. Here is a summary from the Mayo Clinic on PLS symptoms.

Primary lateral sclerosis (PLS): Symptoms - MayoClinic.com

Symptoms
By Mayo Clinic staff

Signs and symptoms of primary lateral sclerosis typically take years to progress. They include:

- Stiffness, weakness and spasticity in your legs
- Tripping, difficulty with balance and clumsiness as the leg muscles weaken
- Weakness and stiffness progressing to your trunk, then your arms, hands, tongue and jaw
- Hoarseness, reduced rate of speaking, slurred speech and drooling as the facial muscles weaken
- Difficulties with swallowing and breathing late in the disease
- Less commonly, PLS begins in the tongue or hands, and then progresses down the spinal cord to the legs.

 

[LouLou]

Chris, welcome to our group and so sorry for what you are experiencing. I'm sure you will find great comfort in reading the posts from others on here. I joined about a year ago and have learned so much from others. You'll find that there is not alot of info to be found on PLS on the Internet. Some of it is helpful, but alot of it the same general information from site to site. I have found by doing a search of "university studies on primary lateral sclerosis", there seems to be more info than just searching PLS. Just a tip. We are all here for you and we understand so well.

Blessings,
LouLou

 

[chrisroski]

I'm sorry to hear that, this stuff can be very scary when you can't talk. I have a card that my nurologist gave to me to carry with me that says I have this & that is why my speech is slurred so bad. They gave it to me in case I got stopped by a police officer, never thought of the ER, but I have my daughters who can speak for me if necessary and the gentlemen I live with. Thanks for the advice though & take care. We all in this together no matter what