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Moonwolfy

Member
Joined
Sep 26, 2012
Messages
20
Reason
DX UMND/PLS
Diagnosis
09/2012
Country
US
State
Ca
City
Eastvale
Hi. I'm new here. I just got diagnosed with PLS a couple weeks ago officially after 2 years of looking for answers. I'm 35 year old woman and doctors thought I was crazy and just needed therapy. It was seriously hard since I became severely disabled within a few months time. I went from being a normal 33 year old in graduate school to having such bizarre symptoms doctors could not explain. My legs started getting so stiff and feeling weak and I felt like I was a robot that needed some oil. Then my legs started shaking all weird when standing and walking and my balance became so bad I needed a walker. Then my speech started stuttering and slurring bad. I was in grad school to try and become a therapist. Communication is everything. Then my speech got so bad I could not speak anything intelligible. Speech therapist could not help me. I used a dry erase board to communicate for a very long time. Then I bought a iPad and found a speech app which I now use to communicate. Was told could not continue in my grad program. It's been very isolating the past two years. I also have pseudobulbar affect very bad often a few episodes a day. It feels like conscious seizures and border on painful. This also keeps me more isolated as I'm embarrassed when this happens in public. I want to go to a in person support group but have only found those for people with ALS. Don't know if this would be considered intruding since I'm diagnosed with PLS?
 

vzandt

Senior member
Joined
Nov 12, 2011
Messages
570
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
N.H.
City
Noneknown
Welcome Moonwolfy.
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
Welcome! We have a number of folks here with PLS.
 

ottawa girl

Moderator emeritus
Joined
Jun 14, 2012
Messages
1,506
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
City
Ottawa
Hi Moonwolfly,

Sorry you had to find us here. Gosh- you've had a tough time of it! Isolation, as you know, is the worst thing-no matter the circumstances. I hope you will find support here- I have. In fact, I now consider many people here my friends. It's been a life line for me. Just the tips alone, are more useful and plentiful than anywhere else I have found.

Hope to hear from you again soon.
 

CindyRN

Distinguished member
Joined
Jul 5, 2012
Messages
110
Reason
PALS
Diagnosis
01/2012
Country
US
State
Montana
City
Great Falls
Welcome Moonwolfy, there are lots of caring people here but sorry you had to find us. Any questions...ask away
 

Moonwolfy

Member
Joined
Sep 26, 2012
Messages
20
Reason
DX UMND/PLS
Diagnosis
09/2012
Country
US
State
Ca
City
Eastvale
Thank u all who responded. I already feel a bit less isolated now that I have found this forum
 

Tokahfang

Moderator emeritus
Joined
Jan 31, 2010
Messages
773
Diagnosis
07/2009
Country
US
State
VA
City
Richmond
My local ALSA chapter has explicitly invited me to their in person ALS support group. I'd definetely go at least once, if you're interested. At worst, they aren't very friendly, but I think they will be. When you are that disabled does it really matter why, from a support perspective?
 

LouLou

Active member
Joined
Jul 11, 2011
Messages
91
Reason
DX UMND/PLS
Diagnosis
06/2011
Country
US
State
Washington
City
Woodinville
Welcome Moonwolfy - sorry about your PLS diagnosis. This forum is the right place to be for support and to make you feel like you're not alone.

Today my husband and I went to our local MDA sponsored support group in Everett, WA, There were 5 of us female PLS patients, our spouses and the coordinators from the MDA. This is the best thing that has happened to me. We meet for 2 hours once a month and talk about our issues, feelings and just about everything. I believe God has brought us all together so we can help one another. It is uncommon to see 5 PLS patients in one room. We also have an ALS patient attend from time to time. I highly recommend looking for a support group. You can call your local MDA Chapter. This group has become my second family and I truly love them all.

Best wishes to you. We understand and are here for you.

LouLou
 

Moonwolfy

Member
Joined
Sep 26, 2012
Messages
20
Reason
DX UMND/PLS
Diagnosis
09/2012
Country
US
State
Ca
City
Eastvale
Thank u Beky and LouLou. I'm going to find a local support group. I've decided that now after posting on here and talking to a few people here that it's time that I try to find a group locally. I been so isolated for too long. I'm too young to be doing that and I want to meet people similar to me. Thank u all for your kindness who have taken time out to respond to me.
 

billbell52

Distinguished member
Joined
Feb 1, 2010
Messages
226
Reason
DX UMND/PLS
Diagnosis
05/2005
Country
US
State
TX
City
Garland
I am so sorry to hear your story.

PLS is a rare disease. About 50 people in the U.S. get it a year. There are around 1000-1800 people in the U.S. with it. I go to the MDA/ALS clinic in Dallas and it sees less than 10 PLS patients and some of those come from Oklahoma and Arkansas. Support groups do exist in areas with large populations. I have never seen a PLS patient at the clinic. They are mostly ALS. PLS progression varies widely. Some people can still use walkers after 10 years and some are in powerchairs after 2-3 years. I personally believe there maybe more than 1 type of PLS. Mine started with speech (Bulbar PLS) and progressed to my legs after 5 years. I went from a cane to a walker to a scooter in less than 2 years. I have had it for 9 years. You are very young to get PLS. The average age to get it is around 51.

Another good group is [email protected]. This group has been around for a while and is more active. You might post there to see if there are any PLS'ers in your area.

This is a good place to look for help.
SP Foundation
 

Moonwolfy

Member
Joined
Sep 26, 2012
Messages
20
Reason
DX UMND/PLS
Diagnosis
09/2012
Country
US
State
Ca
City
Eastvale
Billbell52- thanks for your responses. I appreciate the info. My neuro gave me very little info and some of it I did not understand and since it's not the easiest to communicate I decided to do my own research and bring in questions at each appointment. But he's a busy guy..a great neuro..just crazy busy. That's when I found the forum and thought this is the best wealth of info and support. I have been using my walker since onset..the kind with no wheels because my balance is off and I tend to also get dizzy. I have a wheelchair for real bad days and longer distances. I probably need a scooter but can't afford as I kept getting denied social security. My hearing is finally next Friday but won't know decision for a bit after. I try to avoid wheelchairs and scooters as much as possible though as I like trying to keep my strength up through walking..even if it's not a lot. I know it's a rare disease and even rarer that someone my age has it. My age is a main reason all doctors kept saying I was normal for almost 2 years and if I just accepted that this was all psychological I would be talking and running in a week. My new neuro said those doctors are the nutters to think that a person in my condition just need counseling..lol
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Sara,

If you need the walker, I think you'd find that the wheeled one might well work. Balance is one of my biggest issues--I used to fall a LOT. I use a wheeled walker with a seat for when I get tired. If you hands weaken, it would be much easier than the old style ones, believe me.

You can check with the ALS association, they MIGHt let you borrow things from the loaner closet. Keeping up strength is all well and good, but falls can be deadly, so if you need the scooter, see if you can qualify for one via a loan closet or Medicaid -- or even used on CL.

I'm not diagnosed but have had UMN issues (now that the doctor explained which of mine are UMN) for nearly 20 years probably--when I was in my 30's. I've used a scooter on and off since I was min-thirties. A walker for almost 10 years at doctors insistence--all without anyone really knowing what was wrong with me.

Part of the problem may well be with SSDI is that PLS is rare, and it normally does take more than 4 years of symptoms before it's diagnosed---but you may well need supporting documentation from more than one neuro to win the battle with them, especially with records from OTHER doctors saying it's a somatic type of issue.

Being younger and having health issues is the pits. I'm older now--but was as young as you when mine started, so I can relate. Don't close yourself off from the world! If your hands work well you might find some online gigs that don't require voice to help with income, too.
 

IhavePLS

Distinguished member
Joined
Apr 17, 2011
Messages
277
Reason
DX UMND/PLS
Diagnosis
12/2010
Country
US
State
Pennsylvania
City
SW
Hi Sara,

So very sorry to hear of your diagnosis - and your symptoms. If I can tell you anything of value, Sara, I would advise you that PLS is a disease that is ever consistent in its inconsistency. It is also (I think) perhaps THE most complex, diagnostically-evasive, confusing, life altering, and mysterious conditions I am aware of. Most conditions seem to have a fairly straightline and predictable track -- but this is certainly not true of PLS....I plateaued for a while, but then I've seemingly had increased decompensation more recently.

All of the above characteristics lend themselves to a really weird phenomenon: And that is that I continuously find myself at a persistent loss for words as it relates to expressing my symptoms (even to my neurologist). As I told folks here a while ago, I once remarked to my neurologist that some of my symptoms had recently been very strange. His response: "Mike, isn't this ENTIRE EXPERIENCE strange?" Of course, he was referring to my PLS in the content of -- not only MY experience, but also his own. Suffice to say that even the very best of neuros remain perplexed (I used to attend one of the best known clinics in the United States, and the neuro - as smart and insightful as she was - had no definitive answer....as it has been stated so well above, there simply are not enough PLS'ers --- and there are just not enough of us who are stationed and congregated in the same place -- to do any kind of truly meaningful research. Therefore, you'll find that emergent symptoms can be confusing, frustrating...and that others simply cannot empathize (they CAN sympathize, but they cannot possibly empathize). This is clearly the case with you.....the experience is different for everyone. What is the same is all those characteristics I mention above: Frustration, confusion, exposure to something that is -- well, surreal. VERY surreal.

With well wishes,

Mike
 

CAKmet

New member
Joined
Nov 18, 2012
Messages
3
Reason
Loved one DX
Diagnosis
01/2011
Country
US
State
New Jersey
City
Medford
This is my first time writing to anyone out there. My husband has been sick 4 years. We have been to numerous top doctors, and first they thought he had ALS, then it was two different things going on in the brain, then it was motor neuron disease, and now it is PLS. He had all the symtoms of each of every one of them. He cannot walk or talk at the present time. His motor skills are gone. He went from walking with a cane, to a walker to a wheelchair. He cannot shower, shave, dress himself or feed himself.

We have home aids to help. First it started with part time a few times a week, now it's an aid working from 8 am to 2 every day, and then she returns to put him to bed. We also have a person on a weekend 6 hours per day. All of this, of course, is paid by us.

This disease is ruining us financially, physically, and emotionally. Of course, when these aids are gone, I take over. So I am his caretaker for the last 4 years. I have a son who lives near, so he helps as often as he can.

At times I feel that I don't know how I do it all. If I don't do it, nothing gets done around the house or the errands do not get done, etc. I have to do food shopping, banking, post office, drug stores, errands, etc.

No time for my self anymore -- can't go to lunch or dinner, that is all in the past. Even shopping (which I loved to do) seems like a chore. I saw a therapist months ago, and he told me I am burned out, and put me on anxiety pills, which help somewhat.

My husband gets frustrated; because of his speech problem. He has a wordboard, and a speaking machine that we received from Medicare. When he was in rehab and physical therapy, the therapist suggested we get the speech machine.

He has had lots and lots of physical therapy and occupational therapy. But, nothing seems to help.

He also, at times, has swallowing problems, and the past few weeks is getting leg cramps during the night.

We have another appointment in early December with another ALS doctor that was recommeded to us by our Nurse Practitioner.

At times, I just feel overwhelmed with everything. It's no picnic for my husband or me. I remember the good times we had when he was well, and now it's over. And, how handsome he looked when he was dressed. Now, he just sits in his chair, mumbles and hardly watches TV or reads the newspaper. That was one of his passions, reading the newspaper, and the Sports Section the first thing in the morning.

I wouldn't wish this disease on my worst enemy. It is a terrible disease, and I wish that the doctors or research would find a cure or some kind of clinical trials that would help.

Please send some feedback or suggestions. Thanks.
 

Tokahfang

Moderator emeritus
Joined
Jan 31, 2010
Messages
773
Diagnosis
07/2009
Country
US
State
VA
City
Richmond
Thank you for sticking with your husband through all of this. I hope my spouse does as well as you have.

Depression is a common thing with PLS. It might be worth asking your hubby if he'd want to try anti-depressants. It won't make the real difficulties of it all go away, but it might give him some interest in the few things he can do.

Please, please join the caregivers forum here. You need the support that we on the other side aren't necessarily capable of giving. They've all been where you are.
 
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