Angry and Scared

[Eric2266]

I don't know if it's normal to feel so angry and scared about my PLS diagnosis, but I am. Before my diagnosis I had "undefined symptoms", but since my PLS diagnosis in March I feel like my world, at 47, has come to a screeching halt. Gone are my career, some of my hobbies and many of my future dreams. I refuse to take a Woe is Me attitude, but am crushed for my new bride of just 8 months, 10 year old son, 13 year old daughter and 18 year old stepson who expect & need so much from me. Things that used to be simple are becoming more difficult.

How can there not be aggressive treatments let alone a cure? I want to fight, but feel like I'm punching darkness.

How come when I try to explain to people what I'm diagnosed with I get either, "I'm sorry" or "You look great"? They have no idea . . . . my life is changing in ways they will never understand.

How can I support those around me when I'm unsure of my own future?

My psychologist said that this is like dealing with the stages of death and this is "normal" .. normal hell . . .

I'm sorry to rant, but I'm hoping to hear how many of you have met this challenge and deal with people.

Eric

 

[bigmark1954]

....You are experiencing the "normal" roller coaster of emotions of a person diagnosed with MND. Many of us are on anti-depressants to help even out the spectrum of anxiety associated with your condition. Just so you know your emotions will change daily, weekly, and monthly.
I encourage you to read the stickies...you will learn a bunch, and realize that every one seems to have similar feelings about their new "label".
Keep your chin up, and hopefully you will evolve into a comfort zone. We all have anxiety, anger, denial, fear, and isolation which fuels all of the emotions.
There are a bunch of really good people on this forum......you may not realize that now, but in a while you to will find comfort in learning that you are not the only one in this horrible conundrum.
I have adopted a new mantra about life....IT IS WHAT IT IS....

 

[MaxEidswick]

>I'm sorry to rant, but I'm hoping to hear how many of you have met this challenge and deal with people

sorry To hear about your PLS. You will find that during the first weeks and months from diagnosis you will go through a roller coaster of emotions. The ones you listed are all real.

Hang in there,

Kind regards,

Max

 

[Dusty7]

"The Kübler-Ross model, or the five stages of grief, is a series of emotional stages experienced when faced with impending death or death of someone. The five stages are denial, anger, bargaining, depression and acceptance." (Wikipedia)

So you are in anger presently, which is normal--the normal second stage. You will have to work your way through it as many of us here on the Forum have. When you get to "It is what it is (IIWII)" you will be at acceptance. It may take drugs, it may take time, it may take more help from your psych, it may take developing a new attitude, but hopefully you will get to IIWI... and the sooner the better.

Try to understand that while PLS is a horrible disease, it is generally not fatal like ALS or PMA. And pancreatic cancer can take you down in a matter of months, as can some other diseases... as well as a drunk driver (even faster). In other words, it could be worse!

Try to accept it as IIWII and your anger will not change it, but will only make it harder for those around you. Good luck!

 

[Nikki J]

I am sorry. It is hard and being diagnosed is a terrible shock no matter how prepared you think you are. As the others have said it is normal to rage and grieve your losses. Good that you are getting professional support

It is true that most people don't understand. How can they ? These are rare diseases. PLS especially. And what can they say? I actually like being told I look great it gives me hope that I am not so badly affected yet. I can see that it might feel like a denial of what you are going through though. And for people who truly care about you this is a major loss too- not just your family but your friends

Try to let people be part of this in whatever way works for you and them

And try to remember there is life after diagn osis. Different but there. Especially for PLS.

Hang in there

 

[azgirl]

So sorry Eric. I can't really add much to what the wise members above have said. This is a tough road but it is possible to experience some joy. Hang in there.

 

[olly]

Sorry for your diagnosis Eric and I can sympathise with how you feel right now.
I started with PLS aged 30/31 yrs,single parent to then 10yr old son....worked fulltime,gym 3 times a week,avid runner ect ect.
My world collapsed and I found myself in a body I did not recognise........that was 15yrs ago.
I can still walk around my disabled ground floor home,a very short distance outside but use mobility scooter...I miss a lot of things but thankful for what I still can do.
PLS is not a death sentence ...Its a life adjustment disease and you can still within reason and a few restrictions live life to the full.
I go on my scooter rambling through the forest were I live ...my son walks....its great fun.
I will send you a friendship request and you can look at my photos....I have a blue 8mph scooter now...with my very own first road tax disc...yeah lol.

 

[old dog]

Eric - Rant and rave whenever you feel the need. That's a large part of what this forum is about. I believe stress plays a part in bringing on this terrible disease, so take advantage of any outlets you find for stress relief.

I was lucky that I didn't become disabled until after I was retired, although I now realize that some of the symptoms I attributed to age and back trouble were actually PLS developing. I hope your progression will be slow, and you will find other ways to care for your family. Acceptance and adjustment will come with time.

 

[Eric2266]

Thank you everyone. Your words bring some hope that there is a future . . although different than I hoped and planned for.

 

[IhavePLS]

Agree with everyone above. Let me start here in saying that every word you wrote above could have been my own. And if you don't mind, I'd like to elaborate a bit:

On the day you were diagnosed, Eric, nothing else changed with the sole exception that you were given a diagnosis (which you did not have the day before). But the fact that you received a diagnosis did not mysteriously escalate/ speed up your symptoms and/or your overall disability -- because your symptoms are a reflection of the progression of the disease itself --- and you'd have the symptoms you have irrespective of your having had received a diagnosis). And so....my point is that, at least from a physical perspective, getting diagnosed doesn't matter -- it hasn't altered your physical well-being - not for better or for worse.

Cognitively/emotionally? That's a whole different ballgame. While your state of mind may not "feel" normal (I'm sure it doesn't at all), your response is normal, Eric. Completely normal. There are stages of grief that people go through (your psychologist is alluding to this):

Denial, Anger, Bargaining, Depression, and Acceptance

Denial: "Are you kidding me? This is me we're talking about here, you know! I've run marathons, I lifted weights, I took care of myself, I ate salads. I thought I'd be running into my 80's. I'm untouchable -- even invincible. This really isn't happening."

Anger: "OK, so it is happening. Why me? How could my body -- my body -- let me down like this? I feel betrayed.

Bargaining: "I would give anything I own not to face this trauma."

Depression: "If I don't understand any of this...how can anyone else possibly understand how I feel? I'm depressed."

Acceptance: "I have PLS" (as you will note from my handle here -- I have accepted that I have PLS. I hate it, mind you, but I accept it).

While people theoretically move through these stages in sequence, I personally find that -- at least for me -- the stages have been iterative and reiterative, in the sense that I move back and forth between them. There are times in which I am firmly accepting that I have PLS -- but I'll have a momentary/ fleeting thought now and then, in which I find myself thinking: "Is this for real?" Anger, depression -- those stages are part of the process.

And Eric, you'll go through a similar process. Keep in touch with folks on this forum....there is nowhere else that I can think of where you'll find good, helpful people who have a TRUE understanding of what you are going through (we have the disease as well -- and what you say is not foreign to us -- like it is with many neurologists!)....this forum is -- bar none -- the BEST source of support you'll find anywhere in the world. Your life is not over -- it's simply different. It's changed. Once you accept that you are now a different "you," you'll be just fine. You'll still have PLS, but you'll be in a better place. And you will get there, I assure you -- the process you are following now is very normal.

Mike

 

[billbell52]

Sorry to hear about your diagnosis.

I got Bulbar PLS (starts with speech) when I was 51. I was diagnosed 2 years later. Doctor said it PLS and not ALS since Bulbar ALS progresses quickly and I would be near death if it was ALS. Suddenly PLS doesn't sound so bad. My wife has been great during this and I feel I need to do my best to be a minimal burden. I was confined to a power wheelchair (PWC) after 7 years. I am now in my 11th year. I still find it difficult to see my wife struggle to do something that I had no problem doing when I was healthy.

PLS is a VERY rare disease and it is not hereditary. It progresses slowly so it is hard to study. All the research $'s are focused on ALS. I am hoping an ALS breakthrough applies to PLS.

PLS progression varies widely. Some can use a walker after 20 years. Some are confined to a PWC after a few.

 

[Schmutz]

My current rant and rave...

two months ago, my PlS caused me to fall and break my humerus bone (upper arm)
That caused me to stop doing my physical therapy for the PLS (my arm was very sore and only suppprted with a sling - this kind of break relies on gravity to align the bones)My return to PT for the PLS shows that my lapse was very detrimental to my balance and now I need PT for my arm.

I'm now a total burden to my husband and I don't know what to do...

WHAAAAAA!

My lousy balance scares me, I can't afford to fall again.

Sorry, but all it feels like I can do right now is complain.

Anne

 

[billbell52]

Anne, don't be afraid or discouraged to use equipment to help with your limitations. If you have balance problems use a walker. I went from a cane to walker to a scooter over a period of 18 months. PT will help keep you stay active but will not improve your balance.

 

[Eric2266]

Thanks Mike, your words are comforting . . . this is someplace where we are all truly in this together . . thank you again.

 

[Chris3274]

Hi Eric:
I was diagnosed in January, 2014 after 4 years of extensive testing during which my
mild symptom of a slight leg weakness, barely discernible, escalated my using a rollator
to get around.

Yes, I was and still am at times, devastated. It would have been much worse but I
had already dealt with much of my fears because of a previous diagnosis of Parkinson.
When tests came back much later that I didn't have that dreaded disease I thought
I was out of the woods. Little did I know.

I send out an email to my co-workers, 8 of 60 closest co-singers and a few tennis
friends. I told them I was diagnosed with PLS and to google it. It other words, don't
ask me to relate to them what's going to happen to me. THAT WORKED. They are
very supportive. By the time I was diagnosed most of my friends knew something
serious was happening to me. They were very empathetic, even then. I get "you look
really good". or "I admire you your great attitude" etc etc etc. They don't know what
to say and I wouldn't know either if the shoe were on the other foot. They know it's
bad but their safe for now. It isn't happening to them YET and life goes on.
I have been to many funerals and afterwards went back to work or played tennis and
thought that just last week they were here working or playing with me and now they
are gone but here I am still carrying on. It is basically the same thing except I have
been re-moved from most activities without actually dying. I would say that that has
to be a good thing because although things have changed drastically and will change
some more, I am still enjoying what I have left. And that is still a lot.

I still really get angry nonetheless. And scared. Who wouldn't.

You are younger, 45. Your peers still have the attitude that nothing bad will happen
to them, At my age, 65, there is plenty of empathy from my peers. 20 years makes
a big difference

Good luck to you. I really know exactly how you feel.

One more thing. I never feel very good after talking to a doctor. They have a way
of reminding me of just how bad things are. I choose to spend a little time several
times a week googling the latest research in finding a cure and serious treatment.
One out called Nurown stem cell implantation. Phase 2 underway at Mayo and two
MA. hospitals. Looks very promising. And there are others. I don't google how
bad things are going to get. I got that down. I investigate the research being done.
Helps my attitude.