Sadness worse now than when diagnosed

[mbmurray]

It has been one year and three months since my diagnosis and 2 1/2 years since my first symptom. Going through the diagnosis process and being told I have ALS, I was kind of prepping myself for it so it really wasn't a shock for me, also at the time the weakness was only my right arm. So looking back I kind of felt that it really wasn't affecting me, maybe it was denial

Fast-forward to today, very little use of my right arm, left arm weak, legs weak, I find myself breaking down more often (not frontal issues). I think I finally realized this disease is really affecting me in my ability to do things as well as seeing my two kids ages seven and four and what I'll miss out on.

Anybody else had similar experience. I thought being 43 would help in my flight.

 

[MaxEidswick]

Mr. Murray --

>It has been one year and three months since my diagnosis and 2 1/2 years since my first symptom.

I can relate. I was onset in the end of 2010, diagnosed in August 2013.

First symptoms for me were speech issues, then a stroke in June 2012, then the VA in Cheyenne and down to Houston for a new exciting job with HP ...

Actually for us June 2012 was a very interesting month: June 4 stroke, June 14 evacuation from our home up in the mountains, June 22 house burned down to the ground along with 56 others in the high Park fire, June 30 contract with HP canceled and drive back to Colorado from Houston. Two weeks later, HP offered me the job of a lifetime working with some of the smartest young engineers in the world doing an exciting and challenging new position. .

In those days, I was able to speak much more clearly, walk without a stick, and go out for a meal with friends and family.

>Fast-forward to today, very little use of my right arm, left arm weak, legs weak, I find myself breaking down more often (not frontal issues). I think I finally realized this disease is really affecting me in my ability to do things as well as seeing my two kids ages seven and four and what I'll miss out on.

For me it is my left arm, left hand, standing straight, walking more than 30 or 40 feet without that damned wheelchair (with my wife Sandy as driver), or having to use the stick for short walks.

Bigger problem are emerging:: having difficulty standing up from normal chairs, having real problems getting up off of that damned toilet, which is a really stupid reason to have to stop working.

So it goes…


>Anybody else had similar experience. I thought being 43 would help in my flight.

Well from my point of view all of us PALS are in the same boat, share the same experiences, but at different stages.

This is probably not evolution to be enjoyed, but it is another life experience.


>I think I finally realized this disease is really affecting me in my ability to do things as well as seeing my two kids ages seven and four and what I'll miss out on.

I'm having the same problem, but focusing on what we can't do and what we are going to miss is probably the wrong perspective.

I am trying hard not to think about what is going to fail tomorrow and to enjoy what I can do today.

It's not easy, but what other choice do we have?

By the way, forgive the verbosity but I am Susie issue experimenting with voice to text (Dragon NaturallySpeaking) and, given my speech which sucks, it is doing a great job.

Kind regards,

Max

 

[MaxEidswick]

here are the mountain pics: https://www.facebook.com/max.eidswick/media_set?set=a.4710565248885.2189138.1436986399&type=3

 

[MaxEidswick]

>By the way, forgive the verbosity but I am Susie issue experimenting with voice to text (Dragon NaturallySpeaking) and, given my speech which sucks, it is doing a great job.

That was supposed to be: "by the way forgive the verbosity but I am experimenting with voice to text (Dragon NaturallySpeaking) and given my speech which really does side, it's doing a pretty good job"

 

[hjlindley]

I finally gave up and asked for an antidepressant. I was diagnosed September of 2011 when only my right hand was weak. Now my legs are weak my left hand is going. I I think it is normal for us to get sad and depressed. Most of us are smarter than the average bear and we know what's coming. not sure if the antidepressant is working yet.

 

[MaxEidswick]

Hi, Hollister --


>I finally gave up and asked for an antidepressant. I was diagnosed September of 2011 when only my right hand was weak. Now my legs are weak my left hand is going. I I think it is normal for us to get sad and depressed. Most of us are smarter than the average bear and we know what's coming. not sure if the antidepressant is working yet.

Well good for you! I tried an antidepressant, prescribed by my PCP, but I don't know if it really ever helped and I didn't care for the side effects so I gave it up.

Hell Sandy gives me so many pills, between the vitamins and all of the ALS prescriptions I should be able to gain weight just eating the damned things .

Let us know which one you went with and if it's effective for you and, also, what side effects you find you run into…

Max

 

[mbmurray]

to clarify when i say break down, i mean cry. i never cried before, but past few months often...

 

[MaxEidswick]

>to clarify when i say break down, i mean cry. i never cried before, but past few months often...

Have you been told about frontotemporal degeneration (FTD)? I believe that new and unexpected emotional outbursts are a possible side effect of FTD which is related to ALS, somehow:

FTD with Motor Neuron Disease (FTD/MND) | Association for Frontotemporal Degeneration

 

[mbmurray]

i dont think it is ftd only because it happens when i cant do something i used to or i am thinking about my kids, etc, not random. I think the reality is finally settling in...

 

[CGARS]

I understand what you're saying. I just turned 43, and have now been in a PWC a year. My 10 year old says she can't wait for the nice weather so she can ride her bike, and I in my PWC around the block like last summer.
Breaks my heart, not sure if I will be able to do it.

I find staying positive helps, and allowing technology that works to make things easier.
Hang in there.
Casey

 

[hn7609]

Anybody else had similar experience. I thought being 43 would help in my flight.

I'm sure that we all are having that experience............Diagnosed 2 1/2 years ago and I've been unable to take a step for 2 years now but for the most part everything else worked OK, so life was not too bad. Now I'm losing it all, begun losing weight due to chewing & swallowing issues. Advancing weakness in the hands and arms are making transfers an adventure. If you can't transfer you can't do anything, tough to get on the toilet, into the bed, dressed, etc. I've done all of this stuff for myself since diagnosis and now I can see that it's all coming to an end. I expect to be helpless in another year and yes it scares the hell out of me. Not so much for myself but for my wife and 2 teenage children, nobody should have do what they will have to. And yes I cry........I heard the Beatles "Yesterday" just last week and just couldn't hold it back.

We are all going thru it.......you're not alone.

 

[MaxEidswick]

>i dont think it is ftd only because it happens when i cant do something i used to or i am thinking about my kids, etc, not random. I think the reality is finally settling in...

Yes, me too – – it just started again bad all couple weeks ago:-(

Hi, Casey

>I understand what you're saying. I just turned 43, and have now been in a PWC a year. My 10 year old says she can't wait for the nice weather so she can ride her bike, and I in my PWC around the block like last summer.
>Breaks my heart, not sure if I will be able to do it.

Hang in there, nice weather is coming soon


>I find staying positive helps, and allowing technology that works to make things easier

Me too, using speech to text now as typing has become almost impossible. This speech recognition stuff is pretty remarkable given how slurred my speech is now.

>... Diagnosed 2 1/2 years ago and I've been unable to take a step for 2 years now but for the most part everything else worked OK, so life was not too bad. Now I'm losing it all, begun losing weight due to chewing & swallowing issues. Advancing weakness in the hands and arms are making transfers an adventure....I heard the Beatles "Yesterday" just last week and just couldn't hold it back.

FWIW, Sandy has been making me whole, full fat, chocolate milk with 2 tablespoons of peanut butter or idealized honestly for
Nutella plus a banana liquefied – – it's a bit sick but it adds up to about 700 cal, so three of those a day gets me to a baseline of 2000 cal plus that I get liquefied gazpacho times two plus at least one fruit smoothie that has at least 300 cal.

Anyway that has Me from losing weight so far. I've been on this since the end of January, although I still try to eat something a few times a week despite the fear of choking.
We are all going thru it.......you're not alone

 

[zoohouse]

asey <My 10 year old says she can't wait for the nice weather so she can ride her bike, and I in my PWC around the block like last summer.
Breaks my heart, not sure if I will be able to do it.>

You will be able to do it, my husband is a quad with just enough movement in his thumb to move his joy stick, and at times I have a hard time keeping up, especially with these hills. We are waiting for the components for his head array to come in so that he can control it that way. Where there is a will there is a way. Keep up your positive attitude it is an inspiration to others.

hn7609<Yes it is tough at times doing for my husband, but it is definite character building. I have seen a lot of maturing and growth from his two youngest kids that are definitely positive. My attitude about life is much better because when ever I start feeling sorry about myself, I ask myself if I would want to trade places with my husband or any of you that are PALS and the answer is always NO. My husbands attitude is nothing short of amazing, and he affects every single person that he comes in contact with, and if I can be part of that by serving him then I am honoured.

When Tim was first diagnoses I was devastated and said I wished we could trade places as my kids were grown and he had so much to give the world. He stopped and stared at me and asked,"Paulette which one of us has the most positive attitude?" "Well you do" I replied. " And which one of us can't sit still, and is miserable when they are sick?" "That would be me." My head starts to lower. "And which one of us has the skill and gift of looking after and caring for peoples medical needs?" "Again that would be me." I whispered.
"Then do you really think that God made a mistake in choosing me to have ALS, and you to be my care giver? We are and will be watched at all times, and how we approach this disease will teach others, and I for one, plan to show others that our faith will not let us down, and God uses all things for good. We have prayed many times, use us Lord in anyway that wills, and now he is. Did we mean it when we prayed those words?"
We haven't looked back even though Tim has progressed very quickly. Interestingly Tim's voice has been spared and he uses it to affirm the people around him.

Yes there are tears, but they are short lived, and then we move forward. God Bless all of you.

Paulette

 

[MaxEidswick]

>Where there is a will there is a way. Keep up your positive attitude it is an inspiration to others

As is yours Paula!

 

[MaxEidswick]

Sorry I meant "Paulette" (dictation error)