Emotional Support Books

Did not not exactly where to put this request so forgive me if this is the wrong category.
Been going to the Stanford ALS center for the past few months and it appears that they are going to diagnose me with ALS after one more test.
Just want to ask a good book, video, source for emotional support for me and my wife.
I am 66 had numerous auto immune disease and this is what is making the diagnosis more difficult.
Not trying to jump to conclusions just want to hope for the best and prepare for the worst.
Any recommendations are appreciated.
Roger

Hi Roger, I moved this for now since you are not diagnosed, and I sincerely hope Stanford finds another answer.

I'm not up on emotional support materials, so I'll let others take that, but I am familiar with "lots of serious health problems, with ALS as the cherry on top" as my husband was the only known person with his particular "cause of death, dealer's choice" combination.

You're likely already stronger than you think you are. I hope you won't need it, but the emotional on-switch that it takes for "yes, this too" to be internalized so you can move forward with life will be there if/when it's time.

Best,
Laurie

Roger, what tests have they performed so far and what is the one more test?

EMG, NCS... ?

True emotional support comes from family and friends close to you.

You could also address that concern with the Neuro staff at Stanford.
I'm pretty sure they have an ALS web site that has a "Contact" link
where you can ask questions direct to your team or Neuro.

They probably know of a support group that may help you.

Many many people before you have and are in the same limbo as you.

PS. Your bio says...

"I have been diagnosed with another Motor Neuron Disease."

Hope it is that one and not ALS.

Roger, I don't have any books to recommend- I do, however, recommend seeing a therapist (counselor, psychiatrist, psychologist- take your pick!). Regardless of your eventual diagnosis, it sounds like you have life limiting/changing conditions and having someone professional help walk and support you through the diagnostic process can be invaluable. They could likely recommend reading material specific to your and your wife's needs and provide you some insight into finding the best coping mechanisms for you.

Please take care-

Thanks for the replys and moving it to the right section.
For now I don't want to get into the exact results of all the test except to say the normal ALS test and they all point to ALS according to my ALS neuro. Just not ready to wrap my head around all of this yet. Yes a lot of it is denial and I don't want to accept all of it yet. This why I am asking for books on emotional support so that I can prepare to move on if I need too. Hope that makes sense.
Roger

I would have to say Tuesdays with Morrie by mitch albom is a must read. The movie Gleason is a good watch, I believe it's on Netflix, If not buy it on itunes. I actually got my first tattoo after watching that. No White Flags. Other than that at your age you certainly have developed some sort of coping skills to drag you through this. Just remember you are still the same person you were before this happened. I wish you luck.
Vincent

It's my partner who got the ALS diagnosis - so I do not have first hand experience. For me coming to terms that our lives had changed and would change even more was very hard in the beginning - for different reasons.

I found much emotional support simply by reading posts in this forum here. The posts are so open, honest and kind.

One of the books I picked up again is "When Things Fall Apart" - by Pema Chodron.

I am hoping that your diagnosis will go in a different direction and you will not need any of the information provided in the various responses to this thread.

No book or movie could prepare me for the path that unfolded before me. Many people recommended books to my wife and me. The folks meant well, but just did not understand what we were dealing with or where our heads were. The last thing I needed to do was to read a book about a terminal disease or about how others handled their terminal disease.

Working with friends and family may be sufficient to help you process your diagnosis (if it comes to that). But, if friends and family are not enough, I strongly encourage you to seek out professional help.

I have served on the board of a local counselling center for many years. From that experience, I can vouch for the help that professional staff can be to you in a time like this. In my opinion, no book can take the place of that.

Denial is a natural part of handling this kind of news. Denial is not a bad thing. In the early days it helped me to more gradually come to grips with how my life would change.

Some time after diagnosis, I recognized that every day is a special gift, just like it was before diagnosis. For me, it would be a waste not to get the most out of every day. I get less out of a day now than I used to, but I still do as much as possible to be a comfort to others, apply my special talents, and life life to its fullest.

If you eventually are diagnosed, be prepared for relatives, friends, and strangers to recommend that you investigate and partake in a myriad of mythical cures. I have had dozens suggested to me, some quite forcefully. Trust your doctors, not the folks pushing snake oil!

I am hoping the doctors will discover an alternative diagnosis.

Steve

Thanks again for the responses.
I agree that counseling is probably the best approach for now and will start ASAP. I have been involved in counseling professions in the past and worked as a school administrator for many years and seen the results of good counseling. I have supported local counseling agencies and seen the benefits in my own community.
I am just surprised that I am not handling this possible diagnosis a little better, I am a very strong person and been through a lot of serious health issues in the past. My life is fantastic and I am one of the happiest people I know and I have a GREAT life and family. It is just hard to see the slow decay of my body and what may lie ahead. I haven't read much on ALS or the details of the progression, just don't want to go there yet.
I have a great doctor but my case is complicated since I have several other auto immune diseases and he wants to make sure it is not a cross over that is acting like ALS.
Again just hoping for the best and preparing for the worst.
Roger

Keep us posted, Roger.

Just a thought that popped up in this thread: there are multiple approaches to ALS (or any terminal condition) from the emotional standpoint. One strand is fight on -- no white flags -- etc. Another: it is what it is -- we're not promised tomorrow.

Everyone has some mix of these, and we see that here. It is not nearly as simple as fatalism vs. activism, because how we feel and how we act aren't the same thing. The point is, both strands are equally valid because they simply reflect what works best given who we are and where we've been.

Best,
Laurie

UPDATE:
Saw my ALS specialist at Stanford about 10 days ago to review the spinal tap and and other test to discuss my case. It is very complicated due to the fact that I have several auto immune diseases, Rheumatoid Arthritis, Multiple sclerosis, and Myasthenia gravis. I also had to have brain surgery for Trigeminal neuralgia. He is being very thorough before he makes a final decision. Since there are several disease that can mimic ALS and he wants to be sure.

I have clinical weakness on the left side in foot, leg, arm etc. Extreme muscle cramps in both hands, and feet with overall cramping in my calves and arms. Fasciculations started on my left calf and have spread to my right leg and up both legs. Used to play musical keyboard but had to stop since I was not able to play the keys with my left hand. Just can't press the keys on the musical keyboard and computer typing is done with my right hand only.

From 1953-58, I was born and raised on a Department of Defense military base where they did testing of ALL the biological and chemical weapons ever used. These tests were outdoors and we lived right on base. Everyone was exposed to the chemicals. My father died of a central nervous system cancer and my brother has serious neurological problems, my sister has three brain tumors and a neurological problem that they can't quite figure out. I was born and raised there the first 5 years of my life. Most of the auto immune specialist feel there is a connection between the exposures and the diseases.
The dr. has started me on IVIG for 4 days the first week and them once every 2 weeks for a few months. He is hoping that this will improve some symptoms and help clarify the process and follow protocol for a proper diagnosis. Will take 2 to 3 months before the IVIG will show if it is working and it will probably help my MG
So far nothing has changed about the doctor's belief that it is probably ALS and none of the test are showing other diseases. He is an ALS Neuro muscular specialist and has had my case reviewed by other doctors who also feel ALS is a strong possibility.

Has anyone been diagnosed first with MG and then ALS? Are they connected in anyway?

Just trying to be patient and wait for the process to unfold. Every week the symptoms of weakness, not being able to control hand and finger function, and the increase of cramping, twitching and cramping pain appear to be getting worse.
Has anyone else had this type of journey when getting diagnosed? The doctor has told me that I do have a serious neuro degenerative disease, but we just don't know which one.
For now trying to prepare for the worst and hope for the best.
Wishing everyone the best and stay strong.
Roger

There have been people with both mg and als. The most famous case would probably be the Israeli rabbi who received compassionate use treatment from brainstorm. I have heard of one or two others. I believe it is considered bad luck rather than a connection.

I am sorry for all your family’s suffering.

Good luck with the IVIG

Anyone else exposed to very toxic substances and chemicals and then found themselves diagnosed with auto immune disorders (probably more than one)?
Anyone stationed at Dugway Proving grounds in Utah?