Things you'd like to say to people, professionals, and relatives about ALS

[KimT]

Dear Kim,
Thank you so much for doing this.
What a meaningful action on your part.
I have provided you with some of my reflections via other
means, as I have not been up to organizing and putting it all in
a well written format.
I hope a few things I wrote to you may be of help.
Thank you for your creativity of thought and purpose.
Thank you so much for putting such an important project into play.
Thank you for the true time and real energy you are expending to do this.
Thank you for 'making this all count'.
For all of us around the world, forum members or not, and for those who are to
come in the future who will be afflicted with ALS.
Thank you for making a true and lasting difference.
Sincerely,
Laura.

Laura, I'd like to post your e-mail in its entirety. It was very powerful.

 

[KimT]

Picture of me right before all this began. Picture after the first fall. I had no idea how or why I fell.

I have to count for something. This project is all I know to do.

 

[Bob R]

We also need to acknowledge the difference among various countries and even among different States in the US.

Please keep posting. I can separate facts from emotions but emotions are extremely important to acknowledge in this disease. Today I spent an hour crying via FaceTime with my therapist.

I also think it's important to have a positive mental attitude. If you get depressed, try a little pot. It helps me from time to time. And a positive attitude makes my life a little better every day. And don't give up. Be a fighter.

And you're right that money makes things easier. As does a great care giver. My wife should be elevated to saint hood for her dedication to my condition.

 

[BlueandGold]

Kim I'm so sorry about your fall. My legs are getting weaker every day. Had my first consult with a power wheelchair rep today. She said likely two or three months to get the chair. Just have to rely on my walker. Just wish it had wider tires so I could navigate my gravel driveway.

Many prayers for you Kim.

Vince

 

[affected]

What I find interesting about Hawking comments and money is that for the first 20 years he had his version of ALS they had NO money, Jane was doing it so freaking tough, and they didn't even have electric equipment.

I would think that first 20 years of care was pretty important in his overall longevity. He is purely an outlier, but putting it down to money is not factual. (Jane wrote a book and it is an incredible insight into the life of a CALS)

Bob I see that you did indeed question that research statement oops!

Great thread

 

[fionae]

Kim,
It breaks my heart to see you with your injuries.
I'm so sorry.

But thank you for the message it provides.

Ever,
Laura.

You already count for so very much...
This project is simply an addition to all you already count for.

 

[KimT]

Kim I'm so sorry about your fall. My legs are getting weaker every day. Had my first consult with a power wheelchair rep today. She said likely two or three months to get the chair. Just have to rely on my walker. Just wish it had wider tires so I could navigate my gravel driveway.

Many prayers for you Kim.

Vince

I'm so sorry, Vince. PEOPLE NEED TO HEAR THINGS LIKE THIS! Expedited services need to happen ASAP.

 

[KimT]

What I find interesting about Hawking comments and money is that for the first 20 years he had his version of ALS they had NO money, Jane was doing it so freaking tough, and they didn't even have electric equipment.

I would think that first 20 years of care was pretty important in his overall longevity. He is purely an outlier, but putting it down to money is not factual. (Jane wrote a book and it is an incredible insight into the life of a CALS)

Bob I see that you did indeed question that research statement oops!

Great thread

Tillie, I didn't mean to imply that Hawking survived because he had money. I'm sorry. I was trying to say two different things in one post. I guess I should have said that I KNOW more money equals better care. A friend and colleague of mine inherited in excess of $25 million and was already wealthy before this inheritance. She didn't have to wait for Medicare or some other public assistance or even her insurance company to get a PWC and she could afford 24-hour care by RNs specializing in ALS. She could have a Trilogy in every room and a driver and CNA to take her anywhere she needed to go. Her family and friends could focus on spending quality time with her, not physically exhausting themselves trying to help her get through each day. Did this quality and quantity of care extend her life? I don't know. What I do know is that she attended an outdoor concert on the river just a few weeks before she was set free.

 

[KimT]

This is the original post I put on FB last weekend. The responses, especially private messages, gave me the idea for this thread and a document composed by and for PALS, CALS, and everyone associated with them. I've had others with ALS reach out to me, one man with MS who wondered if MB12 could help him (nothing else is and my local primary care doctor is having success in treating MS with high dose MB12 and she has been doing this for years.). Along the way, the document can be a work-in-process and I would like to send it to the President, Congress, medical associations, Oprah, Dr. Phil, and anyone else who might be a voice for ALS. But, I plan on sending it out locally and to representatives in the State of Florida ASAP. Thank you all for your responses. Keep them coming. I will cover the cost of printing, postage, and any other necessary expenses to get the word out.

Dear Friends and Family,

I’m not even sure how to say this but I’ve never been short on words, so here goes. Last year, I was diagnosed with ALS (amyotrophic lateral sclerosis also known as Lou Gehrig’s disease.) You probably remember the huge fund raiser that went viral on FB called “The Ice Bucket Challenge” less than two years ago. This “challenge” raised over $100 million to help fund research and assist in addressing awareness and needs of those suffering with ALS. I would encourage anyone who cares about me or is interested in understanding ALS or would like to be part of a movement that eventually finds a cure for this horrific, fatal disease to visit The ALS Association

Unfortunately, this diagnosis came on top of other health issues I’ve been fighting for years including a bi-lateral loss of vestibular function, a heart arrhythmia, an autoimmune disease that affects my thyroid, fibromyalgia, and bi-polar disorder. The first thing I was told post-diagnosis was to get my financial affairs in order and live every day to the fullest. Frankly, these two things have been mutually exclusive. I’ve had to fight with insurance companies, produce hundreds of pages of medical records going back 10 years and go to a pre-trial mediation connected with a lawsuit involving a fall I had prior to my diagnosis, talk to countless representatives from my place of employment, the State of Florida, insurance companies, and Medicare all the while getting conflicting information, letters that contradicted the verbal assurances I received, and many other roadblocks. Early on I was told that stress could speed up the disease progression AND disease progression would cause many challenges including stress. At this point I’d like to thank my counselor, Dr. Timothy McNeil, Director of Genesis Counseling Center in Ormond Beach, Florida. Tim helped me in the battle with my insurance company and continued to see me regardless of how much or when he would get paid.

After my diagnosis I quickly saw a common thread in those dealing with people who have ALS (PALS.) I was at a pulmonologist’s office when the doctor confused me with another patient. The nurse said, “no, that’s the ALS.” I’ve been “comforted” by “I think you’re going to pull out of this”, “You never know…..doctors make mistakes”, “you’re going to be the next Stephen Hawking”, the list goes on, but you get the point.

The ONE thing I know is that my faith in God and His promise for salvation is what has kept me going. I believe God is sovereign and we have disease and other hardships, not because He gives it to us, but because we live in a fallen world.

The reason I’ve held off posting anything on FB is because I’ve already seen this diagnosis drive people away or, at least, distance them. They’re scared and I don’t blame them. They don’t know what they can do to help or even if they want to be around “it.” Don’t shut me out because you don’t know what to say. I don’t know what to say, either. Don’t forget that I’m still me. Right now, I’m living alone with Ace, my Toy Fox Terrier. I’ve always been the caregiver and the one who solves problems. That will have to change. I don’t know how or when but I do know that God has a plan for me and I have to trust Him to get me through. I also still believe in miracles. Some come in the form of healing, some come in the form of people.

 

[vltsra]

Dear Kim,

Thank you for this thread. This is so helpful for both PALS and CALS.

You count for so much.

V

 

[affected]

Hey Kim thanks for explaining. It's interesting however that I read this kind of statement about Hawking all over the net. When Chris was first diagnosed we even discussed the fact that he probably lived so long because he had this huge 24 hour team he could afford.

Jane's book, was such an eye-opener for me on that one

I just love this thread even though I've not actually thrown anything in because of the brilliance of so many posts here! I'm looking forward to seeing what you compile out of this, it's going to be powerful

 

[Buckhorn]

Kim, I'm so sorry about your fall! Thank you again for this thread - it is SO POWERFUL! I also very much appreciated your comment "At the very least, if a group is dying, shouldn't they have the right to participate in a more expedited trial after Phase 1?" I think the right to try laws should be expediated in certain cases. My husband says he would "jump at the chance".

Regarding your comment "I have to count for something", you show by your willingness to be so helpful to others on this forum that you DO INDEED count for so much!! I totally understand your comment though. My husband keeps doing things that I ask him not to do (i.e., this a.m. he carried a laundry basket of clothes up the basement stairs before I knew what was happening). I keep telling him about the posts here on the forum about people who suddenly fall and have no warning. He keeps saying "just trying to be useful". He has always been a "doer" and is sooooo frustrated by his limitations, and in a minor state of denial about what will come. I can't imagine taking this as well as he is, and I know I would be defiant as well.

 

[Bob R]

Kim, I'm so sorry about your fall! Thank you again for this thread - it is SO POWERFUL! I also very much appreciated your comment "At the very least, if a group is dying, shouldn't they have the right to participate in a more expedited trial after Phase 1?" I think the right to try laws should be expediated in certain cases. My husband says he would "jump at the chance".

Regarding your comment "I have to count for something", you show by your willingness to be so helpful to others on this forum that you DO INDEED count for so much!! I totally understand your comment though. My husband keeps doing things that I ask him not to do (i.e., this a.m. he carried a laundry basket of clothes up the basement stairs before I knew what was happening). I keep telling him about the posts here on the forum about people who suddenly fall and have no warning. He keeps saying "just trying to be useful". He has always been a "doer" and is sooooo frustrated by his limitations, and in a minor state of denial about what will come. I can't imagine taking this as well as he is, and I know I would be defiant as well.

I completely empathize with your husband. Until recently, I was a hands on contractor. I could do anything around the house. Luckily, I just finished remodeling my home completely just before I got sick. Now it kills me to hire people to build a ramp, install grab bars, etc.

And I agree the snail's pace of clinical trials and investigating new treatments, is frustrating. If it were up to me, once the safety is confirmed, I would give it to 1,000 sufferers and keep track to see if it works. And stop qualifying us. No trial if you can't pass our breath test, or if you were diagnosed more than two years ago, etc.

 

[swalker]

Here is another item.

I hate the one-word phrase "What?".

Many folks say this almost instinctively when trying to process information. It is their way of buying time to prepare a response.

For someone who hads difficulty talking, hearing "What?" become common place.

My recommendation to those listening to the talking-impaired is to try very hard to piece together what might have been said; to solicit additional information by asking questions that can be answered with a yes or no; and to wait quite awhile before asking for the phrase to be repeated.

Steve

 

[karla r]

The neurologist I dumped actually said to exercise more. When I explained that I used to walk 2 to 3 miles 3 times a week, and only stopped when I actually could not do it, and that daily I push myself as hard as I can, for as long as I can, even though it may not seem like much to him, he said try harder. It actually upset me to the point where I started over doing it, again, for example, using my hands and arms until they just would not move. My friend and son confronted me, about pushing myself too hard, and then I get to where I can't even lift a coffee cup was hurting me, not helping.

There is also one friend who just insists I am going to be miraculously healed, and regain all I have lost. She simply refuses to accept that this is going downhill not up, and no matter what the end results are, my muscles are gone. They are not going to grow back, and let me be the way I was. It's ... Frustrating.