ALS moving fast

[MichaelJ]

Hello,
Yes my doctor is Dr. Sivakumar, he has offices in St. Joseph’s Hospital and an office in Scottsdale. Which trial are you attending at Good Sam? There is a trial that I will be attending at Good Sam too, so I might run into you during the trials.
Most of the problems I have is dealing with the failure of my body I am not able to do things today that was just able to do two maybe three days ago. It is so frustrating at times to know that I can’t even help move myself at times because I just don’t either have the strength or the agility to do what is needed to move. I am well overdue for a change of luck and something has to change and make it much better for me but I guess I will have to wait and see.

Mike

 

[MichaelJ]

Hello Carolan,
I commend all the people who are forced to take care of people with ALS it’s such a terrible disease and the fact that there seems very few people really are interested in eradicating this disease astounds me. But hopefully we can generate more support and try to get more funding to help in the research and eradication of ALS.
I’m trying to learn as much as I can about to do disease but I find it to get overwhelmed with all the literature that is been sent to me so far and I’m going through it book by book. Most of the information into reaffirming the information that previously read and it’s a rehashing of the information I’ve already read. But I am getting into the habit of writing questions down now sir so I can ask the doctor when I see them.
I have started into a pretty good vitamin regimen now. I am trying to find out what other vitamins might help other food additives were ways of increasing my protein. But I can’t figure out is what is the correct amounts in some cases.

Mike

 

[quadbliss]

A Spiritual (not religeous) Practice

Mike,

Applying this principle is very helpful when confronting a difficult life circumstance such as ALS. If you habitually focus on the "bad things" that are happening to you and repeatedly cultivate negative emotions, the Universe will dutifully provide you with more situations that generate these thoughts and feelings. On the other hand, if you work to cultivate positive thoughts and emotions, even gratitude, the Universe (God) will comply by providing an abundance of positive experiences. It (he) will manifest more things for which to be grateful. I use my mind (the only thing I have left, but also the most powerful tool I ever had at my disposal), to deliberately create peace, understanding, compassion, and well-being in my life. This really works.:-D

Mike

 

[vmd]

"Fortunately I have been able to see a large quantity of the world not everything I wanted to see but a fairly large quantity. I’m still wrestling whether I should continue working or not deep inside me and I want to work but then again I think it is the weakening conditions and how my muscles were giving up on me that is making me think that it is prudent for me to stop work now. But I have the challenges of paying the mortgage, I need to find transportation where I can move my electric chair into, and of course there’s my healthcare. I’m not sure where my funding is going to come to pay for everything that I need, I know the there are a lot of organizations out there that loan things out and have grants but the to haven’t been able to tap into those yet and I guess that is my next challenge. "

Mike, I empathize with you. I am solely financially responsible for my young daughter and my ex-wife, diagnosed with breast cancer. I will have to continue to work until I can work no longer. I don't believe I really have a choice, but to do this.

quadbliss:

I have been thinking recently, that even when I can no longer move, I will still be able to pray. This idea has brought me much comfort.

 

[CindyM]

And try not to keep mental lists of all the things you need to solve, Mike. It just overwhelms you. Better to make one long list (so you will have some direction) and put it away as soon as you select one small thing from it to work on. Now you have 2 tasks at hand, and only two: work on the thing from your list and work on keeping positive and feeling grateful, like Quadbliss says. His idea will make the first task go easier. Completing the first task sets you up to do another. Pretty soon everything is working out. :-D Cindy

 

[MichaelJ]

Hello Carolan,
This my doctor did not really go through the symptoms that did not match except for one or two. Most of that I think was due to the fact I was pretty much traumatized during the session. So a lot of it was kind of a sense of euphoria in that I truly do not remember our want of what transpired after he gave me the diagnosis. I’m hoping now that I’ve had time to think about it and some time to talk to other people that I will be able to put together a list of questions and I think that would be one prominent question that I need answered. So now I have the daunting task of trying to find all the symptoms for ALS and then bring those along with me to my next doctor’s appointment so I can list which are different. It could be that I have had ALS for long. A time and just had not noticed the symptoms. But I don’t know if there’s any way I can rural you tell when I actually started the first show symptoms of ALS.

I have a lot of support here; I have my wife two daughters, a son, my mother, and four brothers to count on. They have been such a tremendous help in helping me deal with the diagnosis. They have been here frequently making modifications to the home, building ramps, making changes to the furniture so I can use the House with a little more ease. Plus my two daughters of them so good in helping me with my range of motion exercises and getting me around inside the house, running errands for me.

One of the first things I did after getting the diagnosis is to start on an expanded vitamin regiment. My brother who is a chef is guiding me with the nutritional guidance and vitamins. I know we have already started to change my diet a lot of my favorite foods are no longer available to me so I have to deal with that and know that it is for the good. My hope is that maybe once in a while I could sneak in some of my favorite foods just so I can have a taste of what I loved to eat.

Mike

 

[MichaelJ]

As I read each and every post I get the feeling that there is a lot of work that needs to be done in supporting families that the breadwinner has ALS.is it time since we get each and every person to express our outrage to Congress and see if we can change the tide. I know is I get weaker and weaker I find it harder and harder to do even the most mundane task. I find it even harder to open up an envelope. While I know that I can do a lot of task using the keyboard and a mouse I know the day will come where this will not even be an option for me and at that time all I can do is pray. I pray each and every night the things will change in the very, very near future. And as I talked to more and more people it is surprising how many people were not aware that ALS is still not curable. I have been working since I was 18 years old and I’ve had steady employment that entire time. Now that I find things are really going my way I am going to be robbed of that enjoyment. Next April I will be celebrating our 25th wedding anniversary and I was planning a cruise. But the likelihood of going on a cruise at this point looks kind of dim, I am hoping that I will be able to go but I have to wait and find out. My daughters are signing us up for an ALS walk that occurs in January, we are trying to get all of our friends, there friends, family, and of course friends of family to attend.

Mike

 

[771]

Mike,
Go ahead and book that cruise, and tell yourself that you are going to have a great time! I find, that if I have something to look forward to, that is a positive thing (NOT ALS) ,it gives me something to push myself torward ,and makes me think positve about the future.
RON