PALS without CALS

[KimT]

Good morning everyone,

I had to cancel my trip up North because I decided to try the lunasin protocol and just got overwhelmed with all that I'm trying to do.

I'm worn out to the point that I just don't know where to place my energy and priorities. I'm at a point where I don't know where the ALS leaves off and the depression begins. I'm so tired of explaining this illness to the same people over and over. If they would read The ALS Project document, maybe they would understand. You know what? They are too lazy, scared, or uninterested to read it. It takes all of 10 minutes to read. These are my friends and relatives. The medical community has received it well and it is making its way around the country but the people who claim to love me can't even take a few minutes to READ IT. I'm not asking them for money or time.....just trying to help them digest the horror of this disease. I want to quote Pete and tell them to "grow a pair." If I can go through it, you can understand it. Only so I won't have to continually enlighten them on things like why working out hard won't help strengthen my muscles or why I can't commit 100% on doing something because it depends on if I'm having a good or bad day.

I'm mad, too. I'm so disappointed at the people, who in the beginning, said they would help....even care for me, and now have distanced themselves from me.

I'm a very easy person to be around. I'm funny, generous, interesting, a good listener, empathetic, nurturing, and accommodating. I try so hard to be very positive but I really just want to say what I'm feeling and thinking. My counselor is no longer on my plan and I just can't imagine going to someone new at this time. I guess my only option would be to pay out-of-pocket. He has PhD in something else but only a M in counseling so is not covered by Medicare.

I can't stay in my beautiful condo. It's too small and would cost too much to modify. I have to go the route of getting a larger place and a roommate. I've explored many, many other options but this one works best for me....for now.

Lots of times I've started to post things here and then just deleted them before posting.

I'm just tired.

I'm fighting because I want to do anything to help the next generation find a cure. That's why I'm doing the Lunasin protocol, if my stomach and heart can tolerate it. The last study was done on patients taking Rilutek and I'm not taking it. It makes me sick. I've often thought that maybe the Lunasin was clearing the way for the Rilutek to work better or something....I know that's not very scientific but it did cross my mind.

Yesterday there was a prayer request for a 15 year old boy with ALS. It showed him in a picture. At first I had doubts but does it really matter? FALS must have the constant horror of their children getting ALS.

I've decided to donate my body to research. I'm a Christian and I'm at peace with the decision.

 

[Atsugi]

When I saw your thread title "PALS without CALS" I freaked. It really bothers me even to imagine being in your situation. Of course, I wish you luck big-time on getting a decent roommate. If there is something I could do, don't hesitate to ask.

 

[WendyWooG]

Oh Kim,
I really just don't have the right words....
I cannot imagine how difficult and scary it must be for you trying to do this on your own. It is bad enough when you have people helping you. You can say exactly what you feel on here everyone understands.
Some people are not worth having in your life if they are not up to supporting you and make an effort to understand your illness. We told my family back in September what my diagnosis was likely to be, I have not heard from my brother since he is avoiding all contact.
I hope you find a lovely home and your roommate arrangement works out.
Big hugs
Wendy x

 

[Lkaibel]

Kim, no big words of wisdom I am just sorry things are so hard. I can't imagine facing this on my own.

 

[azgirl]

Kim, at one point you mentioned a potential roommate to share expenses. That sounded like a very good option. Another option would be to find an excellent caregiver. Can you ask around for good references? My caregiver is great, and I never have to feel guilty or like a burden to anyone else when he is here.

 

[KimT]

Yes, I'm thinking about approaching the college (since I know everyone there) and see if there might be a CNA student who is looking to go into the bridge program (to become an LPN or RN) who would like a nice place to live very close to the college with a stipend and some tuition assistance. Then I can train her to use the equipment. I'm also pursuing a roommate who is also a very close friend and that deal is in the works. The other situation that I was pursuing will not work out for a couple of reasons.

I'm not just sitting on my A$$ waiting for someone to come to my rescue....that ain't gonna happen.

Of course, my backup plan is to win the lotto Saturday. I bet they'd all come running then LOL

 

[gooseberry]

Kim, One of the hardest things is when family and friends dont get it, dont want to get it, and walk away. We went thru this. It is why Steves family isnt around much ...Julien called them on it. I was chastised formletting him speak his mind....had to say he lived it....you didnt. They were at disney instead.

I have no words of wisdom. Steves dad said it was so hard to see him sick. But he came to see him. He was one of the few. His dad is 83 years old. Friends from work and scouts helped...but not much family.

I think the idea of a roommate for help with bills and companionship is a great idea. Also a cna student as a caregiver. It would be great experience for them too.

Just know that you arent alone. We are here for you.

 

[lgelb]

Hey, Kim, have you checked out Room2Care? Might find some options there.

Best,
Laurie

 

[KimT]

Yes, Laurie, that might be an option.

I'm also meeting with a lawyer and another CPA to form a not-for-profit to benefit PALS without CALS. Then all fundraising for this group can be deducted as a charitable contribution. One of my former students made it big in NYC and LA as a partner of one of the largest CPA firms. He retired in his mid-40s to care for his elderly mother. He has been doing this for about 5 years and recently his mom had a stroke so his caregiving got ramped up. He wants to help me with this project.

 

[scaredwifetx]

Kim, I cant even find the words to tell you how sorry I am that you have to deal with so much alone. Just know you are in my prayers and thoughts.

 

[KimT]

Thanks My "Thanks" button disappeared. I do appreciate all kind thoughts and, of course, prayers.

I really do understand the reluctance of people to step up. I cared for my father during the last two years of his life with COPD. I had mixed feelings. It was only my mother and me. No hospice, no other help, and my mother didn't drive. He was on oxygen and taking about 12 meds. He couldn't do much for himself during the last six months and frequently told me he wanted to give up. I was so torn up. He had a DNR and he stopped breathing but my mother revived him (twice.) When I wasn't with him, I was anxious all the time and every time the phone rang my heart pounded. When he died, my mother blamed me. She needed someone to vent her stored up anger at and I was the only one she knew would take it. He died because I honored the DNR.

A decade later, I cared for my mother as she died of metastatic colon cancer. She had moved back to our hometown after my dad died because she wanted to be around her grandkids. When she was diagnosed, I flew her back to Florida to live with me. She lasted six months and four of those months were pretty good. It broke my heart to see her slip away, day-by-day. I don't know how we both made it through that six months. i was teaching full time, writing a textbook, working on a doctorate, and taking care of her. I had a lady come in to stay with her during my night classes and I would run back and forth from home to school between classes. She could walk right up until the last few weeks but not much else. I'll never forget the last words she said to me because they haunt me. I had finished the text and was starting on the test bank. It had 3,200 questions. Her final words were, "go work on the test bank." Then she slipped into a deep sleep and died.

I don't blame my brother for not wanting to be around that. He had a family, grandchildren, and was 19 years older. My mother could be difficult. She had bi-polar disorder and was often confrontational. But she also had guts and was brave. I only found out by accident that it was taking her 30 minutes to change her colostomy bag because she wouldn't ask me for help. It only took me 2 minutes but she tried to spare me from doing it and she never complained when we ate leftovers or ordered pizza for dinner.

In a strange way, I'm relieved I don't have kids because I don't want them to see me go through this disease or feel helpless and hopeless. Some days I regret not having a big family but who is to say that it would be any easier?

 

[Ells]

Having read your last post Kim, I really hope you manage to find a viable and happy solution for your own care needs.

I will say though, the first caregiver that you hire may not be "the one" but please don't get disheartened! You will find your angel(s)

x Ells.

 

[bear1973]

Kim,
I can relate to you very much. A few months ago I posted a rant and rave myself. In a nutshell, no wife girlfriend or kids. No family that lives close by and I live alone. Factor in a history of trauma and you have a bad situation.

I have recently realized that the diagnosis of ALS is just the start as to how you respond to this disease. I would argue that the circumstances are almost more important. For me at this stage the future becomes bleak and void of joy in life. I'm on lunasin too because I feel in my situation I need some luck and have the progression STOP not just slow down. A shot in the dark.

If you ever want to talk PM me.... I would be good with a phone call if you're voice has not significantly been affected.

Bear

 

[Nuts]

Kim, I don't seem to have adequate words. Rant away. The nonprofit sounds wonderful. I so admire your energy!

Becky

 

[vltsra]

Dear Kim, your post has made me think about how unfair life is. You were a caregiver for both parents under difficult circumstances, and now you have ALS and don't have a CALS of your own. You must have inherited the guts and courage from your mother. I think the PALS without CALS nonprofit is a great idea.

V