Karin Bolette

Left a message on my board.

Hi Karin!! I was just thinking about you too!!! Oh joy a spinal tap!!! NOT FUN!! And the rest not until June 2011?? HUH??? What is the wait? Oh hun, I hope you are able to enjoy the holidays despite everything that has gone on over this past year for ya. Keep me posted okay!!!! Holiday Hugs, Kari

I guess after this long, there's not much point in complaining. I can still get out, drink and play silly ass once in a while so things aren't all bad. Son and family arrived home early for Xmas and we got the family picture done early enough to send everyone a picture xmas card. First one in years. So things aren't bad at all. Take care.

Hi Karin. I'm not sure about the blood tests. Myrna at Sunnybrook ALS Clinic might be able to steer you to where it's available. Sorry you're not getting any definite answers. Did you see Dr Medroni at St Mikes?

Hi Karin,
So sorry I havent been on much. My daughter has been very ill. 5 hospital visits now since June. She is bleeding somewhere internally, and they cant figure it out!! Already had one blood transfusion, and teetering on another one. Trying to avoid it because its not good to do to many transfusion on someone so young, its causes infections. Anyway, still more tests ahead for her, and a lot of worry on my part. God hun, I am SO SORRY!! You just sound like you are getting more and more miserable! I hate the thought of you limiting your painting! Hey are you on Facebook? My mom is on here now, and I am trying to give her some space, and just pick up messages, and stay on FB. I miss you, please keep me posted on how the appts go okay hun! Chin up!!! Hugs, Kari

Hi Karin, Yes. I have limb onset and it is to the point where I am still weight bearing but unable to really do anything for myself. While the people at the clinic tell me I have lot of strength, as a formerly very active and independent person, hearing that is actually disheartening. I feel like I am completely immobile. I am 47, married with 2 sons, 18 and 20 and a beautiful 1 1/2 year old yellow lab. My husband is my amazing caregiver. No ODSP for me, just CPP disability. Thank goodness for the ALS loan closest and ADP. Without them, we would have to buy everything on our own or do without. You're right of course about the time and thank you for reminding me. I hope you are having a great summer so far and are able to get out and enjoy the weather (when it wasn't an absolute oven anyway). Take care, Pam

Well, hun, you keep me posted on what is going on. What ever it is, I just want it to be fixable!!! Ya just never know luv!!! Hugs, Kari

Well, I would go to a different Neuro then. I had to see 17 doctors over years and years for acute pain I thought I had to just live with, and that 17th doctor changed my life!!! I know you are tired hun. It is a huge battle to go from one doctor to another....exhausting....but personally I have never heard of any type of edema that cannot be helped in some way. Of course I am not a doctor, but it just does not make any sense hun. What does your GUT tell you??????? Hugs, Kari

All of that info from a GP and not a Neuro????? Hummmmm...I would want ya to talk to a Neuro hun. Seems like they could at least get the edema under control, and give you some better answers as to what to expect. And what about the fact that if it is to act like Bulbar ALS only, why is it effecting you elsewhere??? I hate that you are in limbo like this hun, Keep me posted!!! Love ya!! Want to see the paintings sometime! Hugs, Kari

Hi Kari- I didn't know you had experienced the health problems you have. You're right this may be good. I got upset with my GP though & she is sending me to oxygen blood tests, Lung volume function testing & upper GI scope that actually measurements how where & why the throat muscles are not working. I've also had a lump behind my right ear that started as a little bump & I was told the scull can be lumpy. It got bigger I was told it was fat, now it measures 3" long & 1" wide- its sore, which might cause pressure on nerves & maybe the cause my hand weakness. She's ordered an ultrasounded to see if it is growing on the inside of my scull. So this is good. I just hate being in the grey zone. My hubbie was in the grey zone for 6 yrs before they decided to look at his blood. Anyways maybe I'll find out before the symptoms get worse. It's going to take till August before I know the whole picture from all these tests. I'll be in touch when I know something more- Hugs Karin

Hey, I sent you a PM so I could write more. You qualify now....!!! Hugs, Kari

Hi Karen, Well, that could actually be good news though right! Anything besides the deaded ALS hun. But then, how do they explain the weakness in your hands??? I know it must be totally frustrating, especially because in the back of your mind, you have settled into the fact that it is ALS and now it feels like a diversion and they are not acknowledging ALS. Now, chin up!!! What if this is not ALS?!! What if it is something that just mirrors ALS sypmtoms and it is fixable??? I know it is hard to get your hopes up, but I am praying for you hun!! Please keep me posted!! Hugs, Kari

It's A Happening!! Kay Marie will be here. Wish you were closer and could join us.

Diane Trithart is sponsoring private musical performances on her 30 acre Ranch this summer. On Sun., June 6th, Diane will hold the first “Summer Picnic & Concert on the Lawn” featuring our own home town “Pleasant Valley Sunday Band." She invites everyone to bring their blanket, lawn chair and picnic basket for an enjoyable family oriented afternoon. Grilled hot dogs & hamburgers will be offered for sale. The band plays from 4 PM till dusk. Advanced admission is $10 per person/ admission at the gate is $12.50 per person/ children under 10 years is $3.00. Proceeds will be donated to “ALS Guardian Angels” (www.alsguardianangels.com) a non-profit foundation provides life assistance for those afflicted from the disabling disease. ALS is a neuro-degenerative disorder, better known as Lou Gehrig’s disease, has no known cure. Call Tim Howell at 673-4767 for tickets and/or directions.

Hi Karin,
Thank you for your message. I am lurking a lot on this forum to get information and insight from the people who know but my method of dealing with this is avoidance so I won't "join in" so to speak, because that makes things more real (as if daily living doesn't). I am just explaining my reluctance to post. Most people do seem very friendly here. My ALS is not bulbar.
I do go to the clinic at Sunnybrook but prefer to stay more local to my area (Durham Region) for my 3 month visits. It is just easier.
I can't imagine being on my own and going through this so good for you managing.
Thank you again for reaching out to me. I can't promise to be a reliable correspondent as that doesn't really help with avoiding the obvious.
Take care, Pam

I cant wait to see them!.....Hugs, Kari