dbach

Hi Darryl,
My dad started having problems about two years ago with shortness of breath when he went for his long walks. We thought it was because of his heart at first because he has two stents. Then last summer he had a hernia operation and then in December his gallbladder removed. But, the worst part is he started to fall around Christmas time. He then had numerous falls in which his legs would totally give out on him. He fell completely down all the stairs to his basement. Luckily, he didn't break anything. He went to a orthopedic surgeon because his back was hurting. The doctor sent him to a neurologist who referred him to another who confirmed he had ALS. His arms are getting weaker and some fingers are permantly bent and he can't straighten them. It's now hard from him to grip things. His speech comes and goes. Do you take Ritulek? Are you still able to work?

Hi Darryl,
How are you? We are sending our youngest son Eric to visit my dad (who has ALS) in Dallas Oct 4th-9th. My dad is staying about the same currently. He was diagnosed in May. My dad uses a walker in the house and a manual wheelchair when he goes out anywhere. He still eats on his own and has maintained his weight even though he's very thin. He never was too short of breath but does use a bi-pap at night only. He sleeps much better with it. He does take the drug Ritulek but we don't know if it helps or not. Drop me a line anytime and tell me about yourself and how you're doing. Take care, Kim

Hi Elaine:
Thank you, she did send it my way. I've emailed him and got a response. I was a bit concerned as some of the correspondence wasn't grammatically correct, so glad to hear they are legitimate.
Talk soon Darryl

Hi,

i sent you Tom's invitation to survey - via your sister cuz I didn't want to post it openly on the forum for fear of being booted off. I checked out the company thoroughly - and he is legit. In fact, he's a very nice man. A few PALS have agreed - my interview is next week. Once you get PM privileges, I'll send you more details, but I gave your sis all of the contact information. It's basically to determine the need and benefits of out reach programs relative to trails in the future and the survey is global in scope.

Hi Darryl
Ha! I knew what you meant. Feeling better now. Thanks for the encouraging words. You are right ! Spent yesterday at my Mom's 92 BDay Bash - all 6 of us kids made it- she & my dad glowed. We face decisions - that's why I've been so upset. We have to move- our current home is a 2 storey condo. We've looked in our building - but no single storeys available. It then occurred to us that our reluctance to leave this building - was really masking our fear of leaving our home.. and our life as we know it. So, we may sell and move to my home town- where my siblings. Cornwall is only an hour away-and my hubby could work from home and commute twice a week. That way we'd both have the support we will need.

There were 2 things I wanted to say - the first I sent by way of PM via Rose today and asked her to email you. The second is what I found out about funding of rilutek. If you post 6 more times on the forum - I will be able to send you private message. So much easier! Ha

Hi Darryl -
Just came back from clinic. I've been better! Tough visit (emotionally) but necessary, I think. We're considering counseling too at this point. Gosh Darryl - we're on the same wavelength. I have many things to think about... was offered the rilutek today. I'm not sure about taking it - will research some more. I'm gonna look up counselors (bio's) in town - and then decide. I hear ya on the bad days... this is the worst day I've had since the diagnosis day. I promise to be more chipper next time we "visit". hang in there, my friend.

Good to hear from ya! I googled the book - and ordered for $2.00 from Amazon. (no Kindle edition - too old) Interesting guy... read a transcript of CBC's Peter Gwowski 1993 interview. Thanks for the lead.

Yep - wishing for a miracle - and if it came by Christmas - that would be sweeter even.

Are you still working Darryl ? I recall you worked for a cable company? These days, I wonder how on earth I ever worked full time and kept up the house and still had time for lots of activities. The days run away from me.. and often I've really not done a whole hell of a lot. Frustrating - but getting used to it. Think it's a combo of fatigue and no motivation. My goal this week is to "get back on track"(not the running kind- LOL). Take care Darryl and enjoy the autumn. It's gorgeous here... trees are just slightly changing.

part 2 of today's message
I was feeling down after their call... I booked another trip. Leaving next month for France/Spain/Portugal. It's a cruise- cuz it's easier for me to manage. Anyway - the highlight for me is going to Fatima... you never know- miracles happen there! LOL. Do you still miss running? I do - it's the single most thing I miss - especially now - cool sunny morning. Instead, I'm getting fat! Trying not to fret about it. More important things to focus on. I'll let ya know how my ALS clinic visit goes. Glad you went to the Halifax conference - you're a stronger person than I am. I can't do that yet....
Have a good weekend... if you post a few times- you'll get "private"messaging option - which I like much better. I think you have to post like 10 times... so you have another 6 to go.

G'Day -

Great to hear from you. You sound really good. My neuro didn't prescribe Rilutek - I didn't pursue it with him - had too many other questions. Could be Rilutek works best on younger people - such as you. I'm 58 so maybe that has a bearing on it. We have no insurance - so unless that drug would cure me- I'd rather do other things with the money whilst I can. It's a matter of personal choice, I suppose. I'm on Neurontin for spasms - that stuff is wicked (for me). He said I could take up to 3X/day - so far, I've only taken it at night (twice). It works - but also makes me SUPER groggy for hours. My plan is to take it earlier at night so it wears off earlier. (I've never been a pill popper so maybe that explains the reaction). Good thing is that I can take it as needed. I take Ativan, once in awhile if I'm anxious. Have you been to the ALS clinic yet? I go this Monday for 1st time... am a bit nervous, but other PALS told me it's pretty good and liberating in some ways.

G'Day Darryl -

Glad you had a great time at Disney. I hear ya about return to reality... I daresay - I felt symptom free whilst playing the slots and drinking Coronas last week - that is, until I got down from the perch. Not sure if it was too many beers, the "shock"at losing money (LOL) or the ALS - but those first few steps were jelly. LOL. Wow - your family's at either end of the country - that's a hell of a distance- your Mom must have been thrilled to celebrate with you +++ there's nothing that compares to a big MOM hug. Are you working? If so,good for you!! Well - that's it for now - best get ready for church now. Drop a line when when you can. Hang in there!

Hi dbCH,
my name is Tom and I am a market researcher and have a project that involves both ALS patients and their support network in Canada. The research takes 45-60 minutes over the telephone and I am offering $100 for your time and participation. If you are in Toronto, I am also looking to speak with people face to face in a downtown facility.

The research objectives of the study are very broad and no personal information is asked of you. Specific areas of discussion focus on the following:
1. Attitudes and behaviours towards ALS
2. How the ALS condition is currently managed
3. What patient services are available and being used

Please contact me if you are interested in participating or if you know of anyone that may be interested in participating in this study to better understand the challenges of living with ALS.
With thanks
Tom
[email protected]
www.mcwhirter.ca

Ahoy Darryl,

So - how was Disney? I'm sure you had a great time and the kids must have been deliriously happy. Drop a line sometime - would like to hear about the trip. Hope all is OK with you.

Darryl,
Thanks for the links.
I have been reading quite a bit about "Brainsorm" and am very interested in keeping an eye on their progress.
I emailed them last week. Of course, no response, but I'm going to keep trying.
Cheers,
Casey

Hi -

Checkin' in - how are you? Are the kids counting how many sleeps for Disney? So exciting! All is well here - Canada Day was hot so it's the first year I didn't go to the Hill. Did go to the Musical Ride though. They also had a dog show which was short, but pretty darn amazing. Other than, laying low in the heat of the day. Thank goodness for A/C. Hot in Glace Bay? Going to a friend's cottage for a week - should be fun. We're about to find out if our city dog can swim! Drop a line when you can.

Hello.

Ha! f/u in my jargon is followup appt. I'm to see neuro again and he told me that he'd check EMG byt that it would be different test the the first one. Also, he said the f/u is to discuss future needs (I'm guessing ALS clinic). Last night, I hosted a party for 40 of my gal pals whom have all been so supportive. It was a great night! We had a heck of time - and I really wanted to do this while I can. Am tired! (hungover?) - but so lucky too. Still twitching.. but praying hard too. Haven't been tested for lung capacity... dreading it. Heard of metal too .. not sure about that. My husband is researching - cuz I can only take info in small bites right now. Feeling "normal"todaY, woohoo