Tellng the barber

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halfin

Senior member
Joined
Jun 29, 2009
Messages
540
Reason
PALS
Diagnosis
08/2009
Country
US
State
CA
City
Santa Barbara
I was getting my hair cut today, and my voice was weaker than last time. It was hard for me to talk clearly especially in the noisy salon but I managed it. I was wondering if I should explain about ALS, and if so, how to do it. How have you handled telling people that you know casually like that?

Part of the problem is that I have actually told very few people face to face, just family and doctors. My wife has been in charge of telling people. But she uses a different haircutter, so the ball's in my court on this one.
 
hal, i can't wait to hear the responses to this one...i am afraid i will cry if i have to talk about it. i told my son's first grade teacher, and i cried, of course, especially when i thanked her for helping my son learn to tie his shoes because i can't do it for him.
 
Having heard this one before, I can tell you that people will definitely follow our lead. I can get the tears reaction myself. Have had the same one with teacher's myself. I think that sometimes it is really good or really bad depending on what the person knows of MND. I think it is hardest when we first tell them, but then they wil settle in and it will get easier. I usually judge it on the person who I am telling, if they seem to need more info, and I am up to giving it I do. If they seem put off by learning more well then I follow that lead also. Never easy to figure out. I change daily on my approach with people. Good question, hope to see responses.
 
I have a very hard time to share my diagnosis with others; only family and few of my close friends know about it.
I haven't told people at work....which I will be doing soon.
It's interesting that you mention your barber; I was getting my hair cut this AM and my hair stylist commented that i lost weight and asked if everything OK. I said that I've some health issues, but didn't go in details.
I'm pretty private person and don't want to cry in a front of people that I'm not very close to.
I'm contemplating an email to my co-workers telling them about my diagnosis and providing a link to ALS website.
Actualy, I've to thank Glenn for sharing this idea with me and Rose for her continued support and guidance.
 
I was open and honest with everyone. When they asked I told them. It is not our responsibility how they react.

When they see there is something wrong why pretend their isn't - they already know.
 
Hey Hal. I haven't even been diagnosed and hope it's not ALS, but I am already facing this problem. If I do have ALS, it is bulbar onset and my speech slurring and facial twitches are my first symptoms. I have to administer an oath at the beginning of each deposition and I fear I sound like I've been drinking.

I made up a white lie and have been telling my lawyer clients (jokingly) that I haven't started drinking in the morning, I am just having speech difficulties probably due to a medication. So far that seems to have sufficed. I know if I had to tell them what I fear this is, I would cry and would probably lose clients. God know I can't afford that, not with all the medical tests I'm having.

Sharing your diagnosis may be one of the few things you have complete control over. Do it when and how you feel like it, and give yourself permission to make up a story to keep the questions and assumptions of others at bay.

Karen
 
I was open and honest with everyone. When they asked I told them. It is not our responsibility how they react.

When they see there is something wrong why pretend their isn't - they already know.

I agree with Joel , I too have done the same.

I wish they would not ask , as I hate when their face drops or the tears start. If they ask , tell them straight up. In a small town , there are no secrets and thankfully most people now know.

Glen
 
When you do tell someone, follow the "I have ALS" with "Do you know what that is?" Then take the opportunity to educate them about this disease. We all need to help raise awareness. A few years ago, Autisim was a disease a lot of people did not know about, and now it is in the news all the time. Lori
 
my daughter in law is a barber ,my son is her husband and she loves him dearley,.. and cries very easy so do not be suprised if the people you feel you have to tell might have a family member with als , and when you say it they may cry with you ..my daughter had a customer whos wife had als they found out in july ( son and wife ) and the mans wife died in august , and everytime he came into the shop she would start crying and leave ,her boss caught on quickley to that and let her go...but she was not only crying for her husband , she was also crying for him . so you may never know who will understand completley..
 
I was like Joelc and Glen, open and honest with all.
Living in a small town and knowing most people it was no good hiding the issue.

Most people now know both due to me and the family telling them and the recent reconition i received for my community work which i have had to give up after 30 odd years. (hard to now get on fire trucks and fight fires with either a cane or walker):lol:

cheers
Peter
 
This was something that I had a hard time with at first. We decided that once I had told all of my family and friends that I would just be open and honest with everyone else, It was and still is hard because my speech was the first thing to go so what I did was make up an explanation card that explains why I cant talk. It has my name, address, phone number and email address on one side and the other explains that I cannot speak because I have ALS or Lou Gehrig's Disease, that I use an electronic device to speak and that I can hear and understand fine. Something else that I put on the card is the website address for the Canadian ALS Society

http://www.als.ca/

If the person doesn't know what the disease is they can probably remember the address and look it up later. I have had people come up to me and tell me that they looked it up after reading my card so I am doing a little bit to spread awareness.
 
Honesty is ALWAYS the best policy! We are completely factual and honest with everyone. We too live in a little town so everyone knew within nanoseconds :] Come on guys, we have to get out of CLOSET! It isn't like we did anything to cause it [oh, except for all of the cigarettes that all PALS have smoked!] We have to be the Advocates and not let it be swept under the rug or locked away in the closet like some dirty little secret. It is the reality of our lives and REMEMBER, PALS have the NICE GENE Disease. :] We need all the public awareness and support that we can find.
 
I agree with the resonses, just tell people and let it be known. They probably have an idea something is wrong anyway. We, my husband and I, sent a general email to extended family and friends when I was first diagnosed. We send quarterly follow-up emails after my ALS clinic appointments. This last one was a bit harder as the doctor says my breathing has deteriorated very rapidly and his prognosis is six months left.
 
I agree with the resonses, just tell people and let it be known. They probably have an idea something is wrong anyway. We, my husband and I, sent a general email to extended family and friends when I was first diagnosed. We send quarterly follow-up emails after my ALS clinic appointments. This last one was a bit harder as the doctor says my breathing has deteriorated very rapidly and his prognosis is six months left.

You're not considering a trache and vent?
 
Soon after being diagnosed I "came out" to my Moms group at church. About 10-12 women were there. I cried a lot, some of them cried, some didn't, but many told me later they went home afterwards to google ALS and learn more about it. Those who were there helped spread the word to everyone else which saved me a lot of trouble. :) It was an emotional morning but really cathartic and afterwards I felt better emotionally than I had in months!
 
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