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thedish81

New member
Joined
Jan 15, 2013
Messages
5
Reason
Friend was DX
Diagnosis
11/2012
Country
US
State
Indiana
City
Schererville
Hi. My dear friend has recently been diagnosed with Motor Neuron Disease. Right away she went into denial which I see as completely normal with such a devastating diagnosis. I am somewhat knowledgable on the disease. Her's started in her lower extremeties. She began falling last spring/summer. It's now in her upper area and her speech is slowed. She also has a persistant cough that is quite concerning she's had that for about 6 weeks. It's been 2 months now and she has not made her appointment to see the specialist. I am concerned about her. How she is getting through all her daily routines. The idea of her driving scares to death. Can anyone out there shed some light on how to communicate your concerns with your loved one.

Thanks
Trish
 
Trish how sad that your friend is so young. Will she let you visit? I think if you could visit face to face and just tell her exactly what you told us, that might impact. You could offer to go with the to the specialist and be there for her. I'm sure she has so many feelings that are whirling through her head. Just try to think of what you would want if you were in her situation. You can't go wrong with showing love and concern and being honest. All the best to you and your friend.

Laurel
 
You are a great friend. After my initial diagnoses, I pretty much lived in a fog for about six weeks. Outwardly, I was in denial too, but deep inside, just scared as heck. I could only learn about ALS in tiny bites. The thought of attending the ALS clinic was the scariest... I thought if I met someone in advanced stages, I would freak out. Finally, little by little, and mostly because of this forum, I faced things and saw things in a better light.

I tell you this to provide you with a bit of insight as to what may be going on in her head. Denial is a cozy place.

With that in mind, I suggest you arm yourself with courage and knowledge and stress that it is very important that she prepares for her future, and that you will be there with her every step of the way. While you cannot sugar coat the reality of this disease, you can give her hope. I hope, to this day, that my ALS will arrest. It is possible. But despite this hope, we are planning ahead in terms of financial planning, housing, equipment etc.

Good luck and if it's helpful, tell her about the good people here.

Oh and BTW... I still drive. No problem and it sure beats walking!
 
I'm also 31 years old and while I haven't been diagnosed with anything and pray that I come away unscathed, it's maddening that this disease strikes people so young. Does your friend have a significant other or close family to provide help? The thing that scares me personally is not so much just an ALS diagnosis, but the fact that I'm living out in Los Angeles by myself without close friends or family to lean on. Either way, she's going to need as much help as possible, so find a way to reach out to here in any possible.
 
Hi,
' Counselling ' helped me a lot. The first session was difficult as I was in tears in front of a stranger. But it is a ' cathartic ' experience. In counselling sessions I speak 98 % of the time and the counsellor 2% .The only place on earth where I get such a deal!

Mohan.
 
Wow you all are amazing and having given me some insight into her world. I've met with her sister yesterday to try and figure out away to help. We're are still met with a so much reistance from her. We plan to meet over the weekend to have pizza and good conversation. Hopefully we can fill her with joy and love. Any suggestions you can give to help nudge her along is so greatly appreciated! I am so glad I found this sight. I recommended it to her sister as well.

Trish
 
Do you think some just give up? I'm frightened that she won't put up a fight. There is no guideline to the aweful disease.
 
Try looking at the ABC' s of ALS which you can find on YouTube. It's in 3 parts and very informative. The presentation is direct, but sensitive.

Do some people just give up and go without a fight? I have heard that is true and this attitude is not specific to ALS. It's a personal decision, I think. There is life after diagnosis, but one has to choose to grab hold of it.

You are a good friend indeed.
 
i have witnessed a few who just throw in the towel. there are things you can do to extent life expectancy. these can be taught to you at the als clinic. ask questions, breathing, diet, exercise, drug trials and most of all maintain good attitude and get out of any depression mode
 
You have to keep your hope alive.There are all types of ALS.Fast spreading or slow spreading. I have met people who have had the disease for 12 years. The famous Stephen Hawkins has had the disease for over 50 years. Finally some bright spark of a Researcher can make a breakthrough. I think the challenge is to have a life despite the problems. She is blessed because she has a caring family & friends. Quite often you live for the sake of your family & those that love you.

Good luck & hope things work out.

Mohan
 
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