Feeling Alone

[hopealive]

Hello All. I have been reading your postings and I find you all so encouraging. I am the daughter of a possible bulbar ALS diagnosed. I am so close to my mother and cannot hardly bear to watch her go through this. About a year ago, a very healthy 57 year old began to have trouble breathing while exercising, now speech is very slurred almost nasal, eating is becoming more difficult. As far as limb involvement none yet. She is getting her first EMG next week at an ALS clinic. The neuro here hasn't given her any conclusive ideas. I just know it is ALS from reading all of your symptoms.
I feel sad, lonely, and scared. I am pregnant with my first child due in Dec. I just cannot believe the timing on all of this. I am a strong christian and know that the Lord is working something out here, but I just feel so lost.
I guess I am wanting to know the best way to support her through this. Any ideas would be appreciated.
God Bless You All,
hopealive

 

[Al]

Hi hope. The best advice is to be there for her. When she needs a hug or when she needs to cry and there will be tears. Good that you are going to an ALS Clinic. Let us know how she makes out. AL.

 

[Tamra]

My father

Hi,

My father also has the symptoms of ALS, however the doctors cannot give a definite diagnosis. His symptoms began nine years ago with twitching and foot drop. He then began to fall down and experience muscle loss in legs and then in arms. He has become progressively weaker. He was an extremely athletic man (marathon runner) and I think that's why his diagnosis is taking so long (for lack of any other explanation, that's what I believe). He has been to many neurologists and they are "stumped" (Those were the words from the most recent neuro). The one reason the doctors say they cannot confirm ALS diagnosis is because when they did EMG, (last one done was in Feb, 2006) it was normal. My father has continued to decline. His most recent symptom is the loss of the ability to swallow liquids. The doctors are talking to my father about eventually putting in a feeding tube. He is scheduled for another MRI next week and another EMG the following week. I realize that finding an answer is a long process, but I was wondering if anyone else has had a similar experience? It seems that the doctors are basing their opinions solely on the results of the EMG. Is that a common response?

I appreciate any help anyone can give. We continue to live on this roller coaster and would love to get off.

Thanks,
Tamra

 

[Pearl]

Tamra, I hope that they can give you some sort of closure as far as diagnosis for your dad - I would think that the diagnosis would be important for things like disabililty insurance, etc....

Hope, the beginning stages are so very hard. From what I'm hearing, most people seem to grieve the most in the beginning. The shock and saddness can just seem overwhelming. Please hang in there and know that with time it will ease up. The care may get more difficult, but the emotions will level off. Not that it ever becomes easy, but perhaps we learn to accept and do what we can. Your faith will help you. I realize that your pregancy makes this even more difficult. Expect an emotional rollercoaster after the baby is born (that is normal anyway, without your added stress). Let your doctor know if you are having problems (with sleeping, rest, overwhelming sadness, ect....).

There are many resources available for ALS patients - especially through the ALS clinics. I hope that you and your mom will seek these out.