Scared and Overwhelmed

[Dennis & Rhonda]

Hi. My wife, Rhonda was diagnosed with ALS on December 2, 2008. So far, this has been very frightening for Rhonda and the rest of the family as well. In mid October, Rhonda could do pretty much anything she wanted with no hint of any serious problems. We went fishing, metal detecting, and a vacation to the beach where we walked 3 miles along the beach, two days in a row. She had some cramping in her left hand and was dropping weight, but that was attributed to surgery she had in August. On November 8, I left for a business trip and when I returned 4 days later, she couldn't move her left arm. No pain, no numbness, just wouldn't move for her. She could still curl her fingers, but had no strength in her left hand. A visit to our family doctor brought about an "emergency" type flurry of activity. MRI's, a ton of blood work that day, was followed by an appointment with a neurosurgeon the following day. After looking at her MRI's and blood test results, along with an examination, the neurosurgeon told us he suspected ALS and sent us to a neurologist The neurologist completed his testing and told us the symptoms were classic ALS but he couldn't believe the rapid progression. He sent us to an ALS specialist and following extensive testing, he said he was sure it was ALS. Since December 2, Rhonda has gone downhill fast. Her legs are extremely weak and the left especially just won't work properly for her. She cannot walk unassisted and can't get out of a chair without help. A wheelchair is now required for even the shortest walk. I just can't believe what has happened in such a short time.

I'm sorry for making this so long. I promise to try to keep any further posts short, but I just didn't know how to explain the situation any other way.

I know we will be counting on all of you for support and wisdom as we deal with this terrible disease. I hope we can share information with you all as well. Rhonda and I are a team, and we are going to enjoy every minute we have together.

God bless you all,

Dennis

 

[olly]

hi dennis.
sorry to hear about your wife rhonda .
we all progress at different rates but most do platau for periods of time,i hope this will be the case for your wife.
i am sure you will both find plenty of help and support here.
godbless you both

 

[Icanmanz]

Hi Dennis! Welcome to the forum........wish you and Rhonda didn't have to be here. This is a good forum Dennis. We are a helpful bunch, and don't worry about how long your first post turned out. You had to begin with something, that is the only way how we are going to find out something about Rhonda. I will certainly keep her in my prayers. Sorry for the diagnosed, and yes it is fast! Keep us posted, let us know how she is doing. Live every day to he fullest, and prayers are very helpful, too. How old is Rhonda, if you don't mind? Any children?

I am a former Cals (caregiver of a person, or patient with als). I lost my 37 yr old son to als on June 3, 2007, so I can understand what you and Rhonda are going through. If you have any questions, please feel free to ask. I may not come up with a real good answer or idea, but I certainly can give it a shot. May God bless you folks.

Irma

 

[crystalkk]

Hi Dennis,

Sorry about the Rhonda diagnosed. That does seem like very rapid progression. You can always get 2nd opinion at another
ALS specialist. You will be in my prayers. please keep us posted.

P.S. - your post was not too long at all. Please know we are here for you.

 

[brendapals]

hey Dennis,
Welcome to our huge family of friendship and support, I'm sorry you had to find us, but I feel sure you will gain knowledge here.
My heart goes out to you and Rhonda, yes, that does sound very quick in her progression, praying things will slow down very soon.
Have you registered with the ALS Association and MDA? They will be very helpful for you both.
Please feel free to ask away on here, and keep us posted,
Keeping you and Rhonda in my prayers,
-brenda
diagnosed with ALS 6/3/08

 

[brooksea]

Hi Dennis!

I'm very sorry to hear about your wife and her fast progression!

Have y'all been seen at the Medical College of Georgia ALS Clinic?

You may want to have the ALSA come to your house to help evaluate the immediate and future needs of your wife. Tina Haney (RN) covers the whole state and is very helpful. She even brings her little Maltese with her to visit pALS. Tina is very knowledgeable and I'm glad they put her back covering the whole state, even though I know she is stretched.

Tina Haney, R.N./Patient Services Provider/Georgia Chapter ALSA 404-543-6367 cell
[email protected]

I know there is a lot of info to absorb, but I want to tell you that it is very important for Rhonda to gain weight and keep it on. pALS have hypermetabolisms (don't know if they all do) and even when their bodies are at rest, it's as if they are running a marathon. That is how it has been explained to us by the ALS Clinic. We have been advised that my husband needs to consume as many calories as possible to add fat to his body. We now use Carnation Instant Breakfast with ice cream and heavy cream for a daily shake.

I hope you will find comfort here and hope that we can help each other during this journey...

I could go on, but you may have other questions that need answering.

 

[beverly rees]

Hi Dennis,

I am a new member to this website. My husband was recently diagnosed with ALS in October. We will keep you in our prayers that Rhonda's smptoms will stabilize. Bev

 

[BethU]

Hi, Bev ... I'm so sorry about your husband's diagnosed. I'm glad you found forum. There are great-hearted caregivers and PALS here who will help you every step of the way.

Blessings.

 

[brooksea]

Beverly,

Sorry to hear about your husband, also. The list just keeps getting longer...:-(

 

[Icanmanz]

Hi bev! Welcome to the forum. Sorry to hear about your husband's diagnosed. You and your husband are in our prayers. God bless!

Irma

 

[BillDee]

I am so sorry to hear about your wife. My husband is in the exact same boat. He was walking fine in Oct and by late Nov we heard the words ALS. We have had three diagnosis to confirm and the last one, done by a doctor in an ALS clinic was given to us Dec. 19th. Today he cannot walk without the use of aid. For any long distances he has to pushed in a wheel chair. He tires very easily. I think this is just a terrible disease and hopefully we can help each other with our struggles. Write to me any time.

 

[brooksea]

welcome BillDee! Hope we can all help each other out!

 

[Dennis & Rhonda]

Thank you all for the fine welcome! We appreciate the kind words and prayers. It looks like we are not the only new members and that's not a good thing. It is good that a forum like this exists to allow us to share information and express our concerns. It's very good to meet you all!

I will try to answer a few of the questions that were posted. Rhonda is 55. We have been married for almost 35 wonderful years and have two sons. The youngest is 28.

Yes, we have been to the MCG ALS clinic. Last Thursday was our first actual clinic visit, but it was the doctors there who gave her the final diagnosis on Dec 2. We got a lot of information at the clinic and are getting a lot of help from the folks there.

We have been contacted by the ALS of Georgia, but didn't know we should contact MDA. We will look into it.

Thanks again to everyone! I'm sure I will be asking more questions soon.

Dennis

 

[Icanmanz]

Thanks for replying and answering our questions, Dennis. May God bless you, your wife and sons.

Irma

 

[keane]

Dennis,
I'm sorry for your wife's struggles. I have a degenerative joint condition, but have recently begun to have very similar problems. It freightens me how fast the weakness has been progressing. I've now lost most of the use of my left arm, and having trouble raising my left foot. Although my doctors initially didn't agree with me and my request to see my Neurosurgeon, I went anyway because I was sure it was a compressed nerve problem. He performed an MRI and other tests. Now my internist is trying to get me in to an area neuromuscular clinic at his recommendation. The internest was very frustrated because the clinic is almost overwhelmed by referrals from people diagnosing themselves based on internet seaches, but they did say they would take me anyway this week.
I initially found this site to find out what types of tests to expect, but now I'll take the internist's advice and be patient.
Really hoping your wife's progression slows ASAP.