Currently undergoing testing to R/O ALS

[indigosd]

I am so glad that I have found this supportive and informative site/forum. :-o Gigantic THANK YOU to all of you! My husband who just turned 56 is being tested for ALS. I noticed about 6 months ago that he was constantly clearing his throat, slight issues with drooling and that his voice sounded "gurgly". He also complained of a "stuffed nose", thick salvia and headaches in the morning when he woke up. He refused to go to the Dr. We have been under tremendous stress for the last couple of years. We had invested all of our savings into a business and due to the economy we had to close it-sell the property back to the Bank at a incredible financial loss. Then his job has laid him off more than he has worked-huge stress. Due to the Recession, we lost almost all of our money in our retirement accounts [had most of it in high risk due to our age and we have a minor child]
SO....I was hoping that maybe it was a stress reaction-then his speech became slurred and he began choking when trying to eat or swallow liquids and still refused to go to the Dr. because we couldn't afford the deductible for the medical insurance. I finally got him to agree to see a local MD on 1 June and we gave the Dr. a history of the symptoms. The Dr. did NOT do any examination but did do labs for Thyroid function, CBC and lytes and also a B12 level [all were within normal limits] He did give us a referral for a MRI with and without contrast of the head and cervical area which we had done on 8 June 09. I called the local Dr. on 12 June 09 because we had not been notified of the results. He told me that the MRI was negative but he wanted further testing to R/O ALS. My husband had a 3 1/2 hour EMG done on 18 June 09-the muscle part was done by a ALS Neurologist. We go back on 13 July 09 for the PE by the Neurologist and the diagnosis. We feel so overwhelmed. We live in a very small town and have to drive 3 hours to see the ALS Neurologist. I am researching everything that I can find online so that I can be an informed advocate for my sweet husband. From what I have read it would seem that he has the Bulbar symtoms of ALS. Is that truly a worse ALS diagnosed? [if there is such a thing!] Does he have a shorter life expectancy than someone who is diagnosed with symtoms that begin in the lower extremities? We have no life insurance. We have accidental death insurance on the house which is tied to the mortgage. We have a 12 year old son and it looks like we will be in really dire financial straits-losing the only home he has ever known and losing his Daddy. I am so grief stricken. I don't know if it is better to know or Thank God for these weeks until 13 July of not knowing...My first thought when we were told that it could be ALS was that we need to try and sell our home, buy the boat and camper that he wanted to buy when he retired and take off and spend time doing what he loves-FISHING for as long as he was able to physically do it. I could make arrangements to home school our son with the use of a laptop and just make the best memories that we can in the time that we have. The problem is that there is no market for selling our home. Any advice would be so appreciated. My husband wants to keep working so that he will have more built up in his retirement account, Social Security etc. Is it possible to get term life insurance so that at least we would have enough to cover funeral costs and maybe cover a little bit of the insurance and mortgage? I apologize for the length of my rambling. Honestly, I feel so devastated at the moment. I can not imagine my best friend, the heart of my heart being faced with this challenge. He asked me if we just give up because it is a terminal disease...My reply is NO! We are going to LIVE, love, investigate, control what we can, pray for a cure and leave no stone unturned. If he can no longer speak, I will be his voice. Thank you in advance for any advice.
Sincerely,
indigosd

 

[Blackpool]

Hold on

I am sure you will get lots of replys from the good and informed people on this site,in the mean time know that you are in my prayers.

 

[indigosd]

Thank you for putting us in your prayers!

 

[tmasters]

Hi indigosd,

I am sorry that you and your husband are going through this. I will hope and pray that it is something other than ALS.

Statistically, bulbar DOES has a shorter life expectancy than limb onset but every individual is different. You must keep the faith. Also, many PALS choose to vent, and the "life expectency" is measured to where vent is needed, not death.

You are wise to make preparations and go on fishing trips or whatever. But don't give up hope.

I'm pretty sure he won't qualify for life insurance at this point, most companies require a physical. However, when we were shopping for Long Term Care insurance for my wife, I was shocked to discover that I might have qualified for it had I applied a couple months sooner. They don't require a physical, and they only ask questions like "has he been hospitalized in the last X years", "has he been in a wheelchair", "what medications is he taking", etc. NONE of these questions target ALS symptoms as the disease is just too rare for them to screen. So until I began taking Rilutek and using a cane they wouldn't have disqualified me.

Good luck with your diagnosis. I know it seems like it's taking forever but that's the way the system works. BTW: I would count for certain that you will get an absoute diagnosis on the 13th. You may, but don't be disappointed if you get a "wait and see". Just prepare yourself.

-Tom

 

[mare]

HI, indigosd-

So very sorry you had to come looking here; but hope you find the info. & help you are searching for.

My husband was diagnosed last year, and it is very overwhelming & scary. I can't begin to imagine the added stress you have with your financial difficulties.

I would tell you to first, call the neuro (ALS specialist) office and ask if something earlier has come up. If not, ask if they could put you on a list for cancellations that might become available sooner then July 13th. I do think that is a long time to wait for the results; waiting is agony!

Next, I would tell you that it is too soon to do anything regarding big decisions, like selling your house, etc. I understand the "knee-jerk reaction"; my husband did the same thing. He had just bought a new car 3weeks before diagnosis. When he found out, he was going to call & see if they would take it back. He also started to make changes to his will. I told him no, it was too soon. I'm glad, and he is too, that he just waited & let some time pass. He kept the car- he's glad he did- and is still thinking about the will revisions.

First, you don't have a diagnosis yet! If & when you do, you need time to process what it means. Time to learn & gather information- this will be an ongoing process. We continue to do this, even now. No one can say which onset is "worse", or what any life expectancy is. Everyone is different; so I would suggest to TRY and let that go- do not dwell on that. Someone here very eloquently said, "if you dwell on what will happen in the future, you miss the joys of today."

So for now, I would say, carry on life as it is now-continue work, etc.- as best you can. Keep yourself busy, even if it is with little things, to fill the days until your appointment.
Know that there are many caring people here who will answer any of your questions you may have.

Continue with your positive attitude-
mare

 

[brooksea]

Yes, as mare said, you must remain positive. I know that will be very difficult, but try to find to a way.

I hope the results show something other than ALS.

My husband is bulbar/limb onset. Symptoms from 2005. He's still walking and talking (hard to understand) and eating. Everyone is different.

Good luck!

 

[joelc]

Sorry about what is happening in your life right now! It can be very upsetting for sure! First thing is to wait for a diagnosis before panicking. As far as life insurance, it is really too late right now as if death happens they will research and find out there were some issues before the policy was activated and you will be disqualified. So, all your payments will be for nothing. They always ask if there are current medical issues so you would have to lie to be approved.

So, wait until you get a diagnosis and then make your plans. There are many pros and cons to every decision so don't be too impulsive. Come back and ask those questions after you know for sure he has ALS or not.

In the meantime try to relax as much as you can and don't panic. He can live a very good and long life even if he does have ALS.

 

[BethU]

indigosd, I'm so very sorry for what your family is going through right now. It is unbelievably frightening, I know, when this comes at you out of the blue.

Remember what Tom said: the "life expectancy" figures are not till death, they are till someone gets a trache and goes on ventilator support. I don't believe there are even any figures on how long someone can live with a trache, but with good home care, it can be many, many years. And even without a trache, patients with bulbar onset can live way beyond the statistics. On this forum we have a woman who is in her 10th year living a full life after bulbar onset.

There are financial resources available, too. MDA (Muscular Dystrophy Assoc. ... the Jerry Lewis foundation) provides care and support for ALS patients. They are paying for all my treatment at an ALS clinic, and have provided me with (very expensive) needed equipment. They are a fabulous resource. ALSA (ALS assoc.) is another resource that provides loaner equipment, support and counsel for ALS patients. I would contact them if you learn your husband does indeed have ALS ... or even before. The more help you get to help you walk through this, the better.

I believe that SS has fast-tracked anything to do with ALS patients, so you may get valuable advice from them on how to maximize your benefits without the delays you sometimes get with government agencies.

I pray that your husband will not get this diagnosis ... but if he does, you are absolutly right: You can LIVE, love, investigate, control what you can, pray for a cure, and leave no stone unturned! It is amazing what a good life you can have with ALS.

God bless.

 

[indigosd]

Dear Blackpool, tmasters, mare, jimercat, jolec and BethU,
Thank you so very much for all of your kind words and words of advice. It feels like someone threw me a lifeline! I did try to reschedule but no openings and being on a cancellation list will not work due to the distance we have to travel and the need for someone to be with our son. 13 July will be here before we know it and I guess that is just the way it is suppose to be. I am just going to believe that it is all unfolding as it should. :] It is soooo encouraging to hear first hand that you and/or your loved ones have lived many years with this diagnosed! It gives me hope. Researching the statistics is very scary so it is good to have this positive information and the resources that BethU listed. Can anyone share with me what we can expect from the ALS Neurologist with this next appointment? She said that she would be doing a physical exam..I guess what I am asking is what should I look for-ie should she be checking reflexes, what is specific for a ALS workup? Should we anticipate additional testing or lab work before she gives us a diagnosed? IF it is ALS, should we expect that they will help us to procur the services that we need or do we do that on our own? She is attached to a ALS Clinic. Again, thank you for the prayers, the advice, the support and the hope.
indigosd

 

[Zaphoon]

If I may share my views on the subject... give the diagnostic process time before giving any more thought to ALS.

Try having the attitude that it must be something else. Give yourself all of the time it takes for all of the testing, re-testing and rule-outs.

Try and avoid anything that threatens to bring on more stress, if possible.

We're pulling for you!

Zaphoon

 

[indigosd]

Zaphoon,
I Love your "Sooner or later they'll find my pinched nerve."! I completely agree with trying to decrease the stress and holding on to hope for a different diagnosis. It is pretty difficult to do when you are immediately sent to a ALS Neurologist vs Neurologist and she spends twice the scheduled time doing a full body EMG. How often is that done? She even did a Nerve Conduction test by putting the needle under his chin and up through to test his tongue! OMG please tell me that he will not need to go through that again...
We are soooo appreciative of our moments now and we do not take our life for granted. That is a blessing. He is fishing as much as possible [left at 5am] and that makes him HAPPY. I am going to go and wash windows today and work in the garden to fill my moments until he is back home. :]

 

[pudge44]

can you please tell me what the outcome of this horrible situation was? I am in the same boat with a husband who has been diagnosed with probable als and his symtoms are bulbar please help:sad: I am so sorry you have had to go through all this bless you

 

[BarryG]

Pudge44, I'm sorry to say that the outcome was that Kay Marie's (indigosd) husband Wayne (Web) died last week of bulbar ALS. Two others on this thread have also since passed, Blackpool (Beverly) and BethU.
Sorry but that is the nature of this awful disease.

 

[sadiemae]

So strange to read one of her first posts. Love you Kay!

 

[pudge44]

God bless their loved ones and god bless you all thank you for your information Hugs from Kim