New Here - and very lost

shelleynshaggy · 09-02-2009, 09:38 PM

My name is Rachelle. My husband, Jim was diagnosed 7/2/09 w/ frontal lobe dementia and 8/14 with MND. The dr doesn't want to "pigeon hole" him with the diagnosis of ALS yet - he is having "spasms" in his lower extremities and tremors. He has bilateral Babinski sign, hypersensitive reflexes, dysphasia and mumbled speech, also unable to project his voice. Plus he has the cognitive issues.

All of his exams (labs, CT, MRI and EMG) have been negative - however the tremors and spasms are obviously there as well as the choking episodes. Has anyone else had all these negative tests AND be diagnosed with ALS. His medical records state ALS Syndrome, but the neurologist told us frontal-temporal lobe dementia w/MND.

Are there any other tests I should be requesting? He will be reevaluated in Dec. They will probably do a spinal tap and gene-mapping at that time.

I don't know what else to do. I am confident in his doctors (he has a team from the Cleveland Clinic Mellon Center) which is apparently an ALS Center. I was ready for a diagnosis in August - and when we didn't get one I was devestated. In hind-site he probably started with dementia symptoms 2 yrs ago. Noticible dementia symptoms since Oct 2008 and MND symptoms since the beginning of this year. How long do between symptoms and a "true" diagnosis.

How long until I have to worry about him carrying for himself and our daughters (ages 5 and 2). He has been ok'd to continue caring for them for now. I know there are no definate answers - but I would like some guidance and real-life experiance.

Sorry to ramble - but I have been looking everywhere for help.

shelleynshaggy · 09-02-2009, 09:40 PM

One more thing - anyone else diagnosed in their 30s? Jim is 36.

Katie C · 09-03-2009, 12:12 AM

OK first a question... do you prefer Shelley or Rachelle? Cause if we're going to be talking a lot, I need to know! Cause well... I'm just that kind of control freak!!

Don't know if you've read my other post yet... It took me close to 3 years to get an actual diagnosis, but that's mostly because the medical folks we were dealing with weren't "getting it." Your husband's progression sounds very similar to Glen's... started with the "personality changes".. which were bad enough I almost left, did move out of the bedroom, went to counselling myself, he went to counselling, and yet nothing seemed "right." And of course he was downplaying everything to the doctors. I finally literally threw a tantrum after a choking episode, moved out of our bedroom to the downstairs, and said either he went to a doctor and was HONEST about the choking, the coughing after every meal, the lack of hand strength, etc. Primary care doc sent him to an ENT who sent him to a speech pathologist... who looked at his barium swallow results, said he needed to do the test again and she wanted to BE there... and immediately said he needed to see a neurologist! Things moved relatively quickly after that.

Glen is actually still working, and still driving, though I think we're heading towards taking the keys away soon. I've told him our son (24, living at home while finishing school) or I will be happy to drive him to and from work. Hope this doesn't sound offensive to you, but the issues you may run into because of your little ones are going to be similar to the ones we're dealing with over my two golden retrievers. We need to be vigilant about cabinets being closed, he once left the front door open and my 18 month old puppy wandered out.. .came right back but if we hadn't been there... WebMD has a page called Dementia in ALS.. when I first read the frontal lobe dementia symptoms it was like somebody had been following us around with a clipboard!! I've described it as living with a person who is half grumpy 80 year old man and half 5 year old.

Don't know if any of this is helpful for you. It sounds like you have good medical people... is there one nurse or social worker who is a contact? That will help you a lot. Also... go to alsa.org and find your local chapter, they will be a wealth of support and information!

Write or post to me any time... i'm usually not far from my computer. Hang in there.

nishant · 09-03-2009, 07:47 AM

Quote:

Originally Posted by shelleynshaggy

One more thing - anyone else diagnosed in their 30s? Jim is 36.

I was daignosed when I was just about to turn 30.

Marjorie R. Wilcox · 09-03-2009, 04:48 PM

A CPK blood test would be another test to have taken since if the numbers are high it indicates muscle involvement. But I do think that many ALS people have an abnormal EMG.

shelleynshaggy · 09-03-2009, 05:15 PM

Katie - Shelley is good. - That is what my friends call me. I answer to both - you can tell where people know me from by what they call me.

Your story sounds just like Jim. I had actually packed the kids up and left once in the Spring. I could not understand why he didn't seem to care about anything anymore. He personality has really changed - and I couldn't understand why. We have done the counseling thing, etc. The main episode that caused him to seek treatment was he let our then 18mo old daughter run out into the road in front of my neighbors car - and didn't react. Luckily, my neighbor came and talked to me about it. That is what started the treatment for depression and then ADD. I gave him a choice - treatment or leave. Luckily, we have great neighbors and family support. My daughter's school reports to me not only on my daughter's behavior but my husband's as well.

He has been evaluated and ok'd to watch the girls. I insisted on a driving evaluation - which he did pass (he had a pretty significant car accident last summer - so I wanted to be sure). He will be reevaluated every 3-6 months. We have already decided (or been invited) to move in with my parents once the need warrants. I work weekend evenings and weekdays (he has been Mr. Mom since losing his last job 2yrs ago) so I will probably drop my weekday position so I can watch the kids during the week and my parents will watch them during the week. I just can't believe I have had to make all these plans in just a couple months. However, at least now I understand why he does what he does and I we are getting along better

I have contacted the alsa in Cleveland and need to call the representative back. We are doing the Cleveland ALS Walk on 9/20 - we have raised over $1000 in just 10 days. I am overwhelmed by the support from my friends, family and total strangers. Most of the emotional support has been for me. Jim and the kids are very unaware of the situation. He is very detached from the situation - I guess symptoms of the dementia. We have not discussed much with him- he is not asking much. The doctors and counselors have decided that this is best for now.

Katie C · 09-03-2009, 05:24 PM

My son is doing the ALS bike ride on the 19th and I know what you mean about the overwhelming response!! He's closing in on $5000! And some friends Glen used to work with actually signed up to do the ride with him! They are doing the 10 mile ride this year, as we are hoping Glen may be able to do it with them... although his core strength is slipping, so we'll have to see if he can ride that far. Next year Kev & the work friends all plan on training to do the century ride, and my sister, myself and some other friends are going to do the walk the same day.

If you could send me your e-mail address, I have something I'd like to send you that I got from our ALSA care rep today concerning FTD.

shelleynshaggy · 09-03-2009, 05:42 PM

Ok - I cannot figure out how to send my email. Everything I click on I do not have access to! Am I missing something. I was expecting to walk just my family, then my mom joined and so did a bunch of her friends. A lot of people already had plans since it was only 1 month away - but that's ok too.

Katie C · 09-03-2009, 05:51 PM

ok, just e-mail it to me at twoskaters@aol.com

indigosd · 09-06-2009, 11:26 AM

Shelley, so sorry that this has happened to you and yours. Your story is so puzzling to me. Does the Neuorologist understand that your Husband is not fast tracked for SSDI without the diagnosis and that it is a six month waiting period? Hang in there and sending you hugs!

shelleynshaggy · 09-07-2009, 02:26 AM

I sent the SSDI forms in - his record states "ALS Syndrome" - who knows what SSI will make out of that. I just got all the records over to SSI this last week and am awaiting a reply.

indigosd · 09-07-2009, 11:51 AM

Shelley,
SSDI and SSI are two separate programs. You know that -correct? A diagnosis of ALS will fast track SSDI. I don't know about ALS Syndrome. SSI is determined by your lack of income and will give your husband Medicaid if he qualifies and also a monthly check. SSI does little to help you and the children. At least that it is the way it is in my state. SSI wanted both of my useless ovaries and the soul of our last born child and we still did not qualify! IF your husband has ALS, why are the Dr.'s not using that diagnosis? It would really be an additional burden if he were not eligible for SSDI because of the "Syndrome" attached to the ALS diagnosis.

About not being able to send emails on the Forum. I think you have to be on it for awhile or make a certain number of posts before you can access that feature...at least that is how it worked for me. How are all of you today?

shelleynshaggy · 09-07-2009, 11:55 PM

I guess now that you say that - I did realize it, yet I didn't. At 33 I don't know anyone who has had to do this. SS dept acts like you just should know what to do - it is all a great secret. My parents are pretty clueless about it too. My father went through the same process when his 1st wife died - I just found out no one ever told him to apply for his 2 kids - found out way after the fact. Truthfully, my dad's memory is no better then my husband's - my mom and I joke we will put them in "the home" next to each other - they are becoming more alike each day.