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61beachbum

New member
Joined
Aug 14, 2018
Messages
2
Reason
Loved one DX
Diagnosis
07/2018
Country
US
State
FL
City
Ormond Beach
Recently diagnosed w/ PLS & approved by VA 100% disabled, my husband is having difficultly accepting both. He knows he has health problems like difficulty speaking & very low on energy but he doesn't think he has PLS. We already received a 2nd opinion from the Mayo Clinic who agreed w/ the 1st doctor. Any suggestions on how to get him out of denial?
 
How does your husband refer to his current issue? What interventions have his doctors recommend so far?

It’s a serious issue if he refuses to follow the management program because he thinks this is something benign that will just go away. If that’s the case, you might want to discuss the situation with the clinic social worker.

On the other hand, if he is willing to follow the doctors’ recommendations in terms of adaptive equipment, keeping up nutrition and calorie intake, etc., then it really doesn’t matter if he and you refer to it as ALS, PLS, or something else.

Hopefully it’s a matter of him needing more time to come around to accept the diagnosis. A lot of people, myself included, use denial as a coping mechanism. It can sometimes be healthy in terms of helping one get through the day without obsessing over the diagnosis and the future. It is often hard for people to believe that they have a serious problem when they can still function in some capacity.

I suspect he does believe the diagnosis on some level but is terrified.

He still needs to come around to some level of acceptance to get financial and legal affairs in order including documentation of his end of life choices. You could discuss this with him and tell him it’s a good idea no matter what is going on.

Hopefully other family members and close friends can help too.
 
I'm so very sorry. I live in Daytona Beach Shores so we're neighbors. If you want a good doctor who will work with him, Alyn Benezette, owner of Coastal Neurology on Granada is wonderful. I've been going to him since an auto accident in 2000. He helped me more than any clinic.

If you need somebody to talk with please message me and I'll give you my phone number.

Honestly, sometimes I think I've been misdiagnosed. I saw the EMGs and I have the classic symptoms but I also have lots of sensory issues, mostly pain. I went to four ALS clinics in 2014 and 2015 looking for different results.

I think you have to talk about the upside of PLS. It might take years to turn into ALS. He is also a veteran and will receive great benefits.

It must be so hard for you. I pretty much kept my denial to myself because I don't have a husband or children. The sad thing is that my sister-in-law still believes "I'll make it" whatever that means. My brother, who is 19 years older, has never spoken the words and he won't talk about it. His two daughters, both in New York, don't mention it.
 
It may just take time. PLS is one of those diagnoses that is via process of elimination and it can be hard for it to feel "real". I still doubt my diagnosis, despite very real disability and fatigue and several doctors telling me they've eliminated everything else- and I've been at this since late 2014.

I am not sure if forcing your spouse to put a name on their condition would be as valuable as trying to work with him to relieve symptoms, even in small ways. Things like getting a decent sleep, reduction in muscular discomfort, eating properly, etc. Supporting general health can go a long way towards improving well being and mood. There can also be a definite rigidity in thinking, cognitive issues and occurrence of low mood in some MNDs and your husband may be experiencing this.

Sorry you find yourself here and are having to watch your husband struggle with this.
 
It's not really an issue, having only been diagnosed last month. Likely he has time to get affairs in order and it does not sound like he's a fall risk.

Give him time.

Ultimately, if needed, you can use "I" statements like "I don't want our not having a Will to hang over us" [get all your own documents done at the same time] or "I would like to see if we could download a speech app so I can understand you better," or "Aunt Susie asked me why she couldn't understand you, so I told her about the diagnosis," etc.

Best,
Laurie
 
Last edited:
Thanks for the doctor recommendation. We do need to find a new neurologist my husband's doctor retired the end of April & didn't inform his patients in advance. This was his doctor for past 3 1/2 years. Yes, you are correct the VA has so many benefits & we have started receiving a few already,
 
FWIW, The local ALS support group meets on the second Wednesday each month from 1-3. Here is the contact person for our group.

Marixa
Regional Program Director
East Central Florida
813-637-9000 x 109
813-515-4539
toll free: 888-257-1717 x109
fax: 813-637-9010
[email protected]
 
Honestly it took me time to accept it also given the number of people diagnosed with it at any given time.
 
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