Is it als or brain mets?

[Wooly]

How do I know if my husband's symptoms are due to als(mnd)?
He has ftd(c9orf72) but was doing ok until November.
Since then he has been diagnosed with metastatic melanoma. He has 13 brain Mets at last count.
He suddenly over the past few weeks lost use of his right leg and now hands and left leg. He has trouble speaking and no voice is wreak.He has had immunotherapy but they stopped it because they say it's not working.
How do I know if it's melanoma or als?
They don't seem interested in finding out as he is terminally ill but I need to know.
Could immunotherapy cause sudden onset of als?

 

[lgelb]

Hi, Wooly, I'm very sorry about your husband. It seems more likely that brain mets are the primary factor here than immunotherapy or FTD progressing with ALS. But each could be contributing. I don't think there's any way to really parse that.

As Nikki mentioned in your last thread, C9 manifests in different ways in different people, so whether or not your husband's C9 is expressing as ALS does not imply anything one way or the other in terms of other family members. Risk is about whether they have the gene or not.

Please feel free to ask any questions or air any concerns about keeping your husband comfortable at this time.

Best,
Laurie

 

[Nikki J]

I am truly sorry. Agree with Laurie.

 

[Wooly]

Thankyou.

I am dealing with him on my own due to covid.
How do you manage lifting and bathing,toilet etc?
If it's the brain Mets or als/mnd he is still heavy and I could use some advice of anyone has any tips.
He has lost the use of his hands this week.
I'm in uk.

 

[Dee Dee 0617]

Hi Wooly, I'm currently paralyzed from the shoulders down. My caregivers use a hoyer lift to move me. See if you have a local medical supply closet to borrow from. I was able to borrow one from the Episcopal church. They are safe and easy to operate. Toileting, I've resigned myself to using a bed pan, it is much easier on my caregivers and my body. Spongebaths work wonders until you have help navigating the shower. I have an inflatable bathtub that is placed on my bed, I get hoisted up with the hoyer and lowered in. This does require two people. God bless you for your service and dedication. Hugs to your hubby, please let him know he is not alone.

 

[Wooly]

Dee Dee,
Thank you so much for taking the time to reply.
I have never heard of a hoyer but I have never really needed to before.
I will look into it.
It was so lovely of you to help and it was kind of you to send good wishes.
I am doing bed baths now and it's a good job my husband can still see the funny side of things as I soak the bed and myself regularly.
I have asked for a hospital bed but hubby doesn't want it.
My poor back is aching but I want him to be happy and a bad back is nothing compared to what you and he are dealing with.
Do you think it will be ok to carry on using our double bed?
What type of bed pan do you think is best for a man?
Getting into the commode is very difficult and messy.
How do you move up and down the bed?
My poor hubby gets unceremoniously rolled and dragged. He is not a small man.
I wish you all the very best and send you my love.
Keep safe and well.
Xx

 

[Nikki J]

Hoyer = patient lift and will certainly help and be safer. A hospital bed is much easier for you both because you can adjust height and raise/ lower head and legs which will make him more comfortable and because it is easier to reach on both sides.

a normal bedpan if he can tolerate it There is a so called fracture pan that is smaller but more prone to “ accidents. “
Are you helping him use a urinal? There are also condom catheters ( men have a major advantage in this area)

there are online videos of how to give a bedbath. As long as he is cooperative you can manage and not get drenched yourself. It is so unfortunate that the coronavirus is keeping you from getting services. Again I am sorry

 

[lgelb]

The problem with carrying on with a regular bed is that the Hoyer likely cannot be used with it (there needs to be unobstructed space underneath for the legs of the lift). It is also hard to get leverage for movement when you have to reach across half a bed. If you get a hospital bed, you can put a slip sheet underneath the top sheet for movement as well as having the Hoyer.

For toileting, many PALS use a "shower commode chair" if they still have enough core strength for it to be comfortable, or hover in a sling (the sling that is attached to the Hoyer lift) above a portable commode or bucket. If you Google "divided leg sling" or "U-shaped sling," you can see pictures of how it works.

 

[swalker]

I am so sorry that you are facing the challenges you are. While your husband may not have ALS, you are facing challenges that many here have faced.

I use a hospital bed. I procrastinated about getting one. I still would not have one, except a friend (whose husband died of ALS) offered to donate the one he had used. It had been sitting in her house for 6 years waiting for the ALS association to find someone who needed it.

I was silly to procrastinate so long! If your husband is open to a bit of encouragement from a complete stranger, show this post to him. The hospital bed made my life better, but more importantly is a great benefit to my wife.

Also, don't underestimate the potential for developing a back injury or the consequences of such an injury. What happens if you are not able to lift anything? Even the bedpan? If you continue to lift him yourself, you will injure your back. It is not a matter of if, only a matter of when and how bad.

I encourage you to act now to do whatever it takes to get a patient lift, such as a hoyer. It will save your back and will be better for him.

Finally, it sounds like he is confined to bed due to lack of mobility. If that is the only reason, I encourage you to look into getting a power wheelchair. It is not just to get him moving about. It is amazing how much difference it makes to simply get out of bed and be in a comfortable, supportive chair that does not cause bedsores.

Best of luck as you make your way down this difficult path. Know that you are not alone!

Steve

 

[Wooly]

Thank you everyone.
The advice is great and I hope you don't mind me asking when we may never know if it's the tumours,the bvftd or als .
He can't sit properly. He has no balance He has tumours in his cerebellum.
He doesn't speak except the odd word. His mobility is very poor. I have to hold him up. He can't understand instruction so he even struggled to sit on the commode.
I know you will understand the difficulty he has.
I have ordered the bed and am waiting for a call about a hoyer type lift.

 

[Wooly]

Apparently I can't have a hoyer because I won't let the staff assess my husband without PPE. The Occual therapist don't use any.
I'm not letting anyone in without.
I for want covid on top of everything else.

 

[Nikki J]

I am glad you are getting a bed. I am sorry you can’t get a lift. Here sometimes you can get a used one for the ALS loaner cooset maintained by the equivalent of the MNDA. Maybe ask? Or is there some local charity that might have mobility aids? Can you ask to do a zoom assessment? Here the doctors are being exempted from in person meetings usually required to get wheelchairs and such and PTs are doing online assessments

re how you will know. Honestly you may not unless he is examined post mortem. If you are interested you might contact the GenFi professor and see if they might have a donation process. one of my relatives in the Uak donated themselves for research ( this was before GenFi). The family did not get any report but we knew she had ALS. I have heard of people being told things from a donation examination

 

[Wooly]

Thanks Nikki.
I.am looking into.borrowing a lift. Th advice I was given was to nurse him in bed. That seems unfair.
He is happily sitting in the wheelchair watching tv with me . If he doesn't have much time he deserves to enjoy it.
Henri might help. I will email them.

Thanks again.

 

[Wooly]

Hi everyone,

Just to update and say a big thank you for all your kindness and support.

Sadly Nigel died on 6/5/20 at home.
We had put him in our bed and I was holding him. Our kids were there too.We even found a baby duckling under the car and my son put It on his pillow. He would have loved that.(It went back to the pond and found its mum).
It was as lovely as it could be but I am heartbroken.
Our son is joining Genfi to continue the search for a cure.
I will never know how much was Ftd/als and how much was his brain Mets from melanoma but he was keen to help in the search for a cure for als and ftd.

I truly hope it's not too long.
Thank you again.

 

[Nikki J]

I am so very sorry.

i am glad you were with him.
thank you to your son. We are getting close to answers. He is helping as did Nigel with his participation.

I am closing this tread but opening an in memoriam so people can express condolences Wooly’s Nigel

peace and comfort