CBD and Neck issues

[Marilyn_cbd12]

Hello. Just joined. Wonderful husband is 12 years into CBD. Can't get his chin off his neck -- severe torticallis-- following a Botox injection that "backfired." So sad. Hard to interact with people who want to offer support because he has to look down at his shoes and can't see their faces. Botox adverse effects not wearing off and this looks permanent. Have not seen this symptom in CBD literature. Anyone else have this issue? Thanks. My best to all of you out there who are struggling with this, and with the care.

[honjen43]

Hi Marilyn and welcome!

My husband had issues with lower back spasms, rigidity and subsequent loss of muscle control in same area.

My thinking is that it will depend on where the brain is compromised that will cause spinal problems, wherever they are.

Sorry your husband had bad results with botox. It may be that length of time unmoved may have had more effect than botox itself. I wonder if gentle massage by a recommended Physio may help him gain a little movement, at least enough to wash under his chin - which must be of concern.

I wonder if a mirror on his knee might help him interact with his friends. If they were to come behind him and lean over his shoulder, they can see each other in the mirror. Hope something along those lines will work.

Otherwise, try googling scoliosis and see if there are any suggestions there as bent necks are relatively common for arthritis and sufferers of bone disorders.

Take care!

Hugs

Jen xxx

[raincitygirl]

Dear Marilyn,

Hello and Welcome to you!

Oh my gosh..you have been living with CBD, you two for 12 years? I have so many reactions! First: how have you managed with support for YOU as a caregiver (especially if you've only found this site - the best in the world - now?) What is getting you through?

May I ask what country you are in? If you prefer to maintain your privacy, we completely understand: we respect that totally here. The country, of course, determines a lot what health care resources you might have access to. Did you receive your diagnosis recently, or a while ago? ie. did you know you were living with CBD? Many patients are mis-diagnosed as Parkinson's or a sort of 'Parkinson's Plus'.

The 12 years is staggering...as you no doubt have seen from the internet (the paltry bit of scientific/medical information there) the prognosis for CBD is about 6-8 years. Of course there are people who extend or retract those timelines on either end, so you may be one of the extended outliers.

My husband had CBD and I believe that was his recent cause of death (approx 5-6 years of symptoms). We are in Canada.

I haven't actually helped with any of your questions - sorry I think Jen's suggestions above are brilliant, and I'll look to others to respond more re medications that might help.

Sympathy and hugs to you: Keep in touch with us XX

Anne G.

[Dadshelper]

Dad was diagnosed with CBD in Jan 2016. He head has been bent down to point his chin is on his chest for least a year now. His neck is so stiff and locked he can't lift his head up, heck I've tried to help move his head and it just doesn't move. Even laying in bed his head remains down, it looks painful to me but he conveys it doesn't hurt.

Ron

[Kevin_1]

Hello Marylin

Welcome to the forum.

It's so hard to comment sensibly so I will just put a few ideas forward in the hope they might give you an untried direction to look at. I'm not sure from your post if the botox has relaxed his neck muscles so that he can't lift his head or whether he still has stiff muscles there. Also whether there is pain.

As others have said physio is often very helpful. My wife was headed in that direction a couple of years ago. Physio has improved her ability to hold her up a lot. A neurophysiologist is worth the extra IMO. Talking of extra you should get free physo at home from the NHS - if you are in the UK.

If it is stiffness and pain you might want to talk to the doctor about Baclofen. There was a thread on this a couple of days ago.

Then there is practical head support. This is very good

symmetric-designs.com/headm...

If you are in the UK ask your local NHS Physio to assess and provide one. The cheaper foam ones are hot and uncomfortable BTW.

Hopefully the Botox will wear off - Is it six months before that happens?

Wishing you both the best

Kevin

[kenh1 in reply to Kevin_1]

Following our previous discussion on Baclofen and stiffness my wife was so stiff the carers struggled to get her nightie on and off so they cut it down the back. That stiffness as eased somewhat now as she has been given a controlled drug. I'll not mention any names till I get home on Friday.

[Kevin_1 in reply to kenh1]

Thanks Kenh1

I look forward to hearing about it.

There's a fair bit of interest here on this topic right now.

Best

Kevin

[cameoboy11]

I have CBD and get neck pain though I can still move it xxc xx

[Kevin_1 in reply to cameoboy11]

Hi Cameoboy11

Sorry to hear about your neck pain.

Does anything help with that?

Best to you

Kevin

[cameoboy11 in reply to Kevin_1]

Hi Kevin i take paracetomol and codeine for neck pain amd also exercises Jo x

[Kevin_1 in reply to cameoboy11]

Hi Jo

Thanks for coming back.

I do hope things are doable for you and you are comfortable and safe.

Warmly

Kevin

x

[Ettavb]

Sorry to hear your husband had a complication to Botox - relief from this condition seems so elusive. My mother is nearly 14 years now with CBD (though not accurately dx’d until much later.)

[LostinHeadSpace]

Hi Marilyn,

Twelve years, whew. We're new this year, my husband has/may have CBD. We're looking into the Thiamine treatment that people are talking about on the Parkinson's board on HU, from Dr. Constantini in Italy--I mention it because some people specifically mentioned it helped almost immediately with neck pain. We haven't tried it yet as my husband's neuro refused to prescribe the injections, and we're still trying to see if his primary doctor will agree to try it. Otherwise we'll try the tablets. It's a long shot for your husband's situation, but thought I'd mention it.

Lost

[Allan924]

Have you thought of cannibus oil..I would definately give it a go. Love to you and your family x

[ninalulu in reply to Allan924]

i m thinking in cannabis oil to. God forgive me but I try anything , I have my back damage in 2007 no hope , But I don't take nothing for the pain ,I learn to live like that , i have cauda equina. and is a lot of problems know i have PSP and nothing I can do , but I am going to try the canabis Be strong , the neuro i have is very bad , he only saw 1 an that is no communication what so ever .

[rriddle]

Sorry to hear this. I heard it said once from the UK physician that a physician can go into a waiting room and diagnosis Parkinson's vs. PSP. All the PD folks have their heads on their chests and flexed forward (anterocollis) and the PSP folks have their heads extended back (retrocollis). Those with MSA also have anterocollis. So you might get some ideas from those with PD or MSA. In our local MSA support group, many have tried the neck collar and that seems to help some. Drooling can become more of an issue since the mouth is pointed downwards. You can certainly try muscle relaxants (baclofen, dantrolene, Sinemet). What did the provider of the botox suggest?