Losing My voice

[Bailey_Texas]

Went to bed and woke with Dystonia. My entire body would spasm. It would start and stop over a 20 minute period. My legs and arms as well as my torso where completely stiff. Now i am okay except I can not speak or make any sounds. Anyone had this happen. Been 2 hours and still no voice. Will follow up later.

[michaela13]

Just this week I also lost my voice at night. Could speak a little in the morning.Scared the hell out of me because my regular voice is no more. I have reverted to a baby voice. Slurred speech etc. Already went for speech and swallow therapy. Allergies cause of no voice?

[HeartSong]

Bailey_Texas, goodness, I'm so sorry this happened to you. It must be very frightening, to say the least. I haven't had any experience like this, however, I do something every morning that, among its many other positive effects, causes my voice to be noticeably stronger and more relaxed. (I've written about it several times before in this forum.) Basically, as I'm waiting for my first dose of C/L to take effect every morning, I sit in a chair and GENTLY massage my face, jaw, scalp, and neck. The first words that I speak after doing this are so strong, clear, and relaxed. A physical therapist once told me that a constantly tense muscle is a weak muscle. Through all those spasms that you just experienced, some of your muscles may still be very tense and in a weakened state, possibly including those that affect your voice mechanism.

I hope you've found sweet relaxation and are sleeping soundly right now. But, if not, maybe try to gently massage the areas I mentioned. (There is an artery in the side of your neck, the carotid artery, that you should not massage. It's where you can place your fingertips on the side of your neck to find your pulse. So if you're massaging the side of your neck and you feel a pulse, just move over a few inches where there is no pulse.)

[Bailey_Texas]

Just woke up voice back to normal.

Thanks for the concern.

[enjoysalud in reply to Bailey_Texas]

Bailey, I'm so happy your voice is back. You are a hero to me. I like that you write/share the positive things (meds and exercise and etc) with us, but also the negative. The negative, and sharing the aftermath recovery, keeps hope alive. I am the caretaker for my 54 year old son. If opportunity allows, it would be interesting to hear how your wife (caretaker) handles these unexpected scary scenarios. Does she keep it to herself or after 10 years of living along side you waits with much more patience than I seem to exhibit? My son was DX August, 2015.

[Bailey_Texas in reply to enjoysalud]

For the first few years she would freak out but not so much now. She has seen me walking around talking to myself for hours or just staring out the window pointing a nothing and countless other things. So now she will just watch and ask me what i need. Mostly there is very little she can do. She is very calm.

Judging from your son's age you are older than my wife she is only 61. You are at a point in your life where he should be helping you. I know it can be hard to do but try to spend some time on yourself and take care of you first because you are just important. By doing so you are more able to take care of him.

I feel that your situation is far different from hers. The way a mother feels for a child is much more profound than a wife to her husband or a husband to his wife.

You gave birth to him he is your blood.

My advice to you is to look at your son as your son not as a PWP.

How is your son doing it has been less than a year sence his DX.

At that time i had very few problems.

[enjoysalud in reply to Bailey_Texas]

Hi Bailey, THANK YOU for your response. I am 75 and am blessed with EXCELLENT health. My son's health was also blessed with excellent health until PD. He is not married, lives alone, and presently has NOT been in a relationship for some time. He was put on Disability Retirement. He lives about 15 minutes away. I am his caretaker/advocate. I do feel that I would do much better if It were me who had PD rather than one of my children. He has Double Vision. Prism glasses help but often when he is tired he still has double vision. He has dystonia of the neck (very rigid). His neuro has offered Botox shots, but so far my son has refused. He has heavy fatigue, and often slurred speech. He is still struggling with acceptance. VERY recently we started attending discussion support groups. He walks 3 miles 6 mornings a week, half hour on stationary bike 3X a week, and occasionally practices his bass about 20 minutes (his stiff neck interferes). He is on 2.5 C/l-dopa generic 3X daily. He also RELUCTANTLY takes supplements that I have selected. A while back he suffered swallowing difficulties, but now o.k., but fear remains. I give him articles on the importance/research of exercise. Since 1974 I have always walked 4-5 miles 5 days a week and go to the gym 2X a week. So, what I preach I do practice. I keep thinking once he gets more stable, and hopefully agree to Botox shots,he will do better. He refuses to consider anti-depressants. I have started him on L-theanine and I have noticed improvement. His nature (in the past) was always a "fighter". I hope he gets back there. I am encouraged when I read of other who sat around for a number of years before deciding to fight back. That is my hope for my son.

Thank you again, and keep sharing.

[Bailey_Texas in reply to enjoysalud]

It took me 9 years to start fighting, He will (with time and with you as his guide) start fighting. I believe we must grieve the lost of our life because with PD your life will never be the same.

Denial, anger,why me, acceptance all have to be completed. They take time.

Then you have to get up off your ass and take control.

[enjoysalud in reply to Bailey_Texas]

Thank you..............I'm sure it will happen. I'm just impatient and it helps me to hear it took you 9 years. I've read of many others who it took more than 2+ years. Best to you!

[Beckey in reply to Bailey_Texas]

What a relief!!

I still speak normally but in the span of a couple days I lost my singing voice, which has been a real bummer as singing brought me a lot of enjoyment.

[cabbagecottage]

Bit like you freeze ,. My husband is same What meds you taking . He takes sinemet

[Bailey_Texas in reply to cabbagecottage]

sinemet generic and requip

[DianeF]

Sorry about this Bailey. I just completed a course of LSVT BIG for 4 weeks(3hours a day,4 days a week). One hour of speech, one hour of physical / occupational therapy and one hour of rec therapy. I am in the early stages of PD and thought I was physically fit(gym almost daily, boxing and T'ai Chi). They worked me so hard physically I didn't know what hit me but gave me many tools to continue with and incorporate into my daily exercises. The speech therapy was outstanding and I learned so much about maintaining my speech. This is an intensive program and not for everyone but definitely something to add to our Arsenal. Best of luck to you, you are such an inspiration!

[Donzim]

please consider using electrolytes to eliminate that possibility. also magnesium. when you are up and about again, watch a film on EMST on YouTube. every PD patient should have one....early. we did Big and Loud as well and that's how i heard about it.

[Bailey_Texas in reply to Donzim]

i was great by the morning and have had a good day. Went to my son's and installed a new tow bar on his 4x4 chevy truck. Went to crossfit.

Thanks for your advice and concern

Bailey

[laglag]

Glad you are feeling better Bailey. I'm sure that must have been pretty frightening.

Hope you sleep good tonight!

laglag

[Bailey_Texas in reply to laglag]

Thanks

[DEAT]

Glad it was a temporary thing Bailey. I too enjoy reading your posts. You encourage me very much. All the best.

[Bailey_Texas in reply to DEAT]

All my best

Thank you

[hopedope]

I am glad you are okay again too. Since joining this forum and reading about everyone's experiences I have been afraid that I would suddenly have an episode like the one you had. I think someone referred to them as the dark days. Thank you for sharing so much of your life with PD.

[Littlerody]

There's a dystonia website. I actually just spoke with someone today who emailed me a list of Drs who specialize in dystonia. The dystonia medical research foundation. They can give you referrals in your area. Good luck.