My husband has had a Parkinson’s diagnosis for 8 years and it has been quite a journey. It is getting more bumpy now! In brief he had a tremor which got so huge and unmanageable that we discussed suicide. We have been very proactive in seeking medical help and his life was saved by a deep brain stimulation operation in Bristol. He has remained very active and we walk a lot but recently I have noticed a change in his gait which is worrying me. He is a brave and wonderful man and I often worry and cry about our future. Our BIG problem now is that he can hardly speak (and I am deaf and use hearing aids). He is 70 this year and I am 67. Our communication is almost impossible as his voice is very weak with a pronounced stutter and indistinct diction. Speech therapy has not worked. Twice recently he has choked on food and I have had to do the Heimlich manoeuvre. Our marriage is under threat and I am often telling him not to speak to me as communication is too hard for us both! Our 3 grown up children have all got problems of their own which we are helping with and we don’t let them know how our lives are going. I will stop now as I am making myself cry. My husband is more stoic and positive but we cannot discuss anything now. Any ideas?
Welcome back tot the forum.
It sounds like you and your husband have been going through a tough time and sad to read that you were feeling emotional whilst writing your comment.
Please be rest assured that you’ve come to the right place for support and we will help you and you husband on this with Parkinson’s as best as we can. It’s not uncommon for carers of people with any long-term condition to feel the way you are feeling, but it’s important to know that there is help available to you from healthcare professionals, your local social services and our support services - there’s more information on this here: https://www.parkinsons.org.uk/information-and-support/support-you
We have a lovely and supportive community on the forum and I’m sure you’ll hear from our members soon with their own personal tips and advice. However, if you’d like to speak to someone in more detail about what you’re going through, our helpline service is always available to you and your husband. Please feel free to give us a call on 0808 800 0303.
very hard, doesn’t get much harder than what you two are going through. I am about 5 years since diagnosis at 62, and have not had to consider the DBS route yet. Can I assume in addition to speech he has tried physical therapy, and practices them daily? Choking is a problem for us, we really need to focus when eating and not talk. As for new ideas, well there is one I believe in, and that I truly believe is helping me. Why don’t you read about the current study on it in the link below, and if it’s something you think he might want to consider, I will answer all the questions I can about it. If not I understand, just know you are not alone.
Hi Mrs HH,
Sorry to hear your situation. Have you looked into a voice amplifier to see if that could help you both?
My dad has PD and his voice is very weak which brought me back onto the forum to see if anyone had had any positive reviews or advice.
I’m will probably buy one to see. I will let you know if it works for us. (Fingers crossed)
Thank you for all your supportive messages! I am interested in Ambroxol especially because it breaks down phlegm which feels to us as if it is a significant contributor to my husbands speech now. I would love to find out more about the voice amplifier and other speech aids too.
If you have any questions for me, just let me know. I am in your husband’s position in my marriage, and although my PD is not nearly as bad (and hopefully it will never be with my continued long term use of Ambroxol), I can absolutely relate to what you are going through, as would my wife. If I can help with perhaps even just a little bit of potential light at the end of the tunnel, just let me know.
The voice amplifier is great (see Parkinson’s Aids). Maybe your local Branch would consider purchasing one that could be rented out to try. The unit can either be put on a table in front of you so that the voice is more easily projected or the equipment can be attached to you so that it is mobile. Please be warned that you may have to adjust your hearing aids!!
Really sorry to hear about your situation… with communication being at the root and heart of a relationship, when it fails it can seem like the whole thing is falling apart through no one’s fault . And all the more painful when there are such difficult things to discuss , and thoughts and feelings you want to share as you always have done. The frustration on both sides takes its toll . Are there times your husband’s speech is better than others? If there are maybe you can capitalise on them , but i know that may not be possible nor easy and doesn’t deal with the issue during the rest of the day
Amplification may help but if you need clarity of speech in order to hear well enough and your OH cannot deliver that and your hearing aids can’t help with that then additional volume will not necessarily be the answer. Speech has the advantage of being quick and immediate, but there are alternative ways of communicating … writing , typing , texting, not to mention the world of augmentative and alternative communication ( ACC) devices, which I know very little about but you can find out about online ( and maybe look up Martin Pistorius and read the story of his early life , Ghost Boy ( also summarised in a 15 min TED talk)).
Best wishes , Pippa
Hello DHP Thanks for the information about Ambroxol. It is very interesting and I have ordered some online. What is the adult dose?.
Also thanks to Pippa for her encouraging response and I will certainly look at the TED talk. I think there are times when my husband finds speech easier but we have to make a quiet space and sit opposite each other so it is like an appointment to talk. My husband finds change hard and does not focus on certain things that help such as remembering to get my attention ie eye contact before a firm start to a sentence. We have a microphone that connects via Bluetooth with my hearing aids but he never uses it. There are cognitive issues that get in the way of communication too. I have to make all the telephone calls and often must speak for him and all this is hard for a man with a great sense of humour which he cannot now express. Still we count our blessings and carry on but the next 10 years fill me with dread quite honestly.
and to say that whilst it is hard not to think ahead ( and sometimes we need to obviously) , I think our minds and imaginations can take us to some dark places which may in fact have little relation to reality as it actually pans out, so there is little point, and more to be gained from focusing on the here and now and what is possible and what can be done. I absolutely know how hard it is to do that and I often fail, but I know that our mental health requires it…
and strangely, my OH speaks more clearly when he is angry or when stimulated by music or sometimes the presence of someone else…I don’t know if any research has been done in this area but it seems that the additional emotional energy that is generated has a beneficial side effect…of course the other consequences of anger rule it out as a recommended intervention strategy!
Hello Mrs HH,
So sorry to hear what you are going through. Its so important to be able to speak to others in the same situation. I can relate to so much, my PD hubby is 72 & I am 68, on this journey for around 9 years. . His speech is bad most of the day, talks quietly & mutters & I constantly say pardon or just say yes/nod which is always the response. Have you registered with your local carers hub. I have found this a life saver especially so since the pandemic. I am also on a private forum on facebook especially for partners of people with Parkinsons. This suggestions might not be for you I understand however. On the speech front are trying to remember to do the exercises as suggested in the recent PDuk magazine.
If you want to ask anything please do. Oh by the way I understand how its with family.
all the best
The trial escalation protocol follows below as well as a link to it (it starts very low to let you adjust and monitor for any rare side effects). I stopped at 300mg (10 tablets) 2x daily at 4 weeks, but you can see the completed trial dose went much higher (420mg x daily). If the current trial is successful which I believe it will be, whether or not the higher dose is recommended in the current study with findings to be published next year we just can’t know. You should of course let your doctor know if he plans to try it (mine is ok with it, but he knows all my current meds and medical history).
Completed Trial Escalation Protocol: The 186-day exposure period comprised 28 days of dose escalation, with each dose administered 3 times per day as follows: 60 mg (days 1-7), 120 mg (days 8-14), 180 mg (days 15-21), and 300 mg (days 22-28). This exposure period was followed by 158 days of administration of ambroxol at 1.26 g per day (420 mg 3 times per day.