Hi all, I look after my father who was diagnosed with PD 2 years ago and up until 4-6 weeks ago he and the rest of my family seemed to coping well. Recently my father, who is in his 70's, has taken a dramatic downward turn and seeing this once capable and confident man reduced to someone at his lowest ebb in his life, is to say the least, hard to cope with.
He has, up until now, been perfectly capable of managing his meds and communicating with his PD nurse and Neurologist by himself but, 4 weeks ago I had to take him to A&E as he was suffering feelings of breathlessness and bloating. They could find nothing wrong with him apart from his blood pressure was low (which historically it always has been). There were no blockages in the bowel but the key issue which is keeping him awake at night is not being able to burp and release what he feels is a excess of gas. This happens mainly in the evening and in the early hours of the morning. His tremors are bad at the same time. This is leading to incredible amounts of anxiety which of course compounds the problem.
After much persistence in contacting the PD nurse she has subsequently recommended an alteration and increase in meds so that he is now on 3 x Sinemet and 2 x Half Sinemet per day however, this to me and him just doesn't do the trick. He is now 'clock-watching' and constantly wondering when the meds should start working and when they are going to stop working (anxiety)!
Getting any kind of support and emergency advice seems to me to be none existent hence me joining the forum.
I guess what I am seeking from this forum is if there are any tips etc; that can -
1. Help with trapped gas
2. How to get emergency assistance (please do not say contact the PD nurse as her voice message states that she probably won't get back to us for 48-72 hours)
3. How to cope with anxiety
4. Is there any private specialist care available
Any help gladly received.
Please phone the PD UK helpline whose number appears top left of this page. They are very helpful and will make every effort to get back to you with a listening ear and experienced advice which plainly you need at the moment. I am the same age as your Dad but it seems to me from what you say that your PD nurse is somewhat dismissive of what for him are worrying symptoms. Burping can be a PD symptom as are swallowing difficulties and slowing of the digestive tract - see the publications link on the PD UK Home page. Any stress worsens PD symptoms anyway so worries should be taken seriously. Anxiety is a feature of PD and as I have suffered from this in the distant past I know it can make it hard to think straight. My anxiety too took the form of a feeling as if there were a "lump in the throat" so I am wondering whether the burp which your dad cannot fetch up might not be something similar.
I haven't used it myself yet but I have often seen other people highly recommending the helpline here. Apparently there is a nurse available there too.
Hello Spezza and welcome.
I am a great advocate of joining your local branch. Besides giving you access to an ISW there was/is a Welfare Officer who can and usually will take up your case or at least bring it to the attention of someone who can help.
Hello Spezza and welcome,
My husband has had this bloating feeling for years, he has had PD for 30years, we get him Ginger or ginger ale as ginger is good for the stomach and the fizz usually help with the burps also peppermint capsules are good from the health shops. It is also important for him not to be constipated as this will only compound the feeling and interfer with the obsorbtion of his medication, There are medications that could help your father so perhaps a visit to the GP would be helpful as you feel you are not getting that from your nurse.
I hope this give you some options.
I just wanted to add some links to support the suggestions other community members have given to you here.
You can find your local branch by postcode or place name here: http://www.parkinsons.org.uk/localgroups
Our information sheet on anxiety is here: http://bit.ly/iNHZ1j
The one on eating, swallowing and saliva control is here:http://bit.ly/uYMBSb
You can get information on any of these topics along with help finding a private specialist on the helpline at 0808 800 0303
I hope this helps.