Hi - I have not posted before. My dad is 74 and has been diagnosed for almost 2 years although we believe he had Parkinsons for a while before that diagnosis. He is getting worse in terms of moving his legs, speech and posture. He seems reluctant to increase his drugs even though he has been told he can. He has been on the same dose since October 2018. He is not doing as much as he used to in terms of exercise and he isn’t going out much. He is also on anti-anxiety medication. He is not doing the things that might help him with his rigidity and speech issues - we keep suggesting walking and other exercises but he doesn’t do them often enough. If he won’t do them, then he may need to have more medication? How can we get him to realise this is a progressive illness and increasing medication is not failure but is going to be what needs to happen as the illness progresses, especially if he won’t or can’t help himself with other activities. We really feel for him as it must be so frustrating and he used to be such an active man but we do not know how to help him be the best version of himself that he can be. It is very difficult for the family to get this message across. Hopefully someone has some top tips?
Hello LK71
I think you may need the PD nurses to phone and have a chat with him
You can call them yourself and explain your concerns beforehand.
My husband finds exercise helps a lot he has a bike on a turbo trainer and does at 40 mins at night and follows that with weight lifting,
The thing you notice is that they don’t seem to feel happy , this is not who they are ! But it’s what people see and comment on .
Exercise helped my husband’s walking ,now he goes out fell walking ( he was a fell runner)
But some days he couldn’t walk a long the street , but can now,
He plays with his medication amounts upping and downing it ,
He does always discuss this with the PD nurse before hand ,it helps them see if he’s on the right dose Of that medication, please contact the professionals , right it down ring them up .
AL
Hello LK71 I do agree with the advice about speaking to a PD nurse and you are right in what you say about exercise etc. If I might make an observation as one who also has Parkinson’s and my comments are purely my thoughts on what you wrote and not intended to criticise when you are only trying to do your best. If you think about the general population I think the majority know about the benefits and importance of good diet and exercise but a great many have good intentions that don’t convert into action for all sorts of reasons. Your dad’s reaction could arguably be seen as fairly normal measured against the general population; but I can hear you say his situation is not 'normal ’ he has Parkinson’s and isn’t doing what we know can help. True of course but with respect you don’t actually have to live with it which is a whole different ball game. It is not only a physically disabling condition but mentally to it is a huge and exhausting challenge of which depression, anxiety, stress and apathy are all high on the top 40 of things that make things extra hard. They are all like silent stalkers creeping up on you and stealing your confidence, your energy, your ability to think straight or make decisions. You say you keep suggesting things entirely understandable but he may be reading it differently he may see it, for example, as being pushed into something that in his head he can no longer do and your keep saying it may just reinforce what he can’t do. When you suggest going out where are you thinking of going, social interaction can be very difficult. Also I don’t think you should underestimate the impact of the lockdown - it is known that the numbers reporting symptoms of depression etc has risen in recent months. I think you need to box clever, keep it low key, I call it drip feeding you have to be patient it takes time but can be very productive. You know your dad so you can probably think of better things than these but just to give you a few egs. In his presence but not to him just mention in passing to another family member that all this talk of exercise makes you realise how unfit you are that’s all. A few days later you have decided to get a bit fitter but don’t fancy doing it alone. Maybe two of you could go for a short walk. Next step might be a short drive to somewhere nice to walk and invite your dad on the drive - when you get there let him wait for you in the car and have a cuppa together (take a thermos if you think a cafe may be too much) you could give him the choice of joining you on the walk but don’t push it. Do you see what I mean little bite size pieces no pressure. What about doing a few stretching exercises together, there are some excellent Parkinson’s excuse videos on youtube if you have it. He may be embarrassed about his speech so best to keep numbers small and limit background noise and if he’s like me, I find it difficult to be grateful to someone who tries to help by second guessing what I am trying to say. It helps if you have some idea of the subject matter if he is really struggling or just say sorry dad I am being a bit stupid today you’ll need to give me time the brains on go slow today. Box clever, be patient and persevere but also remember just what hard work it is for your dad - all the movements you take so much for granted, walking, talking never mind doing them at the same time, washing dressing eating speed of thought etc take so much more effort and concentration than for you and that can be utterly exhausting and knowing just how hard it is, as I am sure your dad does, is not exactly the best motivator. It is a challenge but hang on in there and aim for small victories, a ten minute walk round the block not the mile round the park or the Olympic medal. Good luck and best wishes, I hope this has given you food for thought.
Hi ,I do understand what dad is going through , I was diagnosed six years ago , at the time I thought just take the tablet on time and I would be fine , I’ve always been very active , I love to get into my shed , my kids say , my dad can fix anything , !! But wow if only they now how bad my pains are , but I know my responsibility is to my family , I’m there dad , I have discovered that the more I do the better I feel , being busy to me is a bonus , it really works , I have found I can adapt to any situation, the tablets take an hour to work and during that time I’m thinking what to do next , I’m building miniature fairy houses , and making a lot of people happy , I’m my old self again ,I’m very happy , I would love to have your dad as a friend that I could talk to and encourage him to be motivated , it sure as worked for me , God bless you ,Ray
Can I ask what medication your Dad takes please ! Situation sounds a bit like my husband who is almost 73 and diagnosed a year ago but suspected about 2 years prior
I have found it very useful belonging to the local Parkinson’s support group , who provide support , friendship and in our case 2 of the group things your dad needs, Exercise and Speech therapy, which are run on alternate Fridays. This gives me something to look forward to each week ,but due to the current lockdown we haven’t been able to hold them, and I have gone worse.
I am hoping that we will be able to resume them soon as I realise that we benefit so much from them even though you are only getting 1 session every fortnight.
Try finding your local group if you’re not already a member.
Still keep in contact with the medical professionals as the group will not provide medical advice, but just friendly contact between fellow sufferers.
In 2017 our group won the Queens award for voluntary service, largely due to the efforts we made to support exercises we provided and our contacts with the local NHS authorities.