New to forum - daughter who wants advice!

[sentry20]

Hello everyone, I’ve decided to join this forum today after a tearful phone call with my mum. I want to do what I can to help her and my dad.

During the lockdown, my dad’s health has rapidly and frighteningly deteriorated. He was diagnosed with essential tremors at the beginning of the year but we all suspect Parkinson’s as his symptoms have increased and got worse. After his first phone consultation with a neurologist last week, he is waiting for a dopamine prescription. He is 78 years old and has always been very fit and healthy. He had an unexpected fall a few years ago and since then his health has gradually got worse, he has an enlarged prostate, an over-active bladder, tremors, digestive problems, stooped shoulders, very slow and unsteady gait, slow at eating and all activities in general and his confidence is at an all time low. He won’t visit us and the grandchildren as he is embarrassed about how he looks and moves. We are shocked at the speed in which he seems to have deteriorated these last few months both physically and mentally.

The most recent problem is upper body strength. He can no long get in and out of bed or put on his shoes and socks. This is someone who was able to do all this only a couple of months ago. My mum is a tower of strength but I caught her today in tears. We are an hour away and with the social distancing rules I feel helpless.

Should I try and find a physio for my dad. Would this even help? Is the dopamine going to make a difference? I’m worried about side effects too, my dad doesn’t cope well with drugs in general and always has some side effects, plus he is taking so many already for various issues.

Looking for advice on how I can support him and my mum and what actions I can take to have a positive affect on his life. I can’t sit back and wait and see and want to be proactive. We all feel so sad.

Many thanks for reading if you got this far!

[Tot]

Hello I am writing off the top of my head as you sound so desperate and sad I felt you needed a quick reply so you know you are not alone and I am sure other forum members will be in touch too. Yours is a very complex situation and warrants a considered reply so my apologies if this sounds a bit simplistic, perhaps think of it as a starting point. First although awful for you, I think your mother’s tears are no bad thing,it releases pent up emotion and can often give renewed strength to carry on. It is obviously awful for her but you probably know yourself after the exhaustion that comes with tears there comes a kind of peace even if temporary.
Second although it may not seem much to you, just being there as you are on the end of the phone, doing what you can during this strange time of restrictions, is worth a lot. You are doing the best you can and that’s all you can do.
Third, I am not surprised your father is distancing himself from family. However kind and accepting you all are it will be hard for him to be seen by you all, not only for his physical or other associated problems but, if he is like me and many of my fellow Parkies, it avoids the feeling you’re a burden and/or not the way you want to be remembered. Unintentional though it may be, catching the pitying glance, overhearing an odd comment on how tragic it is…can all cut like a knife. It may not even happen but the fear can be enough. Parkinson’s is an enthusiastic confidence stalker in my opinion. Just try and keep the lines of communication open, encourage but don’t keep on about seeing the family or whatever. A light touch, drip feed and a lot of patience may bring results.
As to his actual medical situation I think you need to seek intervention from whoever is involved in his care or go to his GP for referral. From reading your post I get the impression everything is mixed up and you can’t see the wood for the trees. Getting that sorted will make a difference I am sure.
The forum is open 24/7 so do use as you need, it is a safe place to get rid of your anger and frustration or dry your tears and hold your hand. I’m not sure how useful this will be to you but I hope it helped a little.
Sending love and hugs.

[sentry20]

Thank you so much for taking the time to reply. The confidence part really hits home. It’s like my dad has shrunk - when we have seen him recently he is very quiet and almost hides. Your insight is really helpful.
I’ll make sure I check in on them and support all I can from a distance. So hard to feel helpless!

[Tot]

Hello again, glad you was able to take something from my fast and not very thought through reply. Still haven’t had a chance to think if through fully - although other forum users may be able to step in - however one thing has just occurred to me that it may be useful to be aware of. There are as I am sure you are know, lots of small items of equipment that could help your dad stay independent. To use your example a sock gutter, dressing stick, and long handled shoe horn could help with getting shoes and socks on and off. Slow eaters mean food gets cold and doesn’t encourage them to eat. You can get plates and bowls that sit on a base that holds hot water keeping food hot for longer. I think the melamine ones are good they look more like a standard plate and are light to carry. Many people refuse such equipment seeing it as reinforcement that they have deteriorated. I suspect your dad may well be one such person. Of course they are by and large not wrong, there probably has been a change that warrants the use of equipment. You need to try and change their perspective from one of seeing equipment as a reinforcing deterioration to one of enabling him or her to maintain independence. The drip feed method described above can be useful. If I have any more light bulb ideas I will let you know. Hang on in there, you’re doing ok.

[sentry20]

What great ideas, thanks so much! Yes you have described his reaction perfectly, he will definitely not want anything that reinforces the fact he can’t do something independently anymore. For me, this is going to be the biggest challenge, and probably is for lots of people living with PD, to try and help my
Dad remain optimistic in light of his deteriorating circumstances. I want to put him in touch with this forum but don’t feel he’s ready yet. My dad has struggled with positivity even before the health issues arose - could his physical symptoms be improved with a better mental outlook? I feel like his depression over the lockdown has forced the physical changes to come on faster, but maybe that’s just coincidence.

[Tot]

Hello again, I am personally a great believer that if you are able to develop and maintain a positive outlook it helps you manage Parkinson’s or indeed life in general better. Unfortunately it is easy to write but not that easy to do. For me, I am in my 11th year since diagnosis, it is fundamental to how I view my Parkinson’s. I don’t waste time fighting the diagnosis, there is not at the moment a cure so I take that as a given. What I challenge is the impact it has. It is true you can’t forget it because it affects everything you do but it is not me. I don’t define myself by my condition i am Tot first who happens to have Parkinson’s and I intend to keep it that way for as long as I can. Many see it as a battle, that’s not for me because ultimately it is a battle I can’t win. I prefer to see it as a series of challenges, taking on each one and finding ways to live with it as it were. It’s not easy, I have my moments and my way isn’t for everyone but it works for me. One of the difficulties with Parkinson’s is that there are range of non motor symptoms of which depression and anxiety are common; they can make staying positive very hard as can your natural personality (are you a glass half empty or half full person). So whilst I see a positive mind set as important for me, it is complex and dependent on a whole range of things. As your dad’s mood is a bit low just now it is probably making everything harder even simple decisions like tea or coffee, shall we walk or take the bus can seem impossible. If he is not keen on seeing a doctor or taking meds might he consider some form of complementary option? I suspect not but you never know. Maybe worth speaking to your mum perhaps she could plant the seed. Another avenue that might work is you tube they have loads of exercise programmes including seated ones as well as Parkinson’s specific- he might be more open to it if he can do so on his own at home or maybe he and your mum could do together. If not into technology any simple stretching exercises would be a start - exercise is important and stretching I think is essential as us Parkies tend to go small - steps, voices, writing so if your dad can be encouraged to think big that would be good. I’m getting carried away and don’t want you getting overloaded but if you could get your dad to stretch and do a bit of exercise you may be able to lift his mood a bit so you can address other issues. Hope that makes sense to you

[sentry20]

Thanks again. You write so clearly and with great suggestions. Your positive attitude is contagious and I feel much better since my first message, so thank you again! Bizarrely my dad can run, he has always been a runner and whilst he is very slow at walking and his arms won’t work at the minute, he is able to go for a jog (bladder dependent!) This is what helps his mood and I hope it’s not taken from him yet. YouTube is a fantastic idea, I think he needs to work on mobility and I will suggest this. You’ve helped me understand that I need to be present but not pushy, hopefully he will want to see us again soon. I miss them both, but I’m determined to stay helpful and upbeat and not wallow! Thank you for taking the time to help me when you are living your own Parkinson’s challenges. Really appreciate your time and advice.

[Tot]

Glad you’re feeling a bit more positive about things and as you can see for yourself now, a positive frame of mind can have quite a profound impact even though nothing has actually changed. I would certainly encourage your dad to keep up his running as this could be the key you are looking for - it helps keep him fit but more than that, it is an activity he enjoys. I don’t know anything about your children so this could be a totally stupid suggestion but when lockdown rule open up maybe one way of getting your dad back on board is for them to do a short run with him. They could even send him an invitation if they wanted. The basic premise is that you don’t just visit for visits sake but because there is a specific reason or purpose, you can of course tailor it to suit your circumstances. I appreciate you are a bit of a drive from your parents but I would suggest also keeping initial get togethers quite short. If it has a purpose and isn’t too long your dad may feel he can cope better and be prepared to give it a go. Finally don’t make heavy weather of his having Parkinson’s, the main conversation should be around the activity and don’t have too many people your dad may have difficulty keeping up with conversations if there are too many people about. Onwards and upwards!!
PS no thanks needed, happy to hear my waffling on has helped a bit

[EmilyDell]

Hi @sentry20

I am so sorry to hear about the difficult time that you, your mum and Dad are experiencing. We know that Parkinson’s affects everyone differently and can trigger a range of emotions which is why we are here to support you and reassure you that you’re not alone. We also know that lockdown has been particularly challenging for many people with Parkinson’s and their family and friends and to help with this, we have added a dedicated support tool on our website which you may find helpful to help you access the support and advice you need.

As some of the other members have suggested, I would also recommend that you contact our helpline.. Our helpline is a free, confidential service made up of Parkinson’s nurses and trained Parkinson’s local advisers who are are here to answer any questions you have about your Dad’s condition (particularly about medication as you seem to be concerned about this) so do give us a call us on 0808 800 0303 or email us at [email protected]. They will also be able to offer support for yourself and your mum too.

I hope you find this information helpful.

Best wishes,
Emily - Moderation Team

[sentry20]

Thank you Emily, lots of good resources on here. Glad I found you.

[William]

Have every Hope and expectation that dopamine WILL deliver. Well done reaching out. Lots of professional support,as you’d expect, is available if you and your mother reach out. Keep strong

[sentry20]

Thank you! My father is two days into co-careldopa, and has a neurology face-to-face in 3 months. We hope he will feel some improvement soon.

[sentry20]

Hi everyone, hope you’re keeping well. So my father has been on co-careldopa now for a week and noticed nothing. No improvements or side effects, does anyone know what this might mean? That he isn’t responsive to this drug, he doesn’t have Parkinson’s, the dose is too low, it’s not been long enough? My parents haven’t contacted the Dr yet as my father has another week of medication to go, but I thought he might have seen some changes either positive or negative.

[Tot]

Hello again, it’s been a couple of weeks since your post. How is your dad doing now? Sorry I haven’t replied quicker - been having some technology problems

[Coldtuna]

Hello @Tot - I wanted to thank you for helping - my stepmom is newly diagnosed and feeling depressed and your points have been really useful. My grateful thanks Tina

[Tot]

Hello just wanted to apologise for slow reply have only just picked up your post, good to hear my thoughts have helped. Hope stepmother and all the family are doing OK. The early days/months post diagnosis can be tough. Post again if you need. Take care.