HI EWAN, YOUR INPUT IS VERY INTERESTING. MY HUBBY IS 78 AND HAS HAD 2 HEART ATTACKS ALONG WITH AF AND PSP. DON'T REALLY KNOW HOW MUCH HE CAN REALLY DO WITHOUT HURTING HIMSELF. WE HAVE A PT COMING IN TWICE A WEEK BUT GETTING HIM TO JUST WALK WHEN SHE IS NOT HERE IS IMPOSSIBLE. HE JUST SITS AND DOZES MOST OF TE DAY. WON'T READ AND WATCHES TV N THE EVENING. I AM VERY FRUSTRATED TRYING TO GET HIM JUST TO WALK BACK AND FORTH IN THE HOUSE. USES A WALKER. HIS ISSUES ARE MOSTLY BALANCE ONES. HIS NEURO TOLD ME THAT HIS EXTREME FATIGUE IS DO TO THE DISEASE AND THE MEDS, SINEMET AND THE REST THAT HE HAS TO TAKE FOR HIS HEART, HIGH BLOOD PRESSURE AND JUST RECENTLY ANOTHER PILL FOR A SLIGHTLY LOW THYROID ISSUE. A LOT TO DEAL WITH AND I AM VERY PROTECTIVE BUT EXHAUSTED AS WELL. ANY SUGGESTIONS?
AUDDONZ
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Auddonz
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One thing I know you can do is take car of your self. If you don't exercise then start it will make you more able to take care of your hubby. Make the time to do it you will not regret it.
Your post is of particular interest to me as I also have had two heart attacks - 1 in 2011 & 1 in 2013. I have been dxd with PD for 12 yrs now & have tried a range of meds & treatments, both conventional (Ropinirole & Sinemet, physio & hydrotherapies) & alternatives - acupuncture, hypnotherapy, Tai Chi, Bowen massage & more. However your husband is 11 yrs older than me so was older at dx. Had he been fit up to then? Did he have any pastimes that involved exercise, especially being outdoors, such as walking a dog? Motivation is the key to taking part in any activity - mental or physical. I watched a lifelong friend who was fit - looked after & rode 4 horses, ran a national society for animal protection, was out walking for hours a day with his dogs - lose the will to do anything & the ability to do so in 8 weeks prior to his death at age 63. His wife, myself & a small group of close friends tried everything we could think of to motivate him to move. His prognosis was good.
With regard to support for yourself I wonder where you live? Here in UK most areas have a PD nurse who complements the work of the GP & consultant. They can help to fill in forms for allowances & are joint funded bu Parkinson's UK who have an excellent range of news sheets on all aspects of PD including care for carers.
You may want to check with his cardiologist to see if cardiac rehab would be an option. Some insurance companies will pay after a heart attack. It is a good program because he would have heart monitoring during the exercise. Good luck.
Have same problems with heart, etc. even though my husband actually likes to exercise...if he will start. Pool is great with Aquajogger for support...they can run in water...great for heart. Cardiac rehab a must. Apathy is part of the PD or mess. Maybe related to depression. We use 1600 mg l-theanine divided dose daily to help with anxiety/depression/apathy. Very good for heart according to cardio doc.
Boxing, dancing, finger painting, lack of exercise kills....
I get it!!! If that helps. I don't have answers cause everyone tells me to take care of me. Easy for those that are not in your shoes to say, all well intended and true🙁 my husband has Parkinson's, chronic arthritis pain, depression, multiple spine surgeries, 2 heart stints, double total shoulder replacements. He has no energy, can't sleep, dizzy spells and a few falls. Can't work and was a workaholic. Sits all day watching tv, depressing news. He's suspicious and ruminates with nothing to do.its awful. I just filled his pills, 9 prescriptions morning only pills plus 3 at night. prayers, family are my strength. My heart breaks. God bless you.
Hi, Auddonz, Thank you for your message. I find the smallest exercise can be hugely beneficial. I'm going to the gym later today and my wife will be taking lots of videos. I'll include some that can be easily achieved from a seat position. Check back later today at parkinsons.me for the videos. If your on Twitter I can post directly from my iPad which could be very effective. Pls follow me @parkinsons_me. I also have a physiotherapist friend locally I will talk with her about exercise programs and get back to you.
I know how frustrated I can get if certain circumstances but I now realise that allowing extra time to achieve everything is vital. Making the slightest positive change or introducing a new activity can have tremendous effect. I also find music can change my mood for the better and the rhythm can encourage movement.
My final thought (for now) is what about aromatherapy ? Essential oils can be very powerful I will also double back to you about that.
I'm not sure if this helps but I'm very happy to work with you to find even the smallest improvement that we can build on.
Hi Ewan, I would have to check with his cardio to see what is safe for him to do since he has had 2 heart attacks and also has AF. Today we went to his neur for an evaluation since he has been on sinemet for months. She decided after he was off the med since 9:00 PM last night as per her request and given today by her at 11:30 AM Now my husband has been diagnosed with Parkinsonism, which from I have been told is not Parkinsons disease. I am thoroughly confused since he was given meds, Sinemet for Parkinsons. Would love to get him into the Mayo, which is the best in the US but it is very difficult. He has no tremors, has difficulty getting up from a seated position, walks very slowly but again he is 78 years old. Changing her diagnosis from Parkinsons to Parkinsonism is throwing me for a loop completely. Any input would be greatly appreciated.
In your first post you said your husband has PSP. This is slightly different from idiopathic Parkinsons which most people here have.
It comes under the broad Parkinsonism label which you could consider like for example the cancer label. Both are labels to cover a whole lot of related conditions but they are not the same and treatment is slightly different for each condition.
PSP is in a subgroup of conditions sometimes called Parkinsons Plus syndromes. One of the signs that it may be a Parkinsons Plus syndrome is not responding to Sinemet. Usually they will give it a try but stop if it has no effect. This seems to be what has happened to your husband. I don't think she has changed the diagnosis if she had already said it was PSP. Sounds like lack of clear explanations to you.
There is a PSP forum on health unlocked you may find useful.
I belong to that group. I felt he was responding to sinemet but her test of giving him just two of the lower dose and then waiting an hour to see if it made a difference, she felt it did not. I disagree and am very upset. I saw a huge difference when he started taking it. I am completely disgusted.
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