Today is Parkinson's Disease Awareness Day

[donheff]

I was diagnosed with Parkinson's Disease 5 months ago so I notice things like that. For me, it is early days, so I am still very active and hope to remain so for some time. Others, who are effected earlier or more acutely, struggle mightily with the disease and all of its strange symptoms. There are good organizations working hard to find a cure and/or treatments for PD. I encourage all of you "blow that dough" participants to add some Parkinson's organizations to your annual giving. The three I like the most are the Davis Phinney Foundation (I am an avid cyclist and Phinney was a pro who developed PD); The Michael J Fox Foundation, of course; and the Parkinson's Foundation.

 

[CindyBlue]

My DH was just diagnosed with Parkinson's yesterday. Right now, while I'm trying to be strong and behave "normally" for him, following his lead, and to be there for him for whatever he needs emotionally as he deals with this diagnosis, I am devastated for him.

We retired together a year and a half ago.

He has a both sister and a friend with Parkinson's, and while the sister is living a fairly normal life so far, his friends progression was very fast, a couple of years from "everything is normal" to bedridden and on hospice. Hubby has been closely involved with both the whole time.

We are processing it all right now. I'm think I'm at the "This kind of thing doesn't happen to US!" denial stage. DHs symptoms are mild so far. But since Parkinson's is progressive and incurable, both of us want to be positive, and to make the best of the time he has for travel and normal daily activities, because we don't know how fast this disease will progress for him.

I've done a lot of reading abut Parkinson's on the internet, and there is a lot of good information, but if you are willing, I'd appreciate any thoughts you might have for me...

 

[donheff]

I've done a lot of reading abut Parkinson's on the internet, and there is a lot of good information, but if you are willing, I'd appreciate any thoughts you might have for me...

Unfortunately, the symptoms and progression can vary significantly as you saw with his sister and his friend. The best advice I can give you is to find a good motion disorders specialist so you are getting the best advice. My worst fears center on the possible emotional and cognitive effects, none of which are currently affecting me. My impression is that they are more prominent in the less common Parkinsonism variants like Lewy Body Dementia (Robin Williams) and Multiple Systems Atrophy (Linda Ronstadt) than in Parkinson's Disease itself. Six months in I have become pretty comfortable with things but, like your husband, my symptoms remain mild.

 

[CindyBlue]

Unfortunately, the symptoms and progression can vary significantly as you saw with his sister and his friend. The best advice I can give you is to find a good motion disorders specialist so you are getting the best advice. My worst fears center on the possible emotional and cognitive effects, none of which are currently affecting me. My impression is that they are more prominent in the less common Parkinsonism variants like Lewy Body Dementia (Robin Williams) and Multiple Systems Atrophy (Linda Ronstadt) than in Parkinson's Disease itself. Six months in I have become pretty comfortable with things but, like your husband, my symptoms remain mild.

I am so sorry about your diagnosis, and am grateful that your symptoms remain mild.

I agree...the emotional and cognitive side effects are the most concerning for me, too. Not sure he's thought about it - I think he's focused on the physical.

I've never heard of a "motion disorders specialist." I will look that up right away.

I know that my hubby and I will be able to deal with this, because that's what we do, and have always done. but right now I am still in shock. I want to know what I can do to help, and support him, and to take care of him. Thank you for your reply...

 

[Souschef]

I first met Jim in 2014, when his wife told me he loved to fly, but has Parkinson's. That was the start of a beautiful friendship.
We flew for Angel Flight from 2014 to 2020, when his doctor grounded him due to a change in medication.
We also worked together restoring a 1941 switch engine.
He recently moved to Tennessee, and is still going strong.
There is hope for long time quality of life.

 

[CindyBlue]

I first met Jim in 2014, when his wife told me he loved to fly, but has Parkinson's. That was the start of a beautiful friendship.
We flew for Angel Flight from 2014 to 2020, when his doctor grounded him due to a change in medication.
We also worked together restoring a 1941 switch engine.
He recently moved to Tennessee, an dis still going strong.
The re is hope for long time quality of life.

Thank you...I really needed to hear this right now...

 

[donheff]

I

I've never heard of a "motion disorders specialist." I will look that up right away.

An MDS is a neurologist who specializes in motion disorders including PD. Most people see their GP and then maybe a neurologist and get a vast mix of help. Some do fine and others go through months or years of ambiguity. PD is a clinical diagnosis- there is no definitive test. An MDS is trained to cut through the fog.

I was lucky. I noticed a mild tremor and looked up PD. When I saw the bizarre list of symptoms that are associated with it I immediately said “oh s**t, that’s me.” I couldn’t reach my GP so I googled PD centers in my area and learned that Georgetown Hospital has a well regarded motion disorders center. I had a Zoom appointment with a great MDS three days later. Very lucky.

 

[Gremlin]

My DH was just diagnosed with Parkinson's yesterday. Right now, while I'm trying to be strong and behave "normally" for him, following his lead, and to be there for him for whatever he needs emotionally as he deals with this diagnosis, I am devastated for him.

We retired together a year and a half ago.

He has a both sister and a friend with Parkinson's, and while the sister is living a fairly normal life so far, his friends progression was very fast, a couple of years from "everything is normal" to bedridden and on hospice. Hubby has been closely involved with both the whole time.

We are processing it all right now. I'm think I'm at the "This kind of thing doesn't happen to US!" denial stage. DHs symptoms are mild so far. But since Parkinson's is progressive and incurable, both of us want to be positive, and to make the best of the time he has for travel and normal daily activities, because we don't know how fast this disease will progress for him.

I've done a lot of reading abut Parkinson's on the internet, and there is a lot of good information, but if you are willing, I'd appreciate any thoughts you might have for me...

I’m so sorry to hear this, Cindy Blue. Praying his course will be the very slow to progress kind! My FIL had Lewy Body so I am familiar with the rapidly progressive course of that particular form. Take the time to process this and be good to yourself too. Most of all, try to not let the fear of the future ruin your much-deserved retirement happiness now. Easier said than done, I know.

 

[CindyBlue]

Most of all, try to not let the fear of the future ruin your much-deserved retirement happiness now. Easier said than done, I know.

Your word put me into floods of tears. It's going to be hard to do, but you are right. I know I'll do better after a while to process our new situation.

Most of all, I want to support him in whatever ways he needs...and I don't know what that is yet.

Thank you...

 

[Gremlin]

Your word put me into floods of tears. It's going to be hard to do, but you are right. I know I'll do better after a while to process our new situation.

Most of all, I want to support him in whatever ways he needs...and I don't know what that is yet.

Thank you...

I obviously don’t know you, but from the posts of yours that I’ve read I have learned that you seem to be a kind-hearted, caring person. That in of itself is a great gift to your husband. Some people find great help in support groups where people are dealing with similar struggles (others don’t like them at all, of course) That might be something for you, and maybe even your husband if he is so inclined, to consider after you both have had time to process this news.

I wish you and your husband all the best.

 

[Souschef]

For a little more encouragement, I have posted 3 photos of Jim. One is with an Angel Flight patient we had flown to her appointment, One is Jim about to fly a WW2 training aircraft, and the last was at the back of the switch engine we were working on.
He is still going strong in his new home, but I really miss him.

 

[Spudd]

My mom has Parkinsons. She was diagnosed around 2005, I think. It's hard to remember, exactly. She had fatigue as a symptom from the beginning - that was what led her to get diagnosed. Aside from the fatigue she did well until 2008 when her medication caused her to have hallucinations, which caused her to divorce my dad in a very sad situation (she hallucinated that he was cheating on her). Post 2008, she did well most of the time but occasionally she would get hallucinations again, of varying sorts. Physically she was mostly good (tired, but able to get around, do her own shopping, etc) until about 2017.

Starting around 2017 she needed to use a cane, eventually progressing to a walker (with MUCH resistance) in 2019. Unfortunately around Christmas time in 2019 she developed dementia. She had had cognitive decline before that, such that she couldn't really use her computer any more and had asked me to take over her financial matters. At Christmas that year she forgot to buy any presents. Around March 2020 things got so bad that she didn't know she was in her own apartment. At this point it's progressed so far that she can barely hold a phone conversation and she's in long term care. She is also in a wheelchair at this point.

So she had about 12 reasonably good quality of life years but unfortunately eventually the Parkinsons won out. On the bright side, she seems quite happy despite what outwardly looks like a poor quality of life. She has been a pessimistic negative person for as long as I've known her, and she's currently the happiest I have ever seen her. So that's a big plus.

 

[tmm99]

Don and Cindy,

I am very sorry to hear that you're going through this. I read recently that Parkinson's may be partly an autoimmune disease. That makes me think that a diet may have some impact. The Wahl protocol (initially created for MS) and Keto diet come to mind. You may want to explore the diet aspect in addition to taking medication, etc.

I wish you both the very best.

 

[Koogie]

Very sorry to hear about your diagnosis Donheff and that of other peoples loved ones.

Regarding a motion disorder specialist, shop around. My wife has a degenerative neurological condition and we first saw a neurologist at a specialist clinic devoted to movement disorders. The bulk of his "business" was Parkinsons patients.

He was an abrupt, clinical man. Efficient but unpleasant. His staff, particularly his physical therapy advisor, were good though. Eventually the government yanked his funding and the clinic shut down. I can't say we have missed him.

Unfortunately, DW condition includes occasional seizures and we met a young neurologist through that. He was happy to take her on as a patient as her relatively rare disorder made a change from his usual epilepsy patients. We now almost look forward to the appointments as he is such a pleasure to be around.

I hope you can all find such a clinician and I sincerely wish you all the best.

 

[street]

Sorry to hear that news about ER family. I wish the very best to all and we all need to take one day at a time, and enjoy everyday and each other.

 

[Another Reader]

Cindy:

Did your husband have symptoms of Parkinson's before his bout with Covid? If not, it's important to know that Parkinson's symptoms are one of the neurological sequelae of Covid. The understanding of this in the medical world is limited. He would need to see one of the few specialists in the country that understand there is a connection.

Have you been referred to a movement disorder specialist? Stanford has such a clinic, but they don't have anyone working on the link between Covid and a Parkinsons-like disorder. Dr. Koralnik at Northwestern is studying the neurological sequelae of Covid. He may have such a person in his group.

If this started pre-Covid, ignore the above.

 

[CindyBlue]

Cindy:

Did your husband have symptoms of Parkinson's before his bout with Covid? If not, it's important to know that Parkinson's symptoms are one of the neurological sequelae of Covid. The understanding of this in the medical world is limited. He would need to see one of the few specialists in the country that understand there is a connection.

Have you been referred to a movement disorder specialist? Stanford has such a clinic, but they don't have anyone working on the link between Covid and a Parkinsons-like disorder. Dr. Koralnik at Northwestern is studying the neurological sequelae of Covid. He may have such a person in his group.

If this started pre-Covid, ignore the above.

I sure appreciate this information - thank you.

His symptoms started before Covid...we just didn't make any connection to them and Parkinson's. He lost his sense of smell - most of it - at least 8-10 years ago. We are wondering if his polymyalgia rheumatica symptoms are instead actually symptoms of Parkinson's (lots of aches and pains.) He has had some balance issues, but we thought that was due to either the polymyalgia rheumatica or the prednisone he is taking for that. His handwriting is sometimes shaky, but not tiny the way it is said that the handwriting of those who have Parkinsons disease gets. He has wondered about his voice getting softer for awhile now, but put it down to getting older. He sometimes gets dizzy when getting up from a chair or for bending over and then standing up. Add to that the shaking fingers (that he isn't aware of when it happens when his hands are at rest but can see when he is holding something), and the results of the extensive physical testing the neurologist put him through, noting a specific stiffness in one arm and some definite balance issues, and it seems to confirm Parkinson's as much as it is possible to confirm it at this time. His sister has it, and though supposedly there is only a rare connection to genetics, it is a concern. They are scheduling a CT scan (since he can't have an MRI due to metal in his ears due to hearing operations years and years ago) to rule out a brain tumor or something of that nature.

 

[CindyBlue]

Don and Cindy,

I am very sorry to hear that you're going through this. I read recently that Parkinson's may be partly an autoimmune disease. That makes me think that a diet may have some impact. The Wahl protocol (initially created for MS) and Keto diet come to mind. You may want to explore the diet aspect in addition to taking medication, etc.

I wish you both the very best.

Thank you.

My DH is a very healthy man. We were both on our feet and moving all our working lives, since we were both teachers and coaches. We have about 3 1/2 acres to take care of, and it keeps us both moving a lot. He is a lifelong athlete. He used to run marathons and 10ks. In his own concession to his age, he decided to drop running and now we walk and he swims twice a week, and we are learning to play pickleball. He is the cook in the family, and he cooks very healthily - lots of veggies - without being a fanatic about it (we still love a good steak now and then (smile!)

I will look up the Wahl protocol and the Keto diet. Thank you again!

 

[CindyBlue]

Very sorry to hear about your diagnosis Donheff and that of other peoples loved ones.

Regarding a motion disorder specialist, shop around. My wife has a degenerative neurological condition and we first saw a neurologist at a specialist clinic devoted to movement disorders. The bulk of his "business" was Parkinsons patients.

He was an abrupt, clinical man. Efficient but unpleasant. His staff, particularly his physical therapy advisor, were good though. Eventually the government yanked his funding and the clinic shut down. I can't say we have missed him.

Unfortunately, DW condition includes occasional seizures and we met a young neurologist through that. He was happy to take her on as a patient as her relatively rare disorder made a change from his usual epilepsy patients. We now almost look forward to the appointments as he is such a pleasure to be around.

I hope you can all find such a clinician and I sincerely wish you all the best.

Our doctor up here is very nice, but did a video call and decided he had essential tremors, from a few questions and her observations on Zoom. But we had already made an appointment for the Veterans neurology department in the city, so he decided to keep that appointment...and we are so glad we did.

After 1 1/2 hours of extensive questioning and physical tests, moving DH's arms and legs and walking him through a number of balance exercises, the neurologist made his own conclusions. Then he called in the neurologist at the next level up, and she repeated some of the tests, and they both confirm his symptoms as that of Parkinson's type symptoms.

The neurologist showed amazing professionalism and compassion, and encouraged DH to call him any time to ask questions or express concerns. He assured DH and me that he and the staff at the Veterans were with him for the long haul. We think we will be very happy with the service and treatments he will be getting. The only issue is that the VA neurology clinic is a good 50 miles south and lots of traffic to get there, so when DH loses some of his physical ability, that will make things more difficult.

Now...I'm trying to figure out away to express my extreme displeasure at the diagnosis made by our doctor up here. Who knows, she might be right and the Veterans neurologist might be wrong, but I doubt it. I know that 20/20 hindsight is not a good way to see, but it seems to me that our doctor up here should have immediately scheduled an appointment with a neurologist instead of trying to make a diagnosis of this potential severity on a Zoom call...sigh...

 

[Dtail]

Thank you.

My DH is a very healthy man. We were both on our feet and moving all our working lives, since we were both teachers and coaches. We have about 3 1/2 acres to take care of, and it keeps us both moving a lot. He is a lifelong athlete. He used to run marathons and 10ks. In his own concession to his age, he decided to drop running and now we walk and he swims twice a week, and we are learning to play pickleball. He is the cook in the family, and he cooks very healthily - lots of veggies - without being a fanatic about it (we still love a good steak now and then (smile!)

I will look up the Wahl protocol and the Keto diet. Thank you again!

CindyBlue,
Sorry to hear about your DH.
On the note of Pickleball, one of the better players I play with has Parkinsons. His left hand is always shaking, but otherwise you wouldn't know about this disease. No sure though how many years he has had it.

 

[Another Reader]

Relieved to hear it is not related to Covid. Which VA hospital? It sounds like you found a good one.

 

[audreyh1]

So Parkinson's is not easy to diagnose in the early stages? That sounds frustrating.

 

[Golden sunsets]

Don & Cindy; Sorry to hear of the recent diagnosis'. I've never mentioned on this forum that my DH has Parkinsons. He was diagnosed in January 2011, but likely had it as early as 2008, in retrospect. His handwriting deterioration and double vision(especially when night driving) were early signs. He did not have any visible tremor until many years later, at which point he started the traditional medication.

I understand and empathize with your initial reactions. I recall having many sleepless nights initially while adapting to our new reality.

I'm here to tell you both though that we have adapted successfully and lead a pretty normal life, all these years later. DH's progression has been slow.

Finding a Doc who is a movement disorder specialist is #1, as mentioned. Make sure you like him/her, as you will have a long term relationship with this individual.

One thing not specifically mentioned so far is the importance of physical exercise. A regimen of repetitive exercise, such as cycling or walking is crucial. There is a boxing program for PD patients that might be of interest. There is also a ballroom dancing program for PD. And I've heard of yoga for PD as well.

Another suggestion is ask your doc for a referral to the Lee Silverman Big program. This 4 week course is run by PT's and or OT's and is a covered medical expense. The program is designed to meet the patient's specific needs and builds skills to overcome/compensate for the patients unique challenges( such as balance issues, walking techniques, fine motor skills, large motor skills, etc) DH has been through the course 3 times, as his motor issues have evolved, each time insurance has paid.

Cindy; You mentioned the VA. Was your DH by any chance in Vietnam? I ask because Parkinsons is a presumed connection to Agent Orange. DH who served in Vietnam filed a claim based on his diagnosis and was automatically deemed disabled. He was assigned a rating of 100% disabled. I just wanted to mention this in case he falls into this category.

Best of luck. Feel free to PM me.

 

[CindyBlue]

I obviously don’t know you, but from the posts of yours that I’ve read I have learned that you seem to be a kind-hearted, caring person. That in of itself is a great gift to your husband. Some people find great help in support groups where people are dealing with similar struggles (others don’t like them at all, of course) That might be something for you, and maybe even your husband if he is so inclined, to consider after you both have had time to process this news.

I wish you and your husband all the best.

Thank you...

 

[CindyBlue]

Don & Cindy; Sorry to hear of the recent diagnosis'. I've never mentioned on this forum that my DH has Parkinsons. He was diagnosed in January 2011, but likely had it as early as 2008, in retrospect. His handwriting deterioration and double vision(especially when night driving) were early signs. He did not have any visible tremor until many years later, at which point he started the traditional medication.

I understand and empathize with your initial reactions. I recall having many sleepless nights initially while adapting to our new reality.

I'm here to tell you both though that we have adapted successfully and lead a pretty normal life, all these years later. DH's progression has been slow.

Finding a Doc who is a movement disorder specialist is #1, as mentioned. Make sure you like him/her, as you will have a long term relationship with this individual.

One thing not specifically mentioned so far is the importance of physical exercise. A regimen of repetitive exercise, such as cycling or walking is crucial. There is a boxing program for PD patients that might be of interest. There is also a ballroom dancing program for PD. And I've heard of yoga for PD as well.

Another suggestion is ask your doc for a referral to the Lee Silverman Big program. This 4 week course is run by PT's and or OT's and is a covered medical expense. The program is designed to meet the patient's specific needs and builds skills to overcome/compensate for the patients unique challenges( such as balance issues, walking techniques, fine motor skills, large motor skills, etc) DH has been through the course 3 times, as his motor issues have evolved, each time insurance has paid.

Cindy; You mentioned the VA. Was your DH by any chance in Vietnam? I ask because Parkinsons is a presumed connection to Agent Orange. DH who served in Vietnam filed a claim based on his diagnosis and was automatically deemed disabled. He was assigned a rating of 100% disabled. I just wanted to mention this in case he falls into this category.

Best of luck. Feel free to PM me.

Your post contains an amazingly important wealth of information. I just don't know how to thank you for taking the time and effort to write to help us.

Yes, DH was in Vietnam, for two years, 1967 and 1968, I believe.

He is (obviously) already in the Veteran's program - I don't know what his rating is but it's not very high, mostly because he doesn't ever complain about anything (and in this case, he should have been more forthright.)

Some questions for you:

1. We are retired...will that have any effect on his being able to be rated 100% disabled?

2. Will this new diagnosis of Parkinson's make a difference in his current rating to be able to change his current rating to 100% disabled? Or is he "stuck" at the level that he is at now? Because being rated 100% disabled would mean a lot more help would be available for him...and for us...

3. Since he is already being treated for this at the Veterans, might they automatically change his rating or does he need to re-file for a new rating?

Thank you again!!